Patient Stories

These are stories told by patients and parents themselves. The purpose of these stories is to lend experiences to help others in similar circumstances and to provide education for others. We’ve organized the stories by age group, but some stories can appear in multiple places (mainly due to treatment length occasionally spanning multiple age groups).

Thank you to all of those who have shared their experiences and helped others through their experience with Hip Dysplasia!

November 23, 2021 Overcoming the odds

Overcoming the odds

My name is Taryn and I was born in the 80’s in Port Elizabeth, South. This is my story…. At the age or stage of... My name is Taryn and I was born in the 80's in Port Elizabeth, South. This is my story.... At the age or stage of walking close to 1years old, my Granny noticed my shoes I walked with had a odd squeak, the squeak silenced every odd step. She raised the concern with my mom who then discovered that in fact I am walking with a slight limp. At this stage, she could only take me to a hospital who then referred me to an orthopedic surgeon. Upon investigation, he then at the age of 1, decided to operate, operation after operation he didnt went around in cycles and at 7years old wanted to perform a total hip replacement on me. My parents then opted for a 2nd opinion and changed doctors.  A brilliant doctor in Pretoria, SA decided to take my case and started the reconstruction process. At that stage I had about 7 ops on the hip, not much left and the previous dr chopped away and disfigured my hip, poor Dr Pretorius had to work with what he had. At the age of 17 he discharged me, after completing a reconstruction of my hip and in total 16 ops, I was discharged. He tried to give me the best he could with what I had. At 18, I had my last surgery to remove the pins and plates and was told by 30 I may need a total hip replacement. I'm 40 years old now, still using my reconstructed hip and I've just completed my 2nd triathlon, I have 3.5cm discrepancy in leg length and most days I have pain. All my shoes have to be built up and I'm restricted to rotation in my hip. I am grateful to be here and tell my story, nothing is impossible, my goal is to compete in the world ironman one day. Hope this story helps someone persevere through the difficult times. The sun does shine on the other side. Thank you T



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November 20, 2021 LEAH’S STORY

LEAH’S STORY

My daughter Leah was diagnosed with Hip Dysplasia at birth. At 10 weeks old she was placed in a pelvic harness to gently position her... My daughter Leah was diagnosed with Hip Dysplasia at birth. At 10 weeks old she was placed in a pelvic harness to gently position her hips so they can align in the joint, and to keep the hip joint secure. The doctors had said that in some cases Hip Dysplasia can correct itself, unfortunately that was not the case for Leah. When Leah was 9 months old the doctors discovered her condition had worsened. Leah struggled to crawl, walk, and maneuver the way that she should have been able to. She had her first surgical procedure at only 14 months old. She endured a Pelvic osteotomy and was placed in a Spica cast. She spent a total of 4 months in a spica cast and went through a total of 3 surgical procedures during this time. Unfortunately, this did not correct the problem. When Leah was 3 years old, she would need to have a pelvic osteotomy and femoral osteotomy with bone graft followed by 6 weeks of being in a Spica cast. Leah is strong, she is brave, and she is a hip dysplasia warrior!



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November 20, 2021 The years seem like days with Hip Dysplasia

The years seem like days with Hip Dysplasia

Hi, I am Holly and I am 17. I was first diagnosed with Hip Dysplasia at 5 weeks old. My left hip was fully dislocated... Hi, I am Holly and I am 17. I was first diagnosed with Hip Dysplasia at 5 weeks old. My left hip was fully dislocated and my right was deemed immature. So I was put into a Palvik harness for four months. This had worked and I was checked up on until the age of 2 where I was declared “hip healthy” and that was the biggest lie I have ever been told… At 7/8 I had moderate left hip pain and I was referred to a physiotherapist where I was told it was likely growing pains and with physio it seemed to improve over 8 weeks where I was then discharged. Again at 11/12, I was back in physio after a snapping and clunking sound when doing High Jump and the same was said. Then at 15/16 I had left knee pain and I was back in physio - practically my second home by now - it was yet again thought to be growing pains.  Then in my first year of sixth form I started to experience severe bilateral hip pains. I was finally sent for an xray and more physio. The xray came back as nothing outside of the normal range, so I was working hard on physio in hopes of improving, but it just worsened. It took 5 months of physio until someone spotted the clunking of my hip joints where I had a referral to orthopaedics. In May I saw the orthopaedic consultant and he suspected Hip Dysplasia (yep, its back!) labral tearing and FAI. I had a MRI to confirm the tearing but it came back as very mild so it was now a waiting game for diagnostic hip injections to check the pain was due to the hip. In August I had hip injections which relieved pain for 5 days and was then referred to a young adult hip specialist.  Fast forward to now and I have been diagnosed with persistent femoral neck anteversion on background of developmental dysplasia of the hips. I am waiting on femoral osteotomies in a hope this will bring my long hip journey to an end. Im not sure it will, as it all seems so complex but I can hope.



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November 1, 2021 40 year old female

40 year old female

I am a 40 year old generally healthy female waiting on a bilateral hip replacement due to undiagnosed displasia. I was 27 when I was...
I am a 40 year old generally healthy female waiting on a bilateral hip replacement due to undiagnosed displasia. I was 27 when I was pregnant with my twin girls and this was the first sign of pain. As a child I couldn’t ever cross my legs but never in any pain. In my 30’s I had consistent lower back pain and after multiple doctors, chiropractors and physio, I was told it was just mechanical back pain. Eventually I could no longer run, exercise or even walk for long periods of time without constant pain in my back/buttocks . Around the age of 37 the pain travelled down further and the tops of my legs woukd hurt, I had less movement, getting up stairs became harder, bending down got harder. My doctor blew my constant complaints off and would state “you’re too young for chronic back pain. It left me feeling hopeless. Well my doctor retired and left his practice to a new doctor so off I went to explain my pain which I was quickly getting worse. I could no longer exercise at all, bending was impossible. I felt like I was a 37 year old stuck in an 80 year olds body. My doc sends me to a rheumatologist who then sends me for an mri on my back and hips. She diagnosis hip problems but she doesn’t delve deep into the issue. She referred me to an orthopedic surgeon who sat me down and gave me the answers I needed. (This was 2 years later). The surgeon said that I had hip dysplasia and that I had work lll the cartilidge in my hips out. I had tears and spurs and bad arthritis. He said he often didn’t see images like Mike in people under the age of 80. It was a relief yet scary because for so many years I had been treated like my pain was imagined and “not that bad”. Yet I couldn’t even sleep it was so horrible. I am currently waiting for a bilateral hip replacement and hoping for it in the next month or two. I’ve been told that there is the possibility that the pain I have elsewhere might not be cured but the groin pain will definitely be gone. When I sleep the pain is 360° around my body and my hips both ache and throb inside and out. I can no longer dance, shop, have intimate relations or enjoy any of the things I previously loved. I feel like I’ve been robbed of my life and I can’t wait for replacement to have it back! 




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October 20, 2021 1970’s

1970’s

I stumbled upon this site and couldn’t hesitate to tell my story. When I was still in my Mom’s belly she noticed I felt different... I stumbled upon this site and couldn't hesitate to tell my story. When I was still in my Mom's belly she noticed I felt different than her other 6 babies. I was breech. The Dr. let her stay in labor 2 days and both of us almost died. Mom didn't get a C-Section. It was 1970 and she would need to be sent to a larger City for such. I weighed almost 9 pnds and Mom had already told Dad, she thought we were going to die. Not only was I breech the cord was wrapped around my neck.  The Dr. pulled my  legs to get me out and the Dr. had to breath for me, before I took breathes on my own.  I did not walk at the age my other brothers and sisters did.  I was sway back and any time we would go somewhere, I would beg someone to carry me.  I was always tired and at times I would lay in the floor at stores.  After Moms Dr. told her I was just spoiled from having so many brothers and sisters. Mom was fed up, because she knew something was wrong with her baby.  I was taken to a specialty hospital and my hips were out of socket.  At 4 years of age, The doctor of Jackson Tennessee gave my parents 2 choices.  Traction or a procedure which had not been done, but he took my X-Ray to England(Mom always joked my butt had been to England).  I had surgery on each hip.  Followed by a full cast and then a brace. Once those were done, I had to learn to walk again with crutches.  I went back for checkups yearly, until I was 13.  I have never had any problems with my hips. I always enjoyed walking and running. When I reached the age 50, everything changed. Terrible pain in left hip and no longer could handle the treadmill.  I had an MRI and the MRI showed severe arthritis and a torn labrum.  The specialist then tells me I will need 2 hip replacements at some time, but he doesn't want to do this at 50. I've had two shots which I have to be put to sleep for, because it is crucial to get the shot in the correct spot without movement.  The first shot lasted 4 months and my 2nd shot hasn't lasted as long. I had it last month 9-20-21.  I am so discouraged, but I am so blessed to have never shown problems till now.  My Dad wasn't on board with having surgery.  Dad wanted to "take care" of me for the rest of my life. Mom pushed him to do the surgery.  Dad died of a massive heart attack when I was 24 and Mom always told him there was no guarantee he could take care of me. As I come to the end of my story, if any parent has a feeling something is not right with their child, go with your gut feeling. I pray all who have Hip Dysplasia get the help they deserve and I appreciate all who will pray for me as I step into my adult journey with my hips. Linda Wall-Tennessee age 51 next month



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October 20, 2021 Didn’t slow me down

Didn’t slow me down

I was born in 1970. When I started to walk my parents noticed that I was walking like a duck. So they took me to... I was born in 1970. When I started to walk my parents noticed that I was walking like a duck. So they took me to see a doctor on the military base that my dad was stationed at. They then sent me to a specialist. I was diagnosed with congenital dislocation of both hips. Where the ball of my femur was a rectangle shape on both sides and both sockets were extremely shallow. I went through multiple surgeries where the doctors broke both of my femurs and carved the femur ball and dug out the socket. I was placed in traction on and off for a long time. Had a cast from my chest to my toes with a steel bar between my legs. I had to learn how to walk 3 times. My last surgery I was about 4 years old. I was a huge football fan. And all I wanted to be was a football player. The doctors said that I would never be able to play sports.  The only problem I had other than the obvious of the surgeries and learning how to walk over and over. Was that I was a very active child. I would scoot around the house and outside in that cast. I kept breaking it. Very couple months I was getting a new cast. So the doctors put me in a what they said was an “unbreakable” cast. They said I was the first one with this condition to have this “unbreakable” cast. Well about a month later I was back at the hospital getting a new cast. I broke it sliding down the stairs outside. Then after all the healing the doctors advised my parents that I would have to have both hips replaced by the time I was 16. Well I’m 50 now and I still have the original pair. Now as the not being able to play sports growing up I played football,basketball, and baseball. When I turned 17 I joined the army. I had to get a waiver to join because this congenital dislocation of the hip is an automatic no go in the military. I ended up doing 20 years in the army. Went to airborne and air assault school did 2 combat tours.  But now I’m 50 years old. I do have knee and back issues. And I do walk with a slight waddle. I guess what I’m saying here is that no matter what the doctors say this condition will not slow you down it will not keep you from what you want to do. Unless you let it. I’m proof of that. Thank you for allowing me to share my story.



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July 12, 2021 Born this way

Born this way

I’m 53, born full breech vaginally (my poor mother) and diagnosed with bilateral dysplasia at birth. Pavlik harness at birth until I was 1.5-2 years... I’m 53, born full breech vaginally (my poor mother) and diagnosed with bilateral dysplasia at birth. Pavlik harness at birth until I was 1.5-2 years old. At that time I suppose the doctors felt there was no need for follow-ups. I was extremely flexible my whole life. I then married. I had 3 children, uneventful natural births. Then about 4 months after baby #3 I started with intractable pain. My hip would sublux just walking, stairs were scary and tortuous. I consulted an orthopedist and was advised my hips, primarily my right, were never addressed properly. My acetabulum never completely formed, in uterine, and I needed pelvic reconstruction. So with 3 small children, I was operated on where the surgeon sawed my pelvis in half and tilted it appropriately over my femoral head. He then placed me in a body cast to heel correctly. I remind you, I had 3 small children, oh and it was July in the NorthEast. HOTTTT! I was good after that for years, sort of. At the age of 50, I was told there was total bone erosion, no bone space, no cartilage. I handled the pain until I had no other choice. I had no desire to do physical therapy and med after med. I gave in and finally had my right hip replaced. It’s been pretty good. A few episodes of bursitis that steroid shots helped. But I’m grateful it was successful. Now I only need to hold off getting the left one done as long as possible. Good luck to you all, my fellow dysplasia hipsters!



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June 30, 2021 Harper Jade

Harper Jade

This is a story about my fearless warrior, Harper Jade. Harper was not breech and she is my second-born daughter. I was blessed with Harper...

This is a story about my fearless warrior, Harper Jade. Harper was not breech and she is my second-born daughter. I was blessed with Harper and and her older sister. When we brought her home after a long labor and eventual c-section delivery, I noticed she kept her legs close to her and didn’t like to stretch them out much. At her 1 week, 1 month, and 2 month checkups I asked about her legs. She had started moving them more often, but not kicking which I was concerned about. Doctors assured me things were fine and that she needed time to adjust based on her womb positioning and the delivery. Eventually, shortly after she turned 3 months old,  I became too concerned to let it go and requested an appointment to have her evaluated further. We were referred to a neurologist that requested an x-ray. That day, our lives changed, Harper’s x-rays showed both of her hips were dislocated. We immediately consulted with an orthopedic surgeon and they felt she was too old to be placed in a harness and due to the dislocation of both hips they didn’t think it would be very effective. We traveled to receive opinions from other pediatric orthopedic surgeons and requested all medical records and X-rays to consult with doctors via email to ensure we educated ourselves on what this diagnosis was, the best next steps, and how to navigate it. At 4 months, Harper had an arthrogram and an attempt for a close reduction, but it was unsuccessful. The trusted orthopedic surgeon we went with and the others we consulted felt Harper was too young for an open reduction at that time, so we had to wait. Harper has always had the best attitude, even at just 4 months. So we waited. It was the hardest thing to do. She continued to grow, but standing and walking she wasn’t quite able. When we attempted to put her on her feet she would buckle at the knees or pull her legs up. She most definitely could win awards for the fastest crawler though! And fearless climber!  At just about a day or two past 15 months, it was the big day. Harper was to have her surgery. The plan was to perform one hip at a time and she would be placed in a hip spica cast then in 4 weeks she was to come back for surgery on the other hip and then placed in a hip spica cast for another 6 weeks. We were told to pack an overnight bag as the surgery would take awhile. We were given a pager that would alert us when the operation started and alert us with updates. About 30 minutes after we were alerted that the surgery started, we received another page that the surgeon would be meeting us in a few minutes with an update. My heart sank. It was the scariest moment in my life so far. As we jumped up out of the chairs, we saw  Harper’s surgeon come out into the waiting room. He immediately said “she is doing great” and said he had good news. They were able to position Harper’s hip more easily than expected, more like a close reduction process that was attempted when she was 3 months. He informed us that they wanted to attempt the other hip to see if the same would occur. We gave permission for them to proceed. It was successful! Harper was placed in a purple hip spica cast from her chest down to her toes for 8 very long weeks. We got really creative with outdoor wagon rides on top of bean bags (lots of bean bags), lots of homemade popsicles, and tons of books. Harper was able to get the spica cast removed after 8 weeks and was placed in a Rhino brace for 4 weeks. She was removed from the Rhino brace after 4 weeks and started physical therapy 4 weeks later. Harper continues to go to physical therapy twice a week, one day we do aquatic therapy and the other day we do land therapy. Harper recently received leg braces that we continue to adjust to. Harper is now standing with support (without the leg braces) and pulls to stand consistently. Her resilience, determination, bubbly personality, and beautiful smile keep me going. She is our superhero and continues to get stronger every day. We are grateful for this opportunity to share her story, hope to continue sharing. and hope that it helps others. 





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June 14, 2021 Emergency hip replacement at 49

Emergency hip replacement at 49

I had been suffering from pain since my 20s in my right leg. I was diagnosed with sciatica at 24 and began regular consumption of... I had been suffering from pain since my 20s in my right leg. I was diagnosed with sciatica at 24 and began regular consumption of ibuprofen to manage the pain. Over the years I requested 2 spinal xrays and an MRI scan of my spine to try to find out what was causing the 'sciatica'.  After the MRI scan showed nothing, I was encouraged to keep exercising and stretching. I said to my doctor 'are you sure I don't have arthritis' and he said 'it can't  be arthritis because you feel better after exercise.'  5 years later I asked for a hip x ray because of a grinding sound. The physio said they thought maybe I had very mild wear and tear. On the day of the xray, the radiologist couldn't hide his shock and said 'have you ever had your hip xrayed before?' No, I said, why? He tells me they look very abnormal. The next day the physio calls to tell me I need an emergency hip replacement! After the surgery, the surgeon explained that I had hip dysplasia bringing on early onset osteoarthritis. My new joint was screwed into my pelvis to give stability. All the pain in the left leg has finally gone after all these years. The right hip has a little bit of cartilage left, so need a hip replacement in the future.  It amazes me that despite having been in constant pain for 25 years, with my leg 'giving way' when walking, having a limp that everyone commented on, sleepless nights, etc etc....it took ME to suggest a hip xray, not my doctors or physios! More education is needed about hip dysplasia.



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June 1, 2021 Ben’s Story

Ben’s Story

Hi Everyone I was diagnosed with hip dysplasia on my left hip as well as 3 Femur/Acetabular Impingements on both hips just before my 22nd... Hi Everyone I was diagnosed with hip dysplasia on my left hip as well as 3 Femur/Acetabular Impingements on both hips just before my 22nd birthday in 2020 when my Rheumatologist requested MRIs and X-rays on the hip, following debilitating pain from bone rubbing on bone and frequent dislocations (Pre-existing RA didn't help).  I had my first hip arthroscopy to assess the damage of the dysplasia and also shave the impingements off. One month later I had my Osteotomy, and I'm gonna be blunt, the first 2 weeks after leaving the hospital were very harsh, pain management once you get home can become very difficult (I should also note I have a high tolerance to most medications I've been on), and the Endone given to me was barely suppressing the pain. But I can assure anyone who is getting an Osteotomy to treat their Dysplasia that once you pass those first few gruelling weeks, recovery goes very quickly, I'm now 10 weeks post-op and feeling great, got off the crutches at week 7 and walking fine now. P.S. I do still experience some movement at the bottom cut in the bone, and it can rub bone on bone sometimes, it hasn't quite started fusing yet, but that's rare and I know what movement generally triggers that rubbing P.P.S. The second arthroscopy later this year



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May 26, 2021 Nyra’s ddh journey

Nyra’s ddh journey

My daughter nyra was diagnosed with ddh at her birth as a click in her right hip was felt. We were reffered to bc childrens... My daughter nyra was diagnosed with ddh at her birth as a click in her right hip was felt. We were reffered to bc childrens hospital in vancouver. What a great team of doctors and nurses. Her ultrasound showed her right hip at 49 and left at 48 degrees. So she was put into palvik harness for 24/7 for a week and then she was switched to 23/7 allowing 1 hour for bath time. It was the one of the worst feelings seeing our princess in a pelvic harness. They took of her cute little outfit off her and she was just in a diaper for a week. But a week after she was allowed to wear a onesie that clips on but no pants. We got use to it after a week. I was told the longer i keep it on her better it is going to work. So i would only take it off for bath 3 times a week. After 4 weeks nyra had improved her hip angles to right 54 and left to 53 degrees. Doctor asked us to keep it on for another 6 weeks 23/7. We were expecting it to just come off after 6 weeks as she made such good progress in first 4 weeks. But nah, the numbers only went up to R 56/ L 55. I was confused and upset. Doctor now thinks that she had grown strong for pelvic harness, they put her into a Rhino brace. This thing looked bulky and scary. My feelings went back to the day i saw palvic harness. I cried like a baby myself. She was going to be in rhino fir another 6 weeks. I was upset, but i knew the doctors and everyone was in my daughters favour and were trying to help her. I convinced myself that better to see her in harness or brace now then see her struggling in walking for life. I did the same with brace, kept it on as long as possible. And kept my self calm while putting it on and off. If you don't make a big deal out of it, baby won't either. After 6 weeks, she had her xray and here comes the good news!! Her hip angles were in normal range. R 27/ L 25 ( normal under 30, different in xray and ultrasound). Now doctor recommended to leave the brace on for night time only, so that bones can harden and ddh does not reoccur. We go back after 6 months now in november. Its quite a journey but staying positive and listening to the doctors is the only advice i can give. Keep it on if asked to. I have seen videos where mothers were upset and did not keep the brace on as recommended in the end spoiled it for their babies and worsened the condition. 



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May 18, 2021 Leah’s Story

Leah’s Story

My daughter Leah was diagnosed with Hip Dysplasia at birth. At 10 weeks old she was placed in a pelvic harness to gently position her... My daughter Leah was diagnosed with Hip Dysplasia at birth. At 10 weeks old she was placed in a pelvic harness to gently position her hips so they can align in the joint, and to keep the hip joint secure. The doctors had said that in some cases Hip Dysplasia can correct itself, Unfortunately that was not the case for Leah. When Leah was 9 months old the doctors discovered her condition had worsened. Leah struggled to crawl, walk, and maneuver the way that she should have been able to. She had her first surgical procedure at only 14 moths old. She endured a Pelvic osteotomy and was placed in a Spica cast. She spent a total of 4 months in this uncomfortable position. She had to undergo a total of 3 surgical procedures during this time. During this time Leah experienced a lot of anxiety and even panic attacks. In order to keep Leah clean I would give her sponge baths and constantly change her diaper because diapering her in this position was complicated and had to be done often in order to keep her cast clean. Everything was just so difficult with her being in a full body cast. I had to go out and buy a huge bean bag chair for her to sit on. I also had to reconstruct a stroller in order for her to be able to sit in it. There was even a night that she had a stomach virus and I had to wrap her legs up with towels just so she wouldn't throw on herself and get her cast dirty. She wasn't even able to eat certain things because in the event that she choked there was no way for me to perform the Heimlich remover. It was absolutely devastating seeing my daughter going through this. She wasn't physically or mentally developing the way she should have been for her age because of all of the trauma she experienced.  When her cast finally came off she was thrilled and overwhelmed with joy. Her father was in the United States Marine Corps so he was unable to be by her side because he was on a deployment during this time, but he was able to surprise Leah the day her cast came off which really added to her excitement. Leah did finally start to walk after months of therapy but something just wasn't right. When I was pregnant expecting my second child we found out that Leah would have to undergo even more surgery and unfortunately  this time more evasive.  Now Leah was closer to being 3 years old and she would need to have a pelvic osteotomy and femoral osteotomy with bone graft followed by 6 weeks of being in a Spica cast. This broke me in a way I've never been broken before. I almost didn't go through with it. I almost couldn't bare to see my precious little girl in so much pain. I can only imagine how hard this was for her. It was like her spirit was crushed. I was so sick to my stomach with nerves when we brought her in for surgery I threw up. Leah was in a lot of pain when she woke up but at least this time she had both me and her father there for her. Recovery was tough but she made it through again like the champion that she is. She had to learn how to walk now for the third time. She is now almost 5 years old and she still experiences some post traumatic stress from everything she went through. For a while she was terrified of doctors but she is getting better all the time.  I am a strong advocate for  raising awareness about Hip Dysplasia because this can be very common but it is not often spoken about. I am thankful that my daughter is able to run, jump, climb and do anything she desires to do. There was a time where I didn't think she would be able to do any of that. Every time we go to the park and I see her play it truly brings joy to my heart because I remember how she would struggle.  I look back on all of the tears, appointments, sleepless nights, missed milestones, triumphs, and I am thankful because it was all worth it now. 



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April 14, 2021 Cynthia’s story

Cynthia’s story

I’m Cynthia from NYC. I’m 50 years old. Until a year ago I didn’t think hip dysplasia was a thing in adults. Nor could I... I'm Cynthia from NYC. I'm 50 years old. Until a year ago I didn't think hip dysplasia was a thing in adults. Nor could I forsee how it would effect my life. I've lived my life on 6 inch heels.  I prided myself on the fact that not only could I walk in them daily, I could run and even play handball in my heels. I've had two children via natural birth and I have always enjoyed hiking.  Four years ago I began to have trouble walking and terrible pain in my left leg. After numerous doctors who did not come up with a reason for the pain I decided to change my lifestyle, eat right, exercise,  take plenty of vitamins,  daily boot camp classes and became an avid runner. The pain disappeared.  I was in the best shape of my life. I had incredible muscle tone and ran 6 miles a day for the next two years. As suddenly as the pain disappeared one day it returned and I was again left with being unable to walk. Following another year of misdiagnosis with tendinitis I finally found a Dr. Who diagnosed Hip arthritis and began cortisone shots. Still no one mentioned hip dysplasia.  When the shots stopped working the Dr. Recommended I see a surgeon. This was the first time I had heard I had dysplasia with arthritic cysts and needed immediate surgery. No one mentioned this would mean the same result is likely in the other leg. After a quick recovery, I thought I was through the worst and pain free and could resume my life.  This was five months ago. Last month, just as suddenly the pain in my right hip began. I knew what this meant but as they say hope springs eternal.  Hope was not to be. I am going in for a second surgery next week. 50 years old, two terrible scars two fake hips and the possibilities of further health issues. No one likes to mention the vanity part of this. But to me it is as important if not more devastating then the health and pain issue. I dont want to not be able to do boot camp classes, I don't want to be out of shape and I don't want to never wear a bathing suit again. Yet here I am! And its devastating. I'm sure I will get through this, but I never want to see another Jlo or Paula Abdul commercial again 😃😃



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April 14, 2021 Life with a dislocated hip

Life with a dislocated hip

Hello. My name is Melissa. I was born in 1968 so I guess that makes me a long hauler. When I started walking I was... Hello. My name is Melissa. I was born in 1968 so I guess that makes me a long hauler. When I started walking I was flat-footed on the right but on my toes on the left. Our family doctor sent us to the best orthopedist around. Having a doc you trust, for me, is the most important thing about living with this. I was born without a left hip socket. That ball that's supposed to be round and live comfortably in it's socket home was flat. No socket, no ball. Everything just floating around in there with only muscles and ligaments holding it together. My first surgery, I was 2. Woke up to the first of MANY casts that started at my ribs, covered my left leg completely, the right to my knee. A bar between my knees and guess what? I'm a frog for the next 6 weeks. Thankfully my grandma was a seamstress and she made me awesome tie-on undies. Maggie-April, that pic of you in the blue cast? I'm with ya girl, except mine were plain boring white. And plaster. Uugghh Hot, itchy, sweaty. Everybody clear the room when they cut that thing off!! I taught myself how to go up and down stairs, on and off of everything. When I was 5 I was on my swing set. Slipped off and that half cast on my right leg snapped the bone below my kneecap. Hello full cast. I've read my records. Cast would come off and the leg went right back where it wasn't supposed to be. I had 2 or 3 surgeries a year till I was about 10. I always went in the hospital days before surgery to be put in traction. That's a screw that went thru my leg right below my knee. It was attached to weights hanging off the bed. This was supposed to stretch my muscles and pull everything where it needed to be so that in surgery he could put pins in to hold it all in place. My muscles must be super elastic cuz the cast would come off and the leg went right back up.  My leg length discrepancy was 3 inches. Saddle Oxfords became my only shoes because the heel could be built up. I've always preferred to be barefoot so walking on my toes all those years gave my left foot an extremely high arch and a round heel with no callous cuz it never touched the ground.  One day I was walking toward a store and saw myself in the glass reflection. Until then I had no idea how bad my limp was. When I stepped with my left leg I leaned so far I was almost parallel to the ground. Thankfully I was, and still am, under 5ft tall.  I hated summer because of shorts and bathing suits. Not sure when they started using staples but all of my incisions were closed with stitches. They don't make pretty scars. My first hip replacement was at 13. He had to cut out a lot of muscle that had knotted and grown into my hip cavity. Lot's of screaming after that one. A month after highschool graduation he removed 2 1/2 inches of bone from my right thigh to correct the length difference. My second hip replacement I was 29. In 2012 I had to have the ball and liner replaced. Doc told me I have no femur bone left. It's all what I call the "railroad spike", which is part of the implant. I have very little pelvic bone(pubic bone?) on that side. We're hoping this all lasts the rest of my life.  I started preterm labor with my son at 21 weeks. 15 weeks of bed rest later I had what is called prodromal labor for 5 days before finally a c-section. I don't know how much of that was because of my hip and pelvis but I do know that my pelvis wouldn't open wide enough for his tiny little head to get thru. I have chronic pain in my back, hip and leg. I take 3 different pain meds to function. These meds caused a sleep disorder called Idiopathic Hypersomnia. Basically without a wake up pill every morning I would be Sleeping Beauty.  I will always have a limp but I am immensely grateful that I can walk. I will always have pain but I will keep going till I can't. People still stare at me like a limp also means my eyes are broken so I stare back and smile. I covered those scars with beautiful tattoos and now show off what I used to hide.  It ain't always been fun, it ain't never been fair. But it's my life and I own it proudly. Melissa Morrow



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April 13, 2021 From a spica cast to a national champion.

From a spica cast to a national champion.

My story is far from dissimilar to others affected with Hip Dysplasia, but my hope is to inspire and connect with parents and patients through... My story is far from dissimilar to others affected with Hip Dysplasia, but my hope is to inspire and connect with parents and patients through this platform. Diagnosed at 18 months with Bilateral Hip Dysplasia, my parents took me to various orthopedic doctors who all were in agreement I needed to have surgery. The five surgeries that ensued over the next four years (open reductions on both hips and pelvic osteotomy on both hips) left me spending an inordinate amount of my early years in spica casts, relearning how to walk on three separate occasions, and endless hours of physical therapy. While some of my recollections from this time are fuzzy due to time passing, I still have clear memories of the frustration of being "stuck" in the cast and frustration of being unable to join others in more normal child play. My parents had deeper concerns during this time and have more detailed memories of the worry if their daughter was ever going to walk or be able to run without pain.  Thankfully due to a jerry-rigged chair my mother had made, I was able to sit up and be more comfortable and independent. My surgeries were successful and although I am due for a follow up to take out wires and pins, I have let a completely active life to this point and have thrived athletically traveling and competing across the country on 2000 pound animals.  Because of the positioning of the spica cast and my love for animals, sitting on and enjoying riding a horse with my mom's help was quite comfortable for me even when I was in-between surgeries and in a spica cast or brace. The hundreds of merry go round rides I begged for, or pony rides at the local farmer's market fueled a young love of horses and riding.   Once my hip dysplasia surgeries were completed and my physical therapy had strengthen my wobbly legs, I began real horseback riding lessons which continue today. As one of the top 100 riders in the country for my age group (18 and under), it is now my time to give back in a meaningful way to the orthopedic community and other patients or patients families alike.  I have initial plans to share with other patients or doctors for a similar chair that helped me gain independence and do more normal actives for my age as well as attend preschool and kindergarten with others. I've scoured the internet and I've still yet to see a safe, child friendly chair that can be easily reproduced for others. While COVID has slowed my final patterns to distribute, please feel free to reach out and I will share with you my initial designs. My plan is to post the final designs once appropriate fabricators have signed off on dimensions.  Thank you. Sophie 



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April 13, 2021 Sophie’s Story

Sophie’s Story

At the age of 18 months, I walked funny and fell a lot which led my mother’s intuition into the pediatrician’s office and ultimately to... At the age of 18 months, I walked funny and fell a lot which led my mother’s intuition into the pediatrician’s office and ultimately to the diagnosis of bilateral hip dysplasia. The treatment plan included five successful hip surgeries over the next four years of my life including open reduction on both hips and pelvic osteotomies for both sides. While my memory is fuzzy at times of my life in spica casts, I do remember the distinct feeling of being “stuck” and the general frustration of not being able to play like other children got to do. My parents have a far different memory of worries including wondering if I would be able to walk and run without pain. Becoming a top national equestrian athlete and riding 2000-pound animals is something I’m certain seemed unachievable given my diagnosis from doctors, but being hampered physically early on just made me more resilient and determined to overcome obstacles in my life physical or otherwise. I’ve always known I would need to connect with the orthopedic world and other patients at some point in my life. Due to the spica cast design, riding a horse at the local farmer’s markets or taking countless rides on merry-go-rounds with the help of my parents were a few of my favorite activities while I was unable to walk or keep up with other children. Seeing me upright and so happy to be active, my mom and neighbor came up with an idea. They jerry-rigged a chair for me to use which allowed me independence and the ability to sit upright and do more normal age-appropriate activities including going to preschool and kindergarten. The chair provided enough support and security to my body without compromising the spica cast and its’ intentions and allowed me to be pushed up to a table so I could eat and do arts, crafts, and gain a new independence I had never had before. I’ve scoured the internet for a chair similar to mine, but I have yet to come across a design that is child friendly and can be put together by a handy parent or friend of the family with materials found at the local hardware and craft stores. While COVID has slowed my ability to finalize chair dimensions and details with a fabricator and experts, I do have drawings and ideas, and I would be happy to share my insights. My hope is that sharing my story of a child with wobbly legs and spica casts that turns into a national athlete will inspire patients and parents alike. Please feel free to contact me at hipdysplasiasophie@gmail.com.



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January 15, 2021 Jordyn Dillabough

Jordyn Dillabough

My name is Jordyn Dillabough, I am 20 years old and live in Winnipeg, Canada. I was first diagnosed with hip dysplasia at two months... My name is Jordyn Dillabough, I am 20 years old and live in Winnipeg, Canada. I was first diagnosed with hip dysplasia at two months old. After a few months of wearing a brace post diagnoses it was thought to have been self corrected. Growing up I do not remember having pain or noticing anything different. It was after I ran at a track and field event in middle school that someone watching in the stands pointed out my different gait (they worked in healthcare) to my mom. This began the process of being diagnosed with moderate to severe hip dysplasia for a second time. After meeting with an orthopaedic surgeon at the age of 12 it was decided that I needed to undergo a pelvic and femoral osteotomy on my right side. On August 22nd, 2013 the surgery was performed and deemed successful. After using a wheelchair, walker, crutches, one crutch, and then a cane I eventually started to walk without any aid during February of 2014. After a few more months of recovery I returned to normal life! However, during the summer of 2018 my left hip began to give me trouble. Overtime I developed bursitis in both of my hips, arthritis in my left knee and watched my overall health begin to deteriorate. At 18 years old getting out of bed, driving, picking up groceries at the grocery store, etc. became difficult to the point where more often than not I could not do it. I was declared a candidate for a periacetabular osteotomy in Calgary, Alberta but unfortunately due to the backlog of elective surgeries from the second wave of covid-19, the waitlist became terribly long. On November 27th, 2020 I chose to have a full left hip replacement. My surgery was deemed essential and I was able to finally have the operation that I had waited over two years to have. It is currently January 14th, 2021 as I write this and I could not be more excited to start living a less painful day to day life. The emotional, mental, and physical toll that hip dysplasia takes is immeasurable, however, the people that you meet in the waiting rooms, the relationships built with physiotherapists, family doctors, surgeons, and specialists is also like no other. The community will last a lifetime, and rest assured that there will be a better tomorrow on days where the pain seems unbearable.



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January 15, 2021 My journey with hip dysplasia

My journey with hip dysplasia

At 36 years old my hips started to feel like they were popping out of place.  I would stand on something (usually a gas pump... At 36 years old my hips started to feel like they were popping out of place.  I would stand on something (usually a gas pump island and let my leg hang and swing it like a pendulum- this would usually relieve the pressure.)  After about a year of this, it stopped working.  I spoke with a friend that suggested a chiropractic technique where I would have my husband push and pull my knees together, and then lift my legs to get my hips to go back in.   A couple times a week we'd do this and we'd get the resounding CLUNK and an almost instant relief.   After researching dislocated hips, I found the hips don't dislocate, and if they do it is unbearable pain that makes it so you are unable to walk.  I thought I was going crazy.  How am I getting a very audible clunk and relief if they're not out?  After about 2 years, my hips stopped feeling like they'd go back in.  We weren't getting the CLUNK or the relief.  It just hurt all the time. I finally got tired of the pain and decided to talk to my family around Christmas time - wondering if any of them had the same pain.  I said it was a sharp pain in my groin and that it felt like they dislocated. My grandma said that her hip pain was in the same location and she had had a hip replacement in the mid 90's.  I told them I was afraid to go in because I was so sure they'd tell me I needed a hip replacement.   My mom told me "They will never tell you you need a hip replacement, you're too young!"   Of course!  I'm too young.  I decided it was time to see a doctor about it.  By this time, I was in extreme pain and having a hard time walking without a very noticeable limp.  I went to my Primary doctor and she said she wasn't sure, so she wanted me to see and orthopedic doctor.  She was extremely helpful and kind. January 2020, one month before my 4oth birthday, I was in the Ortho office.  With me sitting on the table,  the doctor said you've got hip dysplasia in both hips.  Most likely undiagnosed since birth.  (First born child, daughter, and born breech.)  You need to lose about 100 pounds before I will operate.  You'll eventually need both hips replaced.  Take a strong prescribed anti-inflammatory 2xs a day.  I'll have you get and MRI and I'll make a follow up appointment with you.   And then COVID hit.  We did a tele-visit which consisted of him confirming I had hip dysplasia and I need to lose weight.  He then suggested I schedule another tele-visit.    I was tired of being told the same thing repeatedly and nothing being done. I visited with my primary doctor again and I started a weight loss plan.  I lost 30 pounds.  But I could still barely walk, and both hips were really hurting. I was prescribed vicodin, which I hated to take, and would only take when I absolutely needed it.  And believe me, there were days when I couldn't walk without taking it.  I decided it was time to take my health into my own hands.  I asked for a referral to a Dr. in Bellevue, Washington.   I made my appointment in June and gathered all of my records.   I reviewed my MRI findings and realized that the original doctor didn't tell me that I also had arthritis, labral tears, massive bone spurs, and cysts in both hips! The doctor in Bellevue came highly recommended from a friend...she informed me he would indeed tell me to lose weight.  I knew this was always going to be a topic of conversation - every doctor appointment I'd ever attended, it was mentioned.    But I was proud that I had already lost 30 pounds in a short amount of time.  That didn't last long.  The whole appointment the doctor talked about my weight.  He asked for new Xrays as my previous Xrays were now 6 months old.  He didn't even look at the MRI or the report of the MRI.  After looking at the new Xrays, he said normally he "doesn't like to do replacements on people my age or my size", but he had no choice. My left hip had deteriorated to being completely bone on bone and a replacement was needed.  He asked if I wanted to wait until I had a chance to lose more weight before I did the surgery.  I scheduled the surgery for November.  He found that I was taking vicodin and scolded me saying that they prescribe that after surgery and if I'm taking it now, I won't have anything for after surgery that will work and I need to immediately stop taking it.  And I would also need to stop all anti-inflammatories 2 weeks prior to surgery.    HOW WAS I GOING TO BE ABLE TO WALK?!  (Let me tell you - It was VERY difficult!) I lost another 20 pounds in the following months.  The weekend before my surgery I wanted to ride my horse one last time because who knew when I'd be able to do it again. (I had only ridden once in May and hurt terribly afterwards.)   My husband asked me not to because he didn't want anything to happen to my hip so that it couldn't be repaired.  I saddled my horse anyway, and walked her across my pasture.  I worked her for 15 minutes, which consisted of me taking small steps in a circle.  I started to walk back across the pasture and was in tears.  I hurt so badly that I couldn't even think of riding.  My husband unsaddled my horse and I sat in the car crying.  Tears of pain, anger, frustration, sadness....it all came out.  I had no life.  I couldn't walk!  I couldn't play with my 10 year old daughter.  I couldn't stand for more than 5 minutes.  I knew I needed this to be done. Many people had asked if I was sure that I wanted this surgeon to operate on me, given his bedside manner.  I really questioned it.  Would he treat me like a cow at slaughter on the operating table?  Not caring about anything that he did because I'm gross?  But then I thought about it...his ego wouldn't let him do a bad job.  He'd have a whole room full of nurses and anesthesiologists watching him.  His reputation would be in this.  I had also read a statement on line that hit me like a ton of bricks....it said  "Would you rather have a person with terrible bedside manners, who is the very best at what they do, and do it so often they could almost be blind folded while doing it - or someone that has the best bedside manners ever, but they need someone there to direct their every move, and have only done this surgery a hand full of times?"  I knew I was making the right decision. Monday, November 2nd...I get checked in.  I'm super nervous.  I have no pain tolerance and a high tolerance to medication.  Not a good combination.  I get into the OR and I start crying and sobbing.  I'm reassured that everything will be ok.   I'm told now I'll get very sleepy.   I remember thinking "But I'm not getting sleepy!  Don't start yet!!"   The next thing I know, I'm waking up.  At first there wasn't much pain at all.  But the more awake I became, the more it hurt.  I ended up staying in the hospital over night to control the pain.   That day I swore I'd never get my right hip replaced.    By that Friday, I am off of all pain medication!   At 2 weeks post op, I said I'll wait as long as I possibly can until I get my right hip replaced.   At my 6 week follow up, I asked to schedule my right hip replacement!   And 5 days before my 41st birthday, I will have my right hip replaced!   Happy birthday to me! I'm so glad that I've done this and I can't wait to be on horseback this summer.  My number one  suggestion is to not wait as long as I did.  And don't be afraid to take your own health into your hands!



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January 15, 2021 32 y/o Woman (DDH, Cysts & Labrum Tear)

32 y/o Woman (DDH, Cysts & Labrum Tear)

i am 32.. 3 years ago i had my son which triggered my hip dysplashia, full term I had stabbing groin pain and could hardly... i am 32.. 3 years ago i had my son which triggered my hip dysplashia, full term I had stabbing groin pain and could hardly walk,  i was always  fit active and healthy. After giving birth I was ok, the pain slowly started to return, during exercise I felt a pain in my groin in time it got worse, over a few months it got extreme ,  a year or so  after they put me through physio which didn’t help but the pain continued and started to have limitations from my waist down, I then had an x-ray where they found dysplasia, at this point i could still walk and do normal day to day things. 4 months later I had a MRI where they found a cyst. But that wasn’t it, results took so long i seen a private surgeon, he seen the dysplasia and cysts inside and outside the bone as well as a labral tear.his input to my GP have now  refered to have the cysts drained but only from seeing a private surgeon. All tho I am still waiting I feel more positive.  if i didnt see this private surgeon i would still be on the waiting list for the young persons hip specialist where i am still awaiting an appointment. i am now almost completley immobile, i can limp a small distance, have 2 children, cant run , cant walk far , cant do any of the things i use to do with my kids , ive been signed off work for 8 weeks was suppose to start my nurse training next year. its ruining my life to be honest. Be so nice to hear other people s stories I’m 32 and have so many plans



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November 25, 2020 Katherine

Katherine

Hello- I am writing this story with the hope of receiving some insight and advice from those who have been in a similar position. I...

Hello-

I am writing this story with the hope of receiving some insight and advice from those who have been in a similar position.

I am a 38yo female who has always been very active. 10 years ago I tore my labrum in my left hip and a scope fixed it without any problems.

Last fall, I started having pain in my right hip that I assumed was sports related and another tear. After learning I have moderate hip dysplasia and a torn labrum, the doctor has told me I have two options – the first is doing a scope to fix the tear. He said this is 75% likely to fix the pain but he only thinks it will last 1-2 years at which time I may be faced with PAO or THR. The other is the full PAO which is 5-7 months of recovery. The PAO is terrifying to me and I am leaning towards the scope, although I do not have much information as to what the prognosis will be post surgery after a year or two.

Has anyone made this decision and if you have, what were the results?

Thank you!
Katharine





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November 25, 2020 Katie

Katie

I’d like to share my story and share awareness. For the past 12 years I’ve been too uncomfortable with my scars and lost my confidence...

I’d like to share my story and share awareness. For the past 12 years I’ve been too uncomfortable with my scars and lost my confidence when I was aged 12. Over the last 12 years, I’ve had 4 operations and I’m only 16, and that’s all because of a doctor that didn’t go their job properly. As parents know, doctors are suppose to check your child’s hips and keep on checking them further through their life as a child. When my parents kept taking me and saying there was something wrong, my parents got told they were paranoid and I was just lazy and didn’t want to walk. My parents never gave up and kept taking me to the doctor demanding that there’s something wrong. Eventually when I turned age 4, my parents took me to a doctor that wasn’t my original doctor and he knew there was something wrong with me straight away and sent me to a hospital in Stoke-on-Trent. Doctors spent 8 hours operating on me, they broke my leg to remove some bone and put a metal plate and rods into my leg and I was in a full body cast for months. I couldn’t move unless people picked me up and moved me around, at age 4 I couldn’t even run around like all other kids could. Eventually, when I was taken out of a full body cast, I had another operation to remove the rods in my leg but the metal plate stayed in and they put me in a half cast and I had to learn to walk and run all over again. I eventually did it, it was hard believe me but I did it. I can’t go on really long walks as my leg aches and gives in. I don’t walk like many people do, my leg and foot are twisted and my hip isn’t a normal shape like the other one. Then in October 2018, aged 15, I had an injection operation at a hospital in Wolverhampton, where they injected something into the bone of my hip to see if the pain would go away as I was getting chronic pain. Unfortunately that didn’t help much. Then in March 2019, still aged 15, I had an operation to cut open my leg again to remove the metal plate that was in there for 11 and a half years. I spent a night in hospital and was on crutches for a week and luckily managed to start walking and running quickly again after about 2/3 weeks but it was hardest when I just come out of hospital as it took me ages to put clothes on, put socks and shoes on, take showers and go down or up the stairs. I went through hell. Yes I’m different, my hip is different to others and I walk different to others, but that doesn’t make me any less human. I’ve been bullied and had many nasty comments about myself but also had supportive and caring ones. People have got to realise scars are beautiful and they’re not unusual. Yes, I do admit, I do have my bad days, but then I remember… I have hip dysplasia and I’m a warrior for what I’ve been through and so is everybody else who has hip dysplasia. I would’ve only had to go through one small operation when a baby and then that would’ve been it but because I had a lazy doctor I’ve had to go through all this and will have to go through further operations and even a hip replacement. All I want to say is, to all parents, please please please make sure you and your doctor checks your child’s hips, I cannot stress it enough! You and your doctor could save your child having to go through what me and my family have had to go through. The pain, the suffering, the upset etc. I’m sharing my story out of confidence and sharing awareness because after 12, nearly 13 years, I’ve realised my importance, I’m only human and I’m strong for what I’ve been through! That takes a lot of guts for me to say. To everyone who has this condition I’m proud of you for who you are and what you’ve been through and remember, never forget your importance and your beautiful! Our scars are beautiful! Don’t be afraid to show them off! Thank you for taking your time to read this, it means the world to me. #hipdysplasia #congenitalhipdislocation #hipdysplasiaawareness 💓💙





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November 25, 2020 Hannah

Hannah

Hey everyone! My name is Hannah and I am 17 years old. I am currently a patient at Children’s Healthcare of Atlanta. My journey with...

Hey everyone! My name is Hannah and I am 17 years old. I am currently a patient at Children’s Healthcare of Atlanta. My journey with hip dysplasia began seven years ago when I was going into 5th grade. It was summertime. I was involved in competitive dance, and I also played golf several days a week with my family. On this particular day, I had been to golf camp that morning and then went to speed and agility training that evening. I remember sitting at my kitchen table that night and my mom asked me to take the dog out, so I stood up to walk outside but immediately started screaming. I had a sharp, shooting pain down the side of my left leg. We went to Urgent Care and I was told that I had a sprained hip. By the end of that summer, I was still struggling with a lot of pain. We went to the doctor and I was diagnosed with bursitis and snapping hip. I did about a month of PT and still was not improving. We went to see a chiropractor that we were referred to by a friend. He was also a physical therapist, so he worked with me a lot on strengthening my hip to see if I could get better. No improvement. I continued to get worse and eventually could not walk, so crutches it was. The chiropractor was examining my hip and said that he could feel a torn muscle in my left hip and that we needed to go see a different orthopedist, so we did. The orthopedist sent me to a different physical therapist, but I still could not walk. We then went to yet another orthopedist. He ordered an MRI and found that I did have a torn muscle, evidence of a fracture, and I was also missing a muscle in my left hip. So more physical therapy. After two months of PT and four months on crutches, I was able to walk again! I got stronger and really was not struggling with my hip at all anymore! In 6th grade, I went back to dancing, but after a few months, my hip started bothering me again. I decided to stop dancing, and that was very helpful. The pain went away and I was able to do most ‘kid’ things.

In 7th grade, I decided to try something new and play lacrosse. I fell in love with lacrosse. My first season went so smoothly. No hip problems at all. Spring season came around and I started struggling with sharp pain and clicking/popping in the same hip. Ugh. I was very frustrated that the pain had come back, but I pushed through and finished the season.

I took the summer to rest, but the issues only worsened. We went to see a different doctor and they recommended that we try another round of physical therapy, so that is what we did. I loved my physical therapist and really trusted her. After several weeks, she talked to the doctor and they agreed that an MRI would be helpful. The MRI showed fraying in my labrum, but the surgeon was not comfortable operating. We tried several different injections into my hip to relieve the pain, but nothing really fixed the problem.
In December of my 8th grade year, my physical therapist referred us to a hip specialist in Atlanta to get a second opinion. After an exam and one X-Ray, he diagnosed me with bilateral hip dysplasia and FAI (femoral acetabular impingement). He also ordered an MRI that confirmed a full tear in my labrum. In February 2017, I had a hip arthroscopy to repair my labrum and correct my FAI. The surgery was a success, but about eight months later, it was decided that I would need the PAO on my left hip for my hip dysplasia. In February 2018, I had my LPAO, and it was successful! I felt SO GOOD that summer, almost like a new person. During my sophomore year, I decided to try something new and tryout for my school’s swim team. I loved swim so much. During swim, I struggled a little bit with my hip, and I even had my screws (from the PAO) removed in the middle of swim season and took three weeks off, but I came back to finish the season!

During the summer going into my junior, I was still struggling with some pain, and I started walking very weirdly. My left leg would swing out to the side every time I took a step. This lasted several months but improved after several weeks of wearing a brace I had from my arthroscopy. I went back to see my surgeon and he decided to order a fresh MRI to see what was going on. The MRI showed some damage to my labrum and that I also had a lot of scar tissue and adhesions in my hip. He did a steroid injection, and it worked so he knew that a repeat hip arthroscopy would probably be best. In February 2020, I had surgery to repair my labrum, scrape out adhesions, and shave off a little bit of an impingement on my femur. The surgery was very successful, and my doctor was very pleased with how it went. He was confident that this was my last surgery! My recovery went smoothly, and I was improving slowly, but surely! At the beginning of May, I suddenly lost all feeling and ability to move in my left leg and my foot was blue and cold. I was taken to the E.R. and admitted to the hospital. After having brain, spine, and hip MRIs, and being examined by orthopedic specialists and a neurologist, I was sent home. I was told that this was something called Conversion Disorder, which can happen after a trauma, such as surgery. It took about three weeks for my leg to fully wake up, but I am doing very well now!! I am actually running a little bit and I don’t have too much pain! My surgeon and my physical therapist are very happy with how I am healing and everyone is very confident that I now have a healthy hip!

I truly wouldn’t trade this experience for the world. I have learned so much about myself and about other people. I have become stronger than I thought I could be. I have also figured out that I want my future career to be involved in medicine so that I can help other people through their experiences. Though this journey hasn’t been easy, I truly would not be who I am without it. I am also BEYOND THANKFUL for the doctors, nurses, and my physical therapists that have taken care of me throughout all of this. They are truly the best!

My message to anyone that is struggling with hip issues and has received a diagnosis or has not yet received a diagnosis is PLEASE do not give up!! I know how difficult it is to not know what is wrong with you and to feel like you won’t find a way to feel better. I know that these hip issues can cause so much stress. And I know how badly we all want to just be able to do what we want without worrying! Don’t give up.

And to the people who have had hip surgery, you are so strong. It is not easy. Now it’s our turn to help those who are experiencing this after us.





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May 6, 2020 Gina Jay

Gina Jay

Gina Jay is an author, advocate, mother, wife, and creator of the fundraising/community organization, One Hip World. Gina’s entrance into the world of hip dysplasia...

Gina Jay is an author, advocate, mother, wife, and creator of the fundraising/community organization, One Hip World. Gina’s entrance into the world of hip dysplasia was a rough one. Her daughter, Mia had a severe case of hip dysplasia and they endured much hardship. But through it all Gina became an outstanding advocate, a voice for those affected by hip dysplasia.

Here is Gina’s Story:

Before hip dysplasia (and still, to this day), our lives were incredibly beautiful, and incredibly challenging!  Our daughter, Mia is our ‘miracle’ in many ways.  My husband Michael and I were told that we could not have children.  For the first 16 years of our marriage, we lived our lives believing that God had simply said, ‘no’.  While it was hard, we did our best to persevere in faith, and trust His plan for us.  Then, just before I turned 40, after having lost a good bit of weight, God said, “Okay, now.”  And, gave us our girl!

Our challenges began right away, since Mia was always a very fussy child.  At birth, and for the first full year of her life, she had pretty severe torticollis.  We were thrown into the world of pain medicines and we were shown the correct ways to massage her to try to help her neck muscles ‘straighten up’….still, she suffered.  Around 8 months of age, while her torticollis was still going strong, she began vocalizing two important words, “legs, ouch”.  Every day I would call her pediatrician’s office saying something was wrong, every night, Mia and I would pace the floor for hours at a time while she agonized.  I would take her into the doctor’s office weekly telling them that “something was wrong”.  I was told, “it’s growing pains, and it’ll pass”.  At one year of age, just as they were beginning to talk about surgery to correct her torticollis, her neck suddenly straightened. (Thank you, God!) She didn’t need surgery for that!

My husband and I noticed that she seemed to not want to be ‘mobile’.  She wouldn’t use her legs much at all!  Again, many, many calls to the doctors, and we were told that “children tend to focus on one area at a time, and since Mia’s vocal skills were so good, that clearly she is focused on those, more than crawling, walking, etc.”  I could not make them understand that she wasn’t displaying a lack of interest in being mobile, but that something seemed to be stopping her….physically.  Finally, at 13 months old, she began to crawl.  It was a very awkward movement, and I knew right away that it was ‘different’.  More phone calls and doctors’ visits ensued.  “She’s fine, you worry too much.”

In the meantime, our nights were filled with screams of agony and pacing the floor for hours on end trying to comfort her.  It was exhausting, not just physically from the lack of sleep, but mentally and spiritually as well.  I can’t think of anything worse than watching your child suffer so tremendously, and feeling helpless to help her.  One thing we as parents know is that when they suffer, we do too.  Mia finally took her first steps at 17 months with assistance, and walked unassisted at 21 months old.  When Mia finally walked, her steps were very ‘deliberate’, and very awkward.  She would ‘swing’ her left leg forward in order to move it out in front of her; there was no “natural, flowing” movement as in a normal walk.  When she stood, her back was arched, a lot.  There was a distinct curvature to her back…we now know this is called ‘swayback’.

Five pediatricians (one of whom was the Head of Pediatrics for a rather large insurance group) saw Mia throughout this process of phone calls and visits.  At 28 months of age, when I finally took her to the ER and sort of flipped out on them…lol…..they finally did an x-ray, and we had our diagnosis.

To know that despite our best efforts, that our daughter’s dysplasia was missed is, yes, heart wrenching.  As a parent, you immediately internalize it and blame yourself.  “I should have tried harder….I should have yelled louder.”  Know now, that you cannot be held accountable for that which you did not know.  Beating yourself up will only deter you from your current mission….and, there is a fight at hand.  However, knowing now what we didn’t know then, we can see and understand how it was missed.

There are two main contributing factors as to why this was not discovered. First, Mia’s dysplasia was so severe, that she actually appeared “A symmetrical” (equal) on both sides.  This was only because both of her hips were equally ‘messed up’.  The second reason boils all the way down to lack of research and awareness.  Had there been more research over the past 60 years, we would know so much more now!!!! And, because hip dysplasia has not been focused on for so long, the pediatricians who are so VERY important to all parents (let’s face it, our pediatricians are our first line of defense against EVERYTHING!), are completely unsure of what to look for.  We need them to know!

It was Children’s at Egleston Pediatric Hospital emergency department who referred us to Pediatric Orthopedics of Atlanta.  After a couple of months and several consultations, we received what was one of the greatest blessings in our hip journey.  Enter, Dr. John Heflin.  He was just starting with this practice, and he was nothing short of a gift straight from God.  Being so confused and disheartened and anxious, this man entered our lives with love, compassion, wisdom and expertise.  I shudder to even think of how our journey would have been without him.  Having a surgeon who ‘hears you’…listens, responds, comforts, teaches and walks with you is so very, very important.  If you are an hd parent, search out a doctor you can relate to and feel comfortable with…if you are a doctor, please remember how critical you, your expertise and your compassion are to us, and know that you are loved and appreciated.

Mia’s treatments for her hip dysplasia began two months after her diagnosis.  In August of 2011 she underwent her first surgery, an ‘open reduction, Pemberton osteotomy with femoral shortening.’  She wore her first spica for approx. 6 weeks, when we had to take her back into surgery to address both a reaction to the liner of her cast, as well as a pressure point ulcer which was forming on her spine.  Her cast needed to be changed, and so in we went, and she wore the second cast for another 6 weeks or so.  After approximately a month of being out of spica, we taught Mia to crawl, stand, walk and potty train a second time.  Just when she was mastering these tasks again, surgery time was once again upon us.

In March 2012, we went in for her third surgery.  Same procedure but now it was time to correct her left side. This surgery brought with it some extra, extremely overwhelming challenges.  This was the surgery left our daughter paralyzed and we almost lost her completely.  I hesitated to include these details, because I didn’t want to frighten anyone.  Please, PLEASE know that each child is different.  Your child’s hip dysplasia may or may not be as severe as our Mia’s, and you may or may not face similar challenges.

Mia’s severity is somewhat uncommon.  I decided to include these details for one reason, a friend, and someone I admire very much, Adrian, the Director of Larry the Cable Guy’s Git-R-Done Foundation, said this to me once, “you have to tell them, Gina….knowledge is power.  Even when it’s scary knowledge, its still power.”  And, he was so right!  You can’t fight an enemy you don’t know.  Hip Dysplasia is an enemy that almost seems to metamorphasize….changing as it goes.  It has a way of throwing curve balls and delivering setbacks.

One of the biggest frustrations in the battle of hip dysplasia, is the “wait and see”….there is a LOT of this!  “Wait to see what the body does to heal itself…. wait to see if the ‘angles’ get better, wait to see if it will “correct itself” with the brace and so on.

During her second surgery, Dr. Heflin was faced with a very upsetting decision.  Because Mia’s left femur had drifted up more, and was now in her rib cage, and because he had exhausted all chances to pull her leg down far enough to get it into the new hip socket, he had to either leave it out permanently, knowing the pain and quality of life she would have, OR “take out her left leg”.  To do this, he had to cut ‘everything’….muscles, ligaments, tendons, all of it. He chose to ‘take out her left leg’….intentionally paralyzing her temporarily, so that he could get the leg in, and knowing that in time the nerves would come back.  He truly believed in his decision.  We truly believe that God was guiding him in his decisions and his surgical expertise.  Dr. Heflin made a difficult decision, but one with Mia’s best interest at heart, and one that we are grateful for.  Who knows what would’ve happened had he chosen the other option.  He braced us for years of potential paralysis.  All of ‘Team Mia’ sprang into prayer action….and, we know they were heard. On the morning of day 6, she moved her big toe, paralysis gone.

On day two, post-surgery is when we almost lost her.  Though she had not lost much blood in this surgery, suddenly, her vitals began to spiral, and before I knew it, doctors and nurses were running about.  She required an immediate transfusion to save her, and I’ve never prayed before the way I did during those few moments.  “I don’t care if she can’t walk (paralysis didn’t leave until the 6th day), just leave her with me.”  It was during this time that I thought of everyone who fights…. everyone who hurts, every frightened child and parent.  I vowed, “no more.”  Never again would a Mommy or Daddy stand beside their child’s hospital bed crying like that, frightened like that, helpless like that.  No more.

A month or two after Mia’s diagnosis I was desperate understand her disease but was unable to find anything on the web not related to dogs. I did, eventually find, the International Hip Dysplasia Institute.  Through the initial call I met and immediately loved Susan Pappas & Dr. Charles Price.  I asked, quite simply, “What can we do to help.”  Dr. Price explained the mission and vision of the IHDI, and the overwhelming need for more research and awareness. Research costs money, it’s a fact of life.  That is why in 2011 I decided to start One Hip World.

I believe God wanted One Hip World to accomplish several things.  1) It would bring the hip dysplasia community together so that those who fight didn’t feel so alone.  2)  It would raise awareness.  3)  It would encourage those who fight by empowering them with a way to fight back!  One Hip World encourages everyone to ‘fight back’!  We do that through fundraising.  Bake sales, car washes, 5K’s, you name it and THEY have organized them and made it happen!  In less than 2 years One Hip World has raised over $41,000 for further research and awareness.  Each and every member, of which there are thousands, choosing to step up and help themselves and others!  Taking back control of their lives, and helping to uncover the mysteries that are hip dysplasia.  The more light you shine on something, the less frightening and intimidating it becomes.  Once you can see it for what it is, you can find a way to counter attack.   It is such a privilege to share the “battlefield” that is hip dysplasia with such an incredible group of people.

It was also rather early on after the diagnosis, that my best “hip” friend and now “sister of the heart”, Julie Beattie came into our lives.  Julie and I firmly believe that God put us together.  From our first “chat” we became immediate friends and felt connected.  Julie’s daughter, Abbey is an hd fighter as well.  Julie and I were frustrated by the lack of resources available to assist in explain to our daughters what was happening to them. We found other ‘character’ books to read our girls, “___ goes to the hospital”, sorts of things.  Again, God spoke up and said, ‘write a book’.  Knowing absolutely NOTHING about writing a book and being very quick to want to say ‘no’, God gave me a title, and a bunch of words, and I started writing them all down.  I called Julie, she immediately jumped in with “elaborate on this….leave this out” and together, we worked until we had what we feel God had commissioned, “Hope the Hip Hippo”.  She gets her name from Jeremiah 29:11, for He does indeed know.  Hope’s job, is to give the children a friend, someone they can relate to, and to give the parents a way to share what’s happening in a less frightening way.

Today, we are continuing in our personal fight.  We are still experiencing some ongoing pain and muscle weakness which may or may not be attributed to Mia’s hips, but we are continuing to search for answers.  In June, we will meet our new surgeon who has some very big shoes to fill, since our dear Dr. Heflin and his family moved back home.  We have been blessed with AMAZING people who have loved and support us the way. Each and every one of them played a different role and brought with them unique gifts, without them we’d have been in very big trouble!  We are also so very VERY grateful to Dan & Cara Whitney for the work they do with IHDI. Had they not done what they did then it would not be here for us now and if we do not do our part, it will not be there for those who come after us!  The gratitude we feel towards Dr. Price and so many others who work so hard for the answers we need is inexplicable. Yet we are humbled by their love and determination to use the gifts and ‘calling’ that God gave them to help and to fight for all of us!

As far as our continued plans for raising awareness, that one is simple.  Whatever it takes!  Speaking, writing, whatever we can do!  No child, teenager or adult should ever experience the pain, anxiety and fear I have watched Mia endure, and if I can help it…. no more will, God willing!!

Continue to fight the good fight, know that you are never alone, and as we say at One Hip World, “Together we CAN, Together we WILL!”





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May 6, 2020 Sam Bowen

Sam Bowen

Here is the story of one mums fight against the social stigmatism associated with a child in a cast.  She overcame the obstacles place before her by...

Here is the story of one mums fight against the social stigmatism associated with a child in a cast.  She overcame the obstacles place before her by hip dysplasia and build a company to help parents of newly diagnosed children.  Follow along as she tells you how it all happened;

Hi my name is Sam Bowen and I am the Director of Hip-Pose Ltd (click the link to see the wide range of products offered by Hip-Pose) a clothing range for babies and toddlers being treated for hip dysplasia. My ‘story’ is going to sound familiar to many parents of children with this condition, but also has a big difference which lead to me setting up the company.

My daughter Lucy was born at term but was very small and extended breach. When you see your newborn for the first time and their left leg is bent behind their head like a yogic master you kind of expect there will be consequences! Despite checking however her hip dysplasia was not detected.

Because of her small size, Lucy spent two weeks in a special care baby unit and various tests were done, one of which being a genetic test. These first weeks were taken up with learning the enormous task of how to be a parent and wishing there was a ‘rule’ book written about it.

At six weeks we took Lucy for a routine hip check and were upset, but perhaps not surprised, to discover that her left hip was dislocated. She weighed just over 6lbs at the time and had to be fitted with the smallest Pavlik harness they could find. I remember feeling numb and very protective of my tiny baby as this alien and constricting harness was put on her. The timing of the DDH diagnosis could not have been worse as just a few days before, we had learned that Lucy has a unique genetic fault on two of her chromosomes. Because it was unique, there was no evidence to what the future would hold apart from it being bleak in terms of her health and development.

The nurses who treated Lucy were very kind and helped me to focus on the DDH as something that was treatable and could be fixed. It was summer, so although it pained me to have to cut up all her lovely new clothes to fit over the harness, at least she would not be cold. I was instantly hit however, like a truck in the face, when complete strangers would look at my daughter and gasp or make senseless comments. Luckily Lucy took to wearing a harness with ease, although it did make the Colic a little more difficult as she couldn’t lie on her front.

After six weeks of treatment the harness came off, the left hip had realigned and all looked normal, so it was devastating that at the six month check up it was discovered that it had come out again. This time we were talking about surgery and she was still very little. A new team of people swept into our lives, to join the by now growing team of pediatricians and therapists helping with Lucy’s medical and developmental needs.

I still feel genuinely lucky that the team treating Lucy’s hip dysplasia were so fantastic. They treated me like an equal and wanted my opinions, they were humorous and yet extremely professional and most of all they doted over Lucy. It was decided that due to Lucy’s slow growth, we would wait until she was a year old to do the surgery. As the date drew closer, I started to panic about coping when Lucy was in a Hip-Spica cast. The difficult nappy changes, how to carry her, whether she would sleep, how we could get her into a car seat/pushchair/high chair. The list of complications to our already complex life seemed endless. I was signposted to a charity called STEPS who provide advice to parents on DDH and lower limb conditions. We bought a Britax two way elite car seat with special hip-spica adaptations, our Occupational Therapist obtained a hip-spica chair on loan and luckily the lovely pink pushchair I’d treated myself and Lucy to was an ok shape to take her in a cast.

The day of surgery arrived, and we anxiously waited in a room with another couple whose daughter was due the same procedure. The mum and I quickly made friends and to this day are very close as it turns out her daughter also had a rare chromosome condition and our girls are now best buddies in the same class at school. Having a friend going through the same DDH journey proved to be really helpful. Today there are many social media sites with groups dedicated to DDH and the mutual support parents give to each other is heart warming and much needed.

I will never forget that first operation, as I soothed Lucy whilst she was anesthetised for the first time. Nothing prepares you for it, you just have to have faith and a lot of trust that the Dr’s know what they are doing. Overwhelmed with adrenaline, I spluttered out “Promise me she won’t die” shortly followed by “Promise me you’ll use the purple cast” luckily I said these in the right order! As crazy as it sounds, having a coloured cast seemed the only way to me to avoid the horrible comments I’d heard other mums face.  One local mum had told me that on her first day out with her daughter in cast, she had been approached by a stranger who’d asked if she had dropped her child down the stairs! Now I know a full hip-spica cast can look a bit alarming, but really I was speechless when I heard this, and very angry.

It was now approaching winter with frequent rain (like gremlins the cast must not get wet we were warned!) so I designed and made a pair of waterproof trousers to fit over Lucy’ cast. We still had many other medical and therapy appointments to get to plus I refused to keep her shut indoors for the three months of treatment. At one of her hip checkups, the nurse and Surgeon both remarked on her trousers saying they had never seen anything like it before and how wonderful they were. I also noticed that when the trousers were on no one took a second glance at us; it was as if the cast was invisible. Encouraged, I made the trousers in a range of fabrics and actually had fun dressing my ‘hip kid’ as the months passed. They also came in useful after the cast was finally removed as Lucy’s legs used to being held apart, stayed in that position for a couple of weeks. The hip-spica trousers allowed for her stretched ligaments to contract in their own time and not be forced into regular clothes.

At about this time, it had become clear that I would not be able to return to work as Lucy needed specialist care and her small army of therapists produced a gruelling schedule for us. I can’t say that giving up my career in Museums was easy, I mourned for it for a long while. However the surgeon and physiotherapist continued to say I had a great idea with the clothing. So I went back to the drawing board and created a specially designed sleep suit and a romper to be worn over Pavilk harness. The hospital staff provided me with willing parents happy to trial the designs and I gave them a sleepsuit as thanks. I got their feedback and comments and one lady very kindly agreed to her daughter being the ‘model’ for Hip-Pose.

The creation of Hip-Pose (a name my Mum came up with!) was a whirlwind journey. I got a business mentor, registered as a Ltd company, won a £2,000 start up grant, sourced a manufacturer in the UK, designed my own website, got a logo, taught myself pattern making and finally went ‘live’ online all within a year of making that first pair of trousers for Lucy. If asked again, I really don’t know where I got the energy from to stay up late night after night and spending the few spare hours when Lucy was in nursery on the business. Looking back I realise now that that was my therapy, my way of pushing through the pain and grief of having a child with profound special needs. Everyone deals with the news differently and it felt imperative to me to create something positive out of a difficult situation. I had felt firsthand what it is like to feel embarrassed about your child’s treatment aid and be wary of going into social situations only to be challenged by another rude comment. I felt and still do feel passionately about helping parents to go about their everyday life as normally as possible at a difficult time. Dressing your child should be a fun activity and providing a practical solution to the problem was my main aim. I regularly get emails from parents saying what a difference my designs have made, one even called them a ‘life saver! It is a very niche market, but an important one, I have customers all over the world and work with hospitals that give a sleepsuit at diagnosis stage to help soften the blow of the news as well as educate parents on how to dress their children during treatment.

I hope to eventually reach out to every DDH parent and tell them about Hip-Pose, how to survive this difficult time and come out of it a little less battle worn!

Best wishes

Sam Bowen 

Director, Hip-Pose Ltd 





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May 6, 2020 Cherisse

Cherisse

Poppy Love’s Hip Journey My daughter, Poppy Love Wilcox, was born July 29, 2012. Poppy is my first born and is an IVF miracle baby....

Poppy Love’s Hip Journey

My daughter, Poppy Love Wilcox, was born July 29, 2012. Poppy is my first born and is an IVF miracle baby. Having her at 41 years old, she is truly my life-long dream come true. The greatest day of my life was giving birth, holding her and gazing into her eyes. Her middle name “Love” divinely came to me minutes after she was born…

When Poppy started walking, we all noticed something was “off” with the way she walked. She started catering to her right side and just seemed to “waddle” more than she should. We mentioned this to her pediatrician at her 15 month visit; thinking maybe one of her legs was longer than the other. He measured her legs, looked at her closely, shook her legs out and told us she was “just fine”. We noticed that as time progressed, her condition wasn’t improving and she was beginning to stand on her right leg, lifting her left. I also noticed an indent forming on her left buttock.

In retrospect, down deep in my gut I knew something was wrong with Poppy. I definitely pushed those terrifying feelings away from my heart, staying safely in denial; blindly trusting my doctor. The possibility that something might really be wrong with my daughter was my deepest fear in life. I just did not believe it could be possible. At 28 months, I finally took matters into my own hands (with the push of my mother’s guiding intuition and encouragement), and got an x-ray at a local orthopedic clinic. This made it very clear it was her left hip and not her legs at all! Her left hip was severely dislocated. I was in shock!
November 24, 2014, Poppy was diagnosed with Developmental Dysplasia of the Hip (DDH) at Children’s Hospital in Denver. This is a condition in which there is abnormal development of the hip joint. In Poppy’s case, she has a severe case where her femoral head is completely dislocated from the bone of her very shallow hip socket. It was most likely there from birth, but never diagnosed by either of her three pediatricians. So, it may have developed after birth, but we will never know for sure…

This is why AWARENESS and trusting your intuition are both vitally important. If I was educated about hip dysplasia, I would have gone about things differently. I would have been aware of hip healthy swaddling and safe baby carriers. I would have most likely pushed my doctors to give Poppy an x-ray and gone for 2nd, 3rd opinions. If I would have been brave enough to trust my gut, that inner voice that knew something wasn’t right, I would have acted sooner…
January 20, 2015 was Poppy’s surgery at Children’s Hospital in Denver, CO. (Before surgery I did everything I could to prepare Poppy. I bought her a “doctor’s kit” and read to her “Hope the Hip Hippo” twice a day). I held my precious baby girl as my husband and I rolled into the operating room. The feisty girl she is fought and swung her arms at the gas mask (even after she was given a narcotic to “relax” her) until we witnessed her go deeply under. I gasped and my eyes welled up as I witnessed her tiny body lay still on that large, cold, intimidating operating table. I was scared to death. I was forced to face my deepest fear head on and deal with whatever outcome would come to be…

She had an open reduction to position the ball into the socket. Her femur bone was shortened to aid in the process. Before the surgery, our doctor thought he would have to perform a pelvic osteotomy because her x-ray showed an extremely shallow hip socket. This luckily didn’t have to happen because her femoral head (ball) fit back into the hip socket naturally without popping out. This was even a surprise to our doctor; it was a Miracle! Her surgery was a huge success and I felt deeply blessed. My angels were listening and all the prayers from family and friends paid off in spades!

When she woke up and I held her in my arms, I soon realized this was the second greatest day of my life (next to her birth). I was overwhelmed with love, gratitude and relief beyond anything I can express…

This surgery has given Poppy the best chance to have “HEALTHY HIPS 4 LIFE”! The plate in her leg will come out in two years (when she’s four years old) and we will know if another surgery will be necessary at that point. Our doctor says there is a 30% chance…

Poppy’s Facebook page is a blog for me to share our journey and provide awareness, support and inspiration to the world. When I first found out about Poppy’s hip dysplasia I was devastated and just wanted to cry all day, and keep this devastating news to myself. I experienced every heart wrenching emotion: sadness, shame, why my daughter, anger, regret, guilt, and on and on. I eventually came full circle with my feelings and realized I needed to embrace the reality of Poppy’s situation and be brave for her. I needed to be the courageous mother she needs to embrace, heal and overcome her situation whatever her long term outcome would be. Finally, I needed to live by my life-long belief that “everything happens for a reason”. It’s incredibly difficult to embrace this spiritual truth when it’s the health of your child. I was being tested…

One morning, loud and clear, my heart spoke to me that I needed to share Poppy’s journey with the world! This was one of the many “reasons” emerging from her hip dysplasia. I knew the love and support I would gain from Poppy’s blog would help give me the strength to be the positive force she needs. I also knew that if we could help even one family prevent hip dysplasia through Poppy’s story, it would be a blessing for us all!

February 20, 2015…. We are one month into our journey and living with a Spica Cast. The outpouring of love and support has been incredible and our family is deeply grateful. We are humbled and uplifted by the positive energy surrounding Poppy. Poppy’s first x-ray looked perfect and she is on her way to a healthy recovery. Her courage and resiliency blow me away! Our story has already been able to help and inspire other families going through similar situations. No one overcome’s life’s challenges alone, and we are doing are little part to help others and spread the LOVE!

We welcome you to join us on “Poppy Love’s Hip Journey” as it courageously unfolds. Here is a recent post from Poppy’s Facebook blog:

February 17, 2015: “I’m not spending my days chasing Poppy non-stop around the house, watching her get into everything possible. With her being forced to stop and be still, it’s forcing me to stop and be still. I’m spending more quality time in the moment with my daughter. I’m learning to be 100% present! Laughter, music, singing, art, painting, blocks, puzzles, games and conversation fill our days now. I’m watching her over-compensate mentally and she is developing new skills rapidly; especially her ability to speak in full, clear sentences! She didn’t sing very much before surgery, and now she sings all day! She didn’t used to spend more than a few minutes coloring and painting, but now she enjoys art for hours out of the day! It’s remarkable to watch her grow and progress in new ways because she has to…This is another remarkable “silver lining” in “Poppy Love’s Hip Journey”! If we let ourselves, we will learn, grow and evolve from the challenges life gives us!

We wish you and your child the very best on your hip journey!





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May 6, 2020 Sarah Twomey

Sarah Twomey

arah Twomey is a mother, occupational therapist and a hip dysplasia advocate. Her two daughters both have hip dysplasia. Eve’s was evident from birth, Maya’s didn’t...

arah Twomey is a mother, occupational therapist and a hip dysplasia advocate. Her two daughters both have hip dysplasia. Eve’s was evident from birth, Maya’s didn’t develop until six months of age. Their first years of life have involved the use of a brace to help correct their tiny hips.

This experience with her daughters forever changed her life and helped shaped her path.

Follow along as Sarah takes you down that path.

As I got the best cuddle tonight from my youngest, Maya, I was overwhelmed with love and admiration for all of her recent developments: pointing, getting on her trike by herself and, best of all, giving me hugs. Fourteen months is such a beautiful age — I remember wanting to press pause on time with our eldest Eve at this age too. I think tonight I was stopping to smell the roses, so to speak, as tomorrow we go back to the orthopaedic surgeon for Maya’s next check-up.

Eve and Maya both have hip dysplasia. We’ve been on the journey towards healthy hips for our girls for almost three years now. Our journey has not been as challenging as some, but not as fast as others; it is our journey and no two are the same.

Eve was breech, and when she was three weeks old, we were told a short stint in a Pavlik harness would correct her shallow hip sockets and we could put it all behind us. Eve got the green light to stop nighttime bracing just before her second birthday. Eve wore a harness then brace 23/7 for 10 of her first 12 months of life. Her next check-up in November will be one year after treatment finished. We are confident she has avoided surgery, but have learnt to keep an open mind.



Maya kept her head down during pregnancy and we thought she would therefore avoid any trouble with hip dysplasia. Her 6- and 10-week ultrasounds were promising, but by six months she needed to go into a brace. Maya only needed four months of 23/7 bracing and, for the past four months since then, has been using a brace during nights and naps. We wait with bated breath for the outcome of her check-up tomorrow.

Back in February, I found my niche: combining my determination to be the best mother I can be while not losing the career I loved as an occupational therapist. I saw a need for increasing support, education and resources in Australia to benefit all people impacted by hip dysplasia, along with the community-based health professionals working with them. To work towards meeting this need, I established the not-for-profit organisation Healthy Hips Australia.



Occupational therapists approach the hurdles thrown at people in life, using a holistic approach to minimise the impact of those challenges on a person’s independence and engagement in activities.

Treatment for hip dysplasia, across the age span, has the potential to impact significantly on all areas of a person’s life. Things we take for granted — such as showering, bathing, personal hygiene, toileting and dressing — are significantly harder, if not impossible, for those affected during treatment. Community access (via car, pram or foot), leisure activities and age-related learning (milestones for babies, schooling for children, work for adults) may be put on hold for some or the duration of treatment.

Taking a holistic approach to hip dysplasia — helping reduce its impact on activities of daily living and better connecting parents to health professionals — will, I believe make working and living with this condition a little easier.



As the world leader in promoting prevention, diagnosis and treatment of hip dysplasia, I was delighted to be asked to join the International Advisory Board for the International Hip Dysplasia Institute (IHDI). I believe our approaches are complementary in working towards the same goal and I look forward to contributing regular content to the IHDI website. Click here to view my bio.





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May 6, 2020 Natalie Trice

Natalie Trice

Natalie Trice is a mother, wife, author, blogger and writer and lives in the UK. She has two sons, and her second, Lucas, was diagnosed...

Natalie Trice is a mother, wife, author, blogger and writer and lives in the UK. She has two sons, and her second, Lucas, was diagnosed with DDH when he nearly five months old.

Ever since, Natalie has worked tirelessly to raise awareness of the condition that affects so many children and adults around the world. As well as writing about it on her blog and in the media, in 2015 Natalie’s first book, Cast Life – A Parent’s Guide to DDH, was published and is now selling globally. Natalie also launched DDH UK which focuses on raising awareness and offering information for people effected by hip dysplasia.

Here is Natalie’s Story

I know only too well that whilst DDH is not life threatening, it really is life changing. The earlier it is spotted the less likely a child will suffer a lifetime of pain, disability and hip replacements.  However, all too often cases are missed and children are diagnosed later than we would like.

My son was diagnosed with DDH just before he was five months old and we went from a life of coffee mornings and baby yoga to endless appointments, scans and operations.  I wanted know as much about the condition as possible so I understood the treatments being offered and could see a way forward.

My initial search threw up horrific images and worst-case scenarios that simply compounded my fears. I felt totally out of my depth and alone.

Lucas had his first operation, a closed reduction, when he was just eight months old. His condition was too severe, and detected too late, for the pavlik harness to work so this was the next logical step.

For Lucas, this procedure and the cast and harnesses that followed, didn’t work and he went on to have an open reduction and femoral osteotomy when he was two. Post-op he was placed in a broomstick cast for months and despite this being a challenge, it was worth it when we went for the check ups and things were looking great. His hardware was removed the following year and everything was looking really positive.

One thing I have learnt is that DHH sometimes comes back and bites you and this happened to my darling boy.

He was doing well at school, running around with his friends and was always playing football, but then in June 2015 we were told things weren’t looking good once again.

My husband and I were totally floored. Lucas was six and we just didn’t see this coming, why would we? This time he needed a pelvic osteotomy, his fourth and largest operation to date.

Ironically two days before he was wheeled into theatre we had the launch party for my book, Cast Life – A Parent’s Guide to DDH’,

Cast Life was inspired by my son and is the book I wish I could have read during those lonely, uncertain early days at the start of our journey. It includes everything from clear explanations about the condition and the treatments involved to the products available to make life easier for children in casts. It also looks at family life, dealing with emotions as well including first person stories and parent comments. Over time I cobbled together information as we went along but didn’t ever find one solid resource that offered me comfort and solace.

Professor N. M. P. Clarke ChM, DM, FRCS Consultant Orthopaedic Surgeon, who wrote the foreword for Cast Life, commented, ““DDH is one of the most common congenital abnormalities and it is remarkable that there is so little information out there. This book is essential reading for the parents of children with the condition, as well as health professionals working with them, and I would love to see it in all clinics around the world.”

I’m not a medical professional, although many did contribute to this book, but a mother who hopes her experiences and the determination of her son and strength of her family will help empower others and offer them a little solace.

Lucas’ journey isn’t over and I have accepted that DDH is now a part of our family and our life. I am looking forward to working with the IHDI and other DDH organizations around the world to ensure there is more awareness of this life changing condition and the parents have the support the need for their journey.

Cast Life is available on Amazon and 10% of the book royalties will be going to this cause. I have also set up a charity called DDH UK offering information about DDH.





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May 6, 2020 Sips for Hips

Sips for Hips

Many of our readers know, getting a diagnosis of hip dysplasia is a scare thing. Typically, they don’t know anything about hip dysplasia and the...

Many of our readers know, getting a diagnosis of hip dysplasia is a scare thing. Typically, they don’t know anything about hip dysplasia and the unfortunate hardship it brings. On top of everything, they tend to feel very alone and don’t know where to turn.

When Kendra’s daughter was diagnosed with hip dysplasia she reached out to IHDI for help. We answered her questions and connected her with the hip dysplasia community for support. Kendra and her family have gone through countless hardships since that original diagnosis but she has never lost faith. In fact, Kendra took it upon herself to do what she could to help battle hip dysplasia.

Here is the interview we conducted with Kendra via email.

We hope you enjoy it as much as we did.

-Team IHDI

1)Tell us a little bit about yourself.

As I sit here writing this (with my IHDI pen and the bracelet that I haven’t taken off in almost 4 years) I will attempt to tell you a little about myself and our fight against this monster that we call DDH.
My name is Kendra Munoz, age 43, mommy of our beautiful daughter Peyton who is five and her older sibling Sophie age 6 and her younger brother Hobie age 2. Oh, did I forget to mention that her siblings are the cutest lil boxer pups around. I am also blessed to be a wife to my husband Steve for almost 20 years. We live, along with all of my family, in Oroville CA. We are about 1 ½ hours north of our state’s capital: Sacramento. This is a place where we love to fish in our lakes and rivers and go skiing in our mountains. But if you ask anyone, the most enjoyed events we have around here are the backyard BBQ’s with great friends, amazing food and some fantastic wine to go along with it. Why am I telling you about the great food and wine, well that is to be explained a little later.

2) What is your experience or connection with hip dysplasia.

Peyton was diagnosed with hip dysplasia at six months at a well-baby check. She was immediately sent to Shriner’s and was put into a Pavlic Harness for a month. She was then immediately switched to a Rhino Brace until 13 months. After which we enjoyed about a year of normalcy thinking that her hip would correct itself. At 2 ½ years she had her first pelvic osteotomy which failed so two weeks later she had another. She had her hardware removed three months later and we thought all was well until last August, at four years old, when the doctor informed us that it looked like there may be more surgeries to come.
When we started this journey I felt scared and alone. I did not know there was anywhere to turn. I had just heard of this diagnosis and how could there be anyone out there who knew what we were going through. I then found the IHDI! When I called Susan she was like the savior I had been looking for. She assured me that we were definitely not alone in this battle. She not only knew what Peyton was going through, but what we were going through as parents. The IHDI not only gave us professional advice and support, but also put us in contact with other families who were going through the same battles as we were. There was this huge family out there that we had not known existed, until contacting the IHDI.

3) Please tell us why you decided to get involved with the IHDI?

As word spread of Peyton’s’ hip dysplasia, the questions and statements started flying. Not only did people not know anything about hip dysplasia, the statements they did make were very upsetting to me.
“I thought that was just in dogs?”
“You mean like German Shepherds”
And my favorite “Kids don’t have that, its only in dogs!”
No one in this community knew anything about children with hip dysplasia, but everyone I had spoken to were very interested and responsive. People weren’t going to learn about this condition unless I did something to teach them about it. I knew that a fundraiser was the answer and the IHDI was the organization I wanted to fundraise for. The IHDI was there for us at every turn, it was now my turn to do something for the IHDI. I had to raise money for the organization that not only helped us in our great time of need, but countless others.

4) So how did you come up with the idea for Sips for Hips and what exactly is it.

I wanted to do a fundraiser that would appeal to a broader crowd, something that could be big. This is where the previous comment about loving amazing food and fantastic wine comes into play. The theme was the easy part, a wine and food pairing event. We needed a name that would grab people’s attention, so after much thought and many possible names, Sips for Hips was born. Now for the particulars. We went to a local winery and talked with them. They gave us the use of the winery free of cost for the event and a very generous discount on the wine to be used. I also talked to several caterers and found one that would donate their time and prepare the food at their cost. We had a local band perform that donated their time as well. The last thing that brought the entire event together was getting raffle and silent auction items from many of the local businesses in town, as well as some very special people who wanted to support our cause. We ended up with over 100 raffle items! Tickets went for $1 a piece or 15 for $10. We also had 15 silent auction items that alone brought in over $1000!
I put flyers up all over town as well as talked to every local business I could get to. I also had tickets available for advance purchase at a few predetermined places. The cost for a ticket was $40 which included a keepsake wine glass with our logo, a tasting of four wines paired with appetizers, an amazing desert and ten raffle tickets. The additional raffle tickets, along with wine, was available for purchase and the winery gave us a portion of the proceeds from the wine sales for the event as well.
When all was said and done, we had raised over $6700 for the IHDI! This fundraiser was an event that I gave my everything to. It just goes to show that if you’re passionate about something, coupled with hard work, you can achieve anything!

5) What were some of the hurdles or obstacles you came across when creating this event?

The biggest obstacle I encountered was time. I had many people who wanted to help but I wanted to do it all. I was crazy for not taking them up on their offers. The obstacles I thought I would have going into this was wondering if the community would support us with a cause they had never heard of before. That was proven not to be the case at all.

6) What would you tell someone who wants to get involved but doesn’t know how to get started?

Trust in yourself and the passion you have for the IHDI. I am a person that couldn’t talk in front of any crowd until the Sips for Hips event. You would be surprised at how excited your community will be to support you. When you get your idea, start writing things down and start talking to the people you would need to make this event happen. For us it was the winery, caterer, band and the individuals that donated all of our items for the raffle and silent auction. It is a lot of work but so worth it when you are able to talk to so many about hip dysplasia. When you have your idea figured out and dates reserved, etc., it all starts falling into place.

7) Will there be a Sips for Hips 2 and would I change anything from the first version?

Our event was amazing and I feel it was a huge success, but if I do another one it will have to be bigger. Perhaps reaching out beyond our “local” community, a bigger venue with multiple wineries and more food. There is always room to reach out for a few more raffle and silent auction items also. The chances in Sips for Hips 2 becoming a reality is always a possibility. It’s something that is always in the back of my mind.

8) Do you have any advice for someone newly diagnosed (or their parents) with hip dysplasia?

My advice for those newly diagnosed or their parents is to inform yourself. Know your options, get second or even third opinions and ask questions! Some of the knowledge you will receive unfortunately, comes with experience, but the information and support that I have received from the IHDI and the support groups of parents and patients are what gets me through those days that I feel I am going to fall apart. Along with this battle we are fighting for Peyton, I also was just diagnosed with hip dysplasia. Everyone in our hip family was there for me with phone calls or emails from the moment I let them know my diagnosis. Just knowing I have this support system for the both of us means the world to me. We were not given a choice but to fight this war, so I am so thankful that we are not having to do it alone.
9) What else would you like to say to people about hip dysplasia?

Hip dysplasia is so common, yet no one knows about it. This is why we all need to get out there and spread the word. Together we can, together we will.

For additional information about how you can get involved please check out our page: Get Involved





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May 6, 2020 Spica Life

Spica Life

“Tell us a little bit about yourself” We are Kyle and Bridget, and our children are Grayson, age three, and Londyn, age one. We currently...
  1. Tell us a little bit about yourself”

We are Kyle and Bridget, and our children are Grayson, age three, and Londyn, age one. We currently reside near Milwaukee, WI but have lived many places thanks to Kyle’s service in the United States Marine Corps. Kyle is currently serving in the Marine Corps Reserve and working at a manufacturing plant while Bridget, a Registered Nurse, stays home with the kids.

  1. “What was your first experience with hip dysplasia?”

We were unknowingly introduced to hip dysplasia the day our daughter Londyn was born. In her newborn assessment at the hospital, the pediatrician flippantly mentioned that she felt a hip click. However, we had no idea what a hip click meant or that it could indicate something as serious as hip dysplasia. Brushing it off as a common newborn trait that goes away within a few weeks, the pediatrician told us not to worry, but just to make sure we bring it up at our daughter’s next appointment.

  1. “Take us through hip dysplasia journey”

At our daughter’s next few appointments, we weren’t told anything relating to her hips and it was documented that they thought her hip click had gone away. At Londyn’s four-month well child check, we saw a different doctor in the practice. Sure enough, while examining her hips, the new pediatrician felt a significant hip click and sent us straight for an ultrasound and an appointment with an orthopedic surgeon.

We had absolutely no idea what to expect. The only information we were given by the pediatrician who found her hip click was, “It’s not a big deal, she’ll just have to wear this special harness for six weeks and she’ll be fine. But it’s a really big deal because if it’s not treated right away she could need a hip replacement at age two.” We were completely confused, and scared. We went home and tried to do some research before her orthopedic appointment the following week, but given the wide variety of DDH outlooks, it was impossible to research what the future might hold for Londyn specifically.

Thankfully, when we finally arrived at our pediatric orthopedic surgeon’s office, our questions were answered. Yes, Londyn had hip dysplasia. We learned that her left hip was dislocated and her right hip was not measuring at the right angle. We then began our journey battling DDH. First, Londyn was to complete six weeks in a Pavlik harness, beginning immediately. We had arrived to the appointment not knowing what, if anything, was wrong with Londyn and we left with her in a Pavlik harness, which seemed like a medieval torture device to a mama’s heart!

Londyn wrestled with the harness but eventually accepted it, and even began to sleep at night. We made it through the six weeks, and then began slowly weaning her off of it, per our orthopedic surgeon’s instructions. At the time of discontinuation of the harness, we were told “Londyn’s hips have normalized!” The Pavlik harness was successful! Our orthopedic surgeon gave us four weeks to go home and treat Londyn like a normal baby and we’d check her hips in a month to make sure they had stayed on track. We were overjoyed and hoped this was the end of her hip issues.

At the end of our month of freedom, we were devastated to find that Londyn’s follow up X-ray revealed her hips were again dysplastic. The next step was a closed reduction and a minimum of twelve weeks in the spica cast. We cried, we processed, and then we planned and prepared. We found a small, supportive DDH community online which helped us obtain a spica chair and gave some other wonderful product recommendations. We scoured the internet for hope, for answers to what life would feel like and what it would look like with our baby in a spica cast. The few blogs we found were godsends to ease our hearts and minds, but we still felt like there wasn’t a one-stop source for information, specifically on babies in spica casts. This realization would later lead to our decision to create our website, Spica Life.

Bridget decided to record our hip dysplasia journey week by week on her blog, goldenfrenzy.net, to update our long-distance family and friends on Londyn’s progress, and to hopefully encourage other spica parents looking for a hint that life is going to be okay, even if your worst fear has happened and your baby will need surgery and a spica cast.


We made it through Londyn’s first closed reduction on a thousand prayers, and she was handed back to us in a bright pink spica cast. And so began the discoveries of how to care for a baby in a cast of this size. We learned through trial and error over the next 18 weeks! (Unfortunately, at her 12 week arthrogram, our orthopedic surgeon felt she would need another 6 weeks in the cast.) In July 2016, Londyn’s cast was removed, and we were finally able to squeeze her again! The cast seems to have done its job admirably, and Londyn gets stronger every day as she is slowly gaining confidence to use her legs. As we continue through the coming series of follow up visits and X-rays, we will see where our hip dysplasia journey leads.

  1. “Please tell us a about a few highs and lows you’ve experienced along the way”

Highs of our Journey:

– Working with our orthopedic surgeon and Children’s Hospital of Wisconsin. The doctor has been our hero throughout our journey. His calming voice, incredible knowledge, and sensitivity to our needs as parents settled our emotions and fears since the first time we interacted with him. We joke that Londyn developed a crush on him, and he spends time every visit just smiling at her and talking to her, as well as engaging our son in conversation about GI Joes or Superman. He even pulled some strings to get Londyn a purple glitter cast at her second cast change. His dedication to his job and care for our daughter has been fantastic, and we are grateful to have him and his staff to guide us through this journey.

– Getting the cast off at week 18! It was an amazingly new, yet familiar feeling to hold our cast-free baby again. Tears filled both of our eyes as we watched Londyn stare down at her legs, gingerly feeling the dry skin on her thighs before reaching down and grabbing her toes for the first time in 18 weeks.

– Celebrating Londyn’s first birthday. Having a party despite the fact that Londyn was in a cast was so much fun. We took her spica chair to a park and celebrated with our family and friends. Londyn had a blast seeing everyone and being wheeled around in her chair.

Lows of our Journey:

– Complications after Londyn’s first cast change. Londyn experienced complications with her airway, as a result of the anesthesia and full intubation. The anesthesiologist had to come to our recovery room to prescribe additional IV medication achieve a normal airway. This was a very scary time for us.

– Constipation struggles. Throughout our journey, Londyn has had serious constipation issues as a result of being in the cast.

– Finding out the Pavlik Harness did not work. After the good news from her post-pavlik X-ray, we were shocked when Londyn’s next visit showed her hip dysplasia had recurred. We were speechless when the doctor began talking about a spica cast, as we were expecting the visit would bring good news.

  1. How did you come up with the spicalife.com website? What does the site do?

Spica Life began with a desire to make how-to videos for topics like bathing and changing diapers in a spica cast. Eventually we decided to just try making one video, then another, and another. The process of creating the videos and thinking about how to present them online gave us the vision for a site containing not only the videos, but all kinds of other information and connections to other resources out there.

The goal of Spica Life is to provide parents just beginning their spica journey with all the information they need to quickly adjust to life with a spica baby, and connect them with other online communities and resources that could answer any ongoing questions they have.

A long term goal of Spica Life is to create a searchable archive of encouragement and experience from veteran spica parents. We have a standard questionnaire for parents to fill out and share their story/advice. These stories are then featured on our site and social media. We are off to a great start with submissions, but there are thousands of Spica Veterans out there! Anyone who has spica experience and is willing to share it with those looking for advice and encouragement can go to www.spicalife.com/share and fill out our form.

  1. Whats on the horizon for spicalife.com?”

Our vision for Spica Life is that every time a parent is told for the first time their baby will be going in a spica cast, they will also be pointed to Spica Life in that same conversation. Every time a parent preparing for a spica journey goes to Google and types in “spica cast”, our website is at the top of page one for them as a resource. We want to continue evolving Spica Life to make it as effective as possible, and connecting with as many other resources out there as we can to make that happen. We want to use Spica Life as a vehicle to become more involved in this community, and partner with other organizations to take action to raise awareness and eduction about DDH with parents, families, and caregivers.





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May 6, 2020 Emily

Emily

I am a dancer, aerialist, yoga and Pilates instructor and was diagnosed with Hip Dysplasia at age 29 after 10 years of experiencing un-diagnosed pain....

I am a dancer, aerialist, yoga and Pilates instructor and was diagnosed with Hip Dysplasia at age 29 after 10 years of experiencing un-diagnosed pain. It basically shattered my entire career and income stream for a number of years. I underwent a Periacetabular Osteotomy and the extensive recovery process required.

After months of rehab and a cautious but dedicated training regiment, I recovered to almost full potential and was back to performing in under a year. Every story is unique, but I would like to provide some hope for athletes out there who are facing this diagnosis. I wrote a book (Anatomy Riot) that has been helpful to people on the Adult Hip Dysplasia Facebook group and am happy to chat with anyone who feels compelled to reach out. Learn more about me, my book and get contact info at www.movementinspired.com

You are likely on this site for a reason and my heart goes out to you!





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May 6, 2020 Jen Lesea-Ames

Jen Lesea-Ames

Jen Lesea-Ames, Founder, The PAO Project and Editor, “Onward! Navigating Hip Dysplasia, PAO Surgery, and Beyond” A Bay Area, CA native, I moved to Boulder,...

Jen Lesea-Ames, Founder, The PAO Project and Editor, “Onward! Navigating Hip Dysplasia, PAO Surgery, and Beyond”

A Bay Area, CA native, I moved to Boulder, CO, in 1996 to pursue a graduate degree in Kinesiology. I was a certified personal trainer, as well as a running and triathlon coach, for more than 17 years. I had competed in many triathlons and running races. Little did I know that I had hip dysplasia, a congenital disease that I was not diagnosed with until March 2013 at age 39.

After my diagnosis, I saw a rapid decline in my health, and I suffered with severe chronic pain for over a year. My only hope was to consider periacetabular osteotomy (PAO) surgery. 
After meeting with six orthopedic surgeons across two states, I had my first PAO surgery on my left hip on April 8, 2014, and then on my right hip on December 16, 2014, with Dr. Michael J. Bellino at Stanford Hospital and Clinics (Palo Alto, CA).

Here is my most recent X-ray at my two-year post-op appointment, fully healed:

I am now enjoying an active, pain-free life. Below is a picture of me finishing the 2016 Ragnar Trail Relay in Snowmass, CO. I ran 14.5 miles on trail with 3000 feet elevation gain!

When I was first diagnosed with hip dysplasia, I initially thought it was a disease found only in dogs. When my orthopedist told me otherwise, I did an online search of “hip dysplasia” and the top three of five search results were for canine hip dysplasia. It was at that moment I realized the gap in awareness of human (and in particular, adult) hip dysplasia. Tapping into my inner entrepreneur, I knew that by sharing my story and others’ stories, I could help increase awareness of adult hip dysplasia. Hence, The PAO Project (www.thepaoproject.com) was born. Eventually, the anthology “Onward! Navigating Hip Dysplasia, PAO Surgery, and Recovery” was published in December, 2015. It’s available on Amazon here.

Here is picture of me with the book on the summit of Mt. Audubon, elevation 13,229 feet. (July 2016)

My next steps are to create a workbook to help those who are facing PAO surgery and to launch a national PR campaign for “Onward!” and The PAO Project to further increase awareness of hip dysplasia.

If you are interested in getting involved with increasing awareness of hip dysplasia or getting involved directly with IHDI, my advice is to be clear on how you can contribute and don’t be afraid to make phone calls or send emails to ask how you can help.

If you find yourself (or your child) newly diagnosed with hip dysplasia, educate yourself as much as possible through the IDHI website, and join online support groups (there are free Facebook support groups for hip dysplasia and periacetabular osteotomy (PAO)). Get opinions from at least two to three orthopedic surgeons specializing in hip dysplasia/hip preservation. Always be an advocate for your (or loved one’s) health and listen to your instincts!

Onward, warriors!





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May 6, 2020 David Faustina

David Faustina

“In the dandelion field, the winds begin to blow as nature’s puff tosses wishes untold.” The first page in the story, A Butterfly’s Kiss begins...

“In the dandelion field, the winds begin to blow as nature’s puff tosses wishes untold.” The first page in the story, A Butterfly’s Kiss begins in the dandelion field. The choice to begin the story here was intentional and reminiscent of a time in my life where I felt powerful and alive. Can you remember the last time you held a dandelion in your hand? The wishes that started to fill your mind and the anxiety as you quickly had to pick one wish as you filled your chest with air and with one strong exhale the seedlings broke free from the dandelion and floated high into the air. The tiny white fluffs represented all your hopes and dreams of what that wish if granted, would mean to you in your life. It was exhilarating and filled with power because in that moment you could be and do anything that your heart desired. For many, the idea that wishes can come true soon disappears as life moves on. The tiny yet mighty voice gets softer as we grow until one day the voice can no longer be heard.

The image of the wind blowing the fluff into the air is illustrative of the many wishes that now cannot be told because the dandelions are taken hostage by the wind. In life, this seems to be the case all too often, as the winds of change blow our lives into directions we never anticipated and never wanted as a destination. Yet somehow, we all find ourselves in this predicament at one time or another.

A Butterfly’s Kiss is a story about life’s demand for change in our lives yet through it all, each one of us has the strength to come out strong on the other end of this change. A flick or a tail, a flutter of wings and the faith of a girl…even in times of darkness the light is only a kiss away.

I was given a story that demanded to be written and it all happened in a most unexpected and uninvited way, but such is life sometimes. Here is my story and for many, it may be like your story. It was the fall of 2015 and I had just hung the phone up after receiving a call to let me know that a child very special to me had been diagnosed with developmental dysplasia of the hip, commonly referred to as DDH. A simple search on Google will just about throw reasonable minds into an altered state of panic and paranoia. It becomes a cautionary tale if one is brave enough to instead search using the keyword “spica.” Quickly resorting to center my mind I knew therapy was in order and immediately sent my browser to Amazon. Back in a much more familiar place, I started looking for items that might help this child through the upcoming procedure and recovery period. I was shocked that Amazon, like me, had very little information on DDH except for a link to this chair-like contraption, which later proved to be very helpful. For many, I can imagine, news of a loved one or someone very close to you is given news of a health condition, naturally, we want to immediately gather as much information as possible. Unfortunately, unlike the days of the multi-volume encyclopedias, information is no longer secured by gatekeepers who authenticate its credibility. The information superhighway is now littered with self-proclaimed ‘medical doctors” whose only training comes in the form of too many hours spent on WebMD. Yet, intertwined we find credible and wholly reliable sources that provide the substance and information we need to become better informed and more open to being supportive to the loved ones experiencing an unknown condition. The hour was late as I stumbled upon the website for the International Hip Dysplasia Institute. The name alone signaled to me that this was the holy grail of information for DDH. Upon entering this site I immediately knew this was the real deal. I estimate that for the next six hours I clicked through what seemed like every page. If Dr. Price would oblige and confer, I think I could qualify and be known as David Faustina, IMD status after the amount of reading I did that night, and that is not internal medicine, I am a new breed known as internet medical doctor. I hope I never have to draw blood otherwise that is going to be a bad scene.

My experience coming to understand DDH is not one of a patient or even parent. I do not have a child of my own, but consider myself to have many children, including four beautiful nieces and four handsome young nephews, two even look like me, the nephews. I also was once a youth pastor and over the seven years in ministry had hundreds of kids in my care. I’ve sat beside youth who were hearing for the first time that their parents were no longer in love, I have shown up to the Principle’s office to support a youth who was being expelled. I have had to comfort students as they try to understand why they are in the hospital. Ministry was a lot of supporting and comforting students through grief, heartache, rejection and fear. Celebrating, high-fiving, and affirming students through accomplishments, graduations, and achievements. I learned very quickly that kids are resilient and adaptive, but require authenticity and presence and trust is not something they offer freely. I can remember a mentor of mine giving me words I still today remember. She departed this wisdom to me just as I was preparing to relocate to the San Francisco Bay Area to accept the ministry position. I had shared with her that I had been offered a position in ministry for a Lutheran Congregation in Northern California, it was a thriving congregation filled with families. I can remember asking her, how am I going to last in this job? I was a political scientist, not a theologian. I liked to argue policy not live out the golden rule. She stopped me as she spoke, “Obviously God has a bigger reason for your call so your job is not to question but to listen.” Then a final parting line, “and David, never talk to kids like they are kids. They see right through that.”

As I thought of how I could best support this child as her and her family walked through life with DDH I remembered the words of my mentor and remembered the experiences I had in ministry. I did not understand everything, but one thing I knew for certain, God had something bigger in store, and I am convinced now more than ever this to be true. The months following the procedure were difficult and life during the Spica is not something that should be taken lightly, but it appeared at least from my narrow view that a child is far more resilient than we give them credit. It was during the days of the spica that I would jump onto Facetime at least once a week and tell stories and share in laughter with this child. It became a highlight of the week, but not just for us, but also for my little gray cat who would come leaping up onto my lap when he would hear the laughter of the child. Out of these experiences, a story was born.

“Through the long-stemmed forest, a creature too flight, a little gray furball with the butterfly in sight.”

I wanted to do something that would help not only this child but all children and families who experience these circumstances in life. One evening last November I finally sat down and eight hours later I had the first draft completed of A Butterfly’s Kiss. It was raw and incomplete, but it was finally taking shape. My initial intention was to present this story as a gift to this young child. As I continued revising I sought out an illustrator and met a gentleman from Paris, Nicolas Lonprez. I shared with him my intention for the book and shared my personal story and he phoned back a day later and accepted the role of illustrator. He said he was so moved and felt called to work on this project. What little compensation I was able to offer, far below market rate, was acceptable to him because he too wanted to create something that would give children hope. Together we continued to work on the story and illustrations. The result has become a masterpiece where each page is a portrait of light and life. Countless other creative minds joined based on the concept and the story. Each one added something so beautiful that the end result is so much larger than I ever imagined.

My initial desire to write a book for a special child in my life has now visited and been made stronger by creatives spanning 3 continents, 5 countries and 5 states in the Union. A total of a dozen people have been involved in some small yet large way making this book a sign that hope has no boundaries and that although you may feel you are alone in this fearful time coping with DDH, you are not alone, there are people the world away that want you to know that the light is only a kiss away.

The book is intended for any child who is experiencing a time of confinement in their life. Whether confined by something physical like a cast or brace, or something psychological like fear, loneliness or grief, we all experience confinement in one form or another. A Butterfly’s Kiss is the heartwarming tale of a young girl finding hope amid life’s challenges. Change can be frightening, but it often brings new beginnings… just ask a butterfly!

One of my lines of the book is when Sir Butterfly finally meets Lady Faith and shares with her his experience.

Butterfly began, “Faith is your name and a remarkable thing, it can move mountains and is the source of our being. Your name has great meaning and in my life too, once ruled by darkness until light broke through. As the hard shell that trapped me started to crack, my life changed and I haven’t looked back. Slowly escaping from that dreadful hard home, my wings expanded and I no longer felt alone. A new body, stronger and bright, for I needed the dark times to appreciate the light. The time was important to prepare me you’ll see, heaven sent, a butterfly kiss, to you, from me.”

For the child who is or was in a spica cast or brace, this book will absolutely resonate. For the parent looking for a way to start a conversation about what is to come, I hope this book will be a resource you can use to spark that conversation. I truly believe this book is going to help children and families. I also want this book to help in bringing more information, research and possibly a cure to DDH. I also believe in the work of Dr. Price and the International Hip Dysplasia Institute and will be designating a portion of all proceeds from the sale of A Butterfly’s Kiss to be directed to this incredible organization.

To date, I have self-funded the creation of this book and am currently seeking help so I can finish the book. I am seeking support through a Kickstarter Campaign, where you can pre-purchase a copy which will allow me to complete the project and you to get your hands on the first edition due out this summer. Visit our Kickstarter here:  Kickstarter or visit www.abutterflyskiss.com for more information. My hope is that this book will help families, children and the Institute for many years to come.

A Butterfly’s Kiss: Faith has just come home from the children’s hospital, but she’s still far from well. Her world seems dark and dreary… but her faithful cat, Jasper, is determined to bring light back into her life. With the healing power of the butterfly and the wishes of dandelion fields, Jasper and Sir Butterfly embark with Faith on a journey towards hope.

A Butterfly’s Kiss is the heartwarming tale of a young girl finding hope amid life’s challenges. Change can be frightening, but it often brings new beginnings… just ask a butterfly!





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May 6, 2020 Karen Kerr

Karen Kerr

I’m Karen from Glasgow Scotland. I’m a mum to 7-year-old Lauren and married to a wonderful man named Grant. I wrote a book last year...

I’m Karen from Glasgow Scotland. I’m a mum to 7-year-old Lauren and married to a wonderful man named Grant. I wrote a book last year to help kids with DDH facing surger. My family had our own DDH journey and I felt I had to use all our negative experiences and turn them into positives to help other families.

Here is my story.

I have a bicornuate uterus which meant Lauren had reduced space for the whole of the pregnancy. She was also transverse breech and had to be born through a c section. They thought as a precaution due to the reduced space and the position she was in they should scan her hips. My daughter was diagnosed with bilateral hip dysplasia when she was two, however was scanned at six weeks and was missed. She has undergone open and closed reductions, femoral and pelvic osteotomies and multiple cast changes. She had 5 operations in total and 18 months in her Spica Cast.

Parallel to this I was going through brain operations for a brain condition I was born with so it was a very trying time. A low moment was when my husband and I were working 40 plus hours a week and getting no sleep and when home Lauren would be grumpy and want all of our attention. It felt like there was no light at the end of the tunnel and it would never get better. We had no one around us that understood what DDH was and understood what we were going through. There is a feeling of isolation and loneliness. I’m not sure if people know they’re doing it but they seem to distance themselves when you need them the most.

I feel that by sharing my experience and showing a type of “if we can do it anyone can approach” it can give families some hope that they will get there and there is light at the end of the tunnel!!

Lauren still gets seen by her surgeon on a yearly basis and her surgeon is really pleased with her hips and they are almost perfect which is fantastic. She does what every little girl her age would do, dancing, gymnastics, and playing with friends.

 “Spica Superheroes is available on Amazon for purchase and for download to a kindle.

Karen thanks Steps DDH charity for assisting with the publicity of the book and DDH UK for promoting the book as a resource for parents. Yorkhill hospital in Glasgow also hand it out to every child that it’s diagnosed at the plaster room.





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May 6, 2020 Rose

Rose

Rose Schmidgall is a remarkable young woman; she is a small business owner, a talented writer, photographer and a passionate advocate for hip dysplasia awareness....

Rose Schmidgall is a remarkable young woman; she is a small business owner, a talented writer, photographer and a passionate advocate for hip dysplasia awareness.

In 2014 Rose’s hip dysplasia journey began like many others do, one frustrating misdiagnosis after another. She eventually found relief 3 years later and has made it her mission to raising awareness of hip dysplasia and support the mission of the IHDI.

We are grateful and humbled by Rose’s advocacy, support and kindness.

On July 26th, 2016, I was diagnosed with developmental dysplasia in both of my hips, with small labral tears and FAI in both. Ever since 2014, I struggled with hip pain and incorrect diagnoses until I went to St. Louis in July of 2016 and was properly diagnosed. I had my first PAO surgery on February 22nd of 2017, hardware removal on December 1st of 2017, and have been struggling with uncommon complications since. I dealt with tendonitis in my illipsoas tendon, then muscle atrophy in the glutes, and now there’s a chance my labrum may need repaired, along with my IT band. My LPAO is scheduled for April 18th of this year tentatively depending on the status of my operated hip. My blog www.healthyhipsblog.wordpress.com is where I have been posting about my journey. I am working on writing a book about the whole experience, because it has been absolutely life changing for my faith in God.

I am 20 years old, from a small town in southeast Iowa, and am currently a portrait photographer. My hips interfere with my work, but I love what I do, and I will never stop. I have been going to physical therapy the past three years of my life, and I have had my whole perspective changed through the PAO journey. I have met some of the toughest people. Despite having their dreams crushed and living in chronic pain, they all have Persevered And Overcame. It’s tough though. The late nights of pain, the waiting, the uncertainty, and being misunderstood. We are a unique breed of people, and I hope more awareness can be spread.

I made this shirt because I feel very strongly about spreading awareness for hip dysplasia. All proceeds from the sale of this shirt went to support the IHDI.

In just a week or so, it will be one year from my first PAO surgery, and I have been fighting every single day since then to get my hips back. I have gone to physical therapy for the past three years of my life. I get asked every week by random people I see at therapy, or just out in public about my condition. I tell them about hip dysplasia, pull out my screws from my backpack, and sadly hardly any of the people know what I’m talking about. They might say “oh, my dog has that,” but otherwise, it goes so unnoticed. It’s left in the shadows of the medical world, and needs to be brought to light. Over the past twelve months, I have watched people, and close friends I made through the PAO network, suffer from hip dysplasia. There needs to be a change. Hip dysplasia needs to be something widely known. I’m so determined to make that happen, and if this shirt can help a little, then so be it. My hip dysplasia was misdiagnosed several times and totally unseen until I went to see a fantastic physician in St. Louis. Nothing would ever prepare me for the day I was diagnosed with hip dysplasia.

Here is an excerpt from a book I am writing about my DDH experience.

  Have you ever missed a step on a flight of stairs before? To me, it’s like a miniature heart attack that sneaks out of nowhere, taking your whole mind and body by complete surprise. When your foot lands on that vanishing wisp of air instead of a solid step, your heart momentarily skips a beat, and it feels as if the whole world around you screeches to a halt, everything passing you by in slow motion. The adrenaline jolts to the rescue and balance is regained, but your body is still shaking from what almost ended up disastrous.

            Take this experience, making it one thousand times more dynamic, and this describes how I felt when I received my medical diagnosis of developmental bilateral hip dysplasia. Instead of missing that single step, it felt like I had just fallen down the entire staircase, and was laying in shock at the bottom.

            I sat on the crunchy white medical paper, and still remember my whole body freezing up. Everything became inaudible in my head, and all I could feel was my heart beat slowing down. I don’t know what I said back to the resident doctor who was describing the x-rays of my hip, but I do know my mind was spinning in all different directions. I felt my gut tighten into a large, uncomfortable knot, my muscles tensed, and I tried my best to hold back in the confused tears that were begging to stream down my cheeks. It was a complete blow. It had come out of nowhere.

            I had never felt true heartbreak before in my life, but in that one sentence spoken by the resident doctor, I could feel the walls of my heart collapsing into nothing, along with all the confidence I had brought into the room. If my hopes and dreams were visible in that very moment, you would have seen them crumble from my hands to the floor like a hopeless mess. I wanted to scream, I wanted to cry, I wanted to run out of that small room, but instead I sat frozen in shock. Those four words he spoke in that span of five seconds seemed to hang in the sterile-smelling air for what seemed like an eternity, until I slowly opened my mind to accept this new reality for my life.

            “You have hip dysplasia.”





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May 6, 2020 Esmé Kelly

Esmé Kelly

Hi! I am Michelle, Owner of UK based ‘Esmé & Frog – Spica Clothing’, and more importantly Esmé’s Mum! Esmé is an IVF baby (ICSI)...

Hi! I am Michelle, Owner of UK based ‘Esmé & Frog – Spica Clothing’, and more importantly Esmé’s Mum!

Esmé is an IVF baby (ICSI) we tried for 10 years to have a child and were so blessed when the Ivf worked on the first cycle!

At 26 weeks I lost all my fluid and Esmé was born on Boxing Day at 34 weeks. She panicked us when she stopped breathing shortly after birth but was fine after antibiotics and a week in NICU. We were told she may need physio for her legs later on. Her legs were all over the place!!

And at the time we were more concerned with her heart and her weight.
And just getting her home!!!

At her 6 week check our doctor commented on her extra fold and we were referred to orthopaedics where she was fitted with a Pavlik Harness.

After only 2 weeks the Pavlik Harness was abandoned.

We were then referred to Great Ormond Street Hospital where we were told Esmé would need a closed reduction. I was in total shock as we had been told at Esmé’s last scan at our local hospital that they would probably just try the Pavlik Harness again!

So we got ourselves prepared for the op. Tried to move as we were up on the 2nd floor with no lift but to no avail and brought a new buggy, high chair and went through Steps Charity to get a car seat.
I joined the hippy baby group and tried to buy oversized clothes that Esmé would be able to wear.

Esmé had her op and it was horrendous. We were distraught. It was a truly horrible experience- we felt as though we had only just got her and now we had a situation in which we could loose her! At only 5 months old. All seemed well. Esmé had 3 months in the cast but 2 weeks out and her leg didn’t seem right so we scheduled an early X-Ray. The closed at failed.

She had come out of the cast with such long legs.

Esmé had to teach herself to sit up again, to hold her own weight and by the Summer was coasting and crawling but in the August she had her open reduction. We had got ourselves into a more suitable home with ground floor access ready for this op.

Esmé had an open reduction and a femoral oestonomy on our wedding anniversary and it went well! (Medically) but Esmé was much more distressed this time. We wish we had opted for the mild sedative as she was so panicked whilst having the anesthesia that she suffered night terrors for a month after. She was on morphine and then we had to wean her off of the morphine which was hard work! She was so much happier at home.

It was at this point I put her in a romper I had made and it fit! I quickly whipped up a load for her and decided to make them available to other mums too! They have poppers for nappy change and now I solely make spica clothing! My company is called Esmé & Frog. I’m on Facebook & instagram /esmeandfrog and we ship our spica clothing all over the world.

I thoroughly enjoy making spica clothing and love talking to the other parents about their experiences and being of help where I can!

At her 6 week review the x-ray looked good and the femoral head was finally forming so now we are waiting to be seen again in May to see where we go from here!

Esmé is happy and walking with her walker. We just pray that this is the end of it all now and our little miracle will be walking soon!

To view our spica clothing please visit us:

Website: https://www.esmeandfrog.com/

Instagram: https://www.instagram.com/esmeandfrog/

Update: August 6th, 2019: We have since found out that Esmé has a chromosome disorder. A microduplication of chromosome 16p13.11 and will require further operations on her hip & leg.





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May 6, 2020 Taylor

Taylor

In July of 2012 I started my hip dysplasia journey. Like most hip dysplasia journeys, it has not been easy by any means. Over the...

In July of 2012 I started my hip dysplasia journey. Like most hip dysplasia journeys, it has not been easy by any means. Over the years, I have suffered through many unnecessary tests and many false diagnoses. There were many nights of little to no sleep caused by pain that ice nor heat could alleviate.

When I first started seeing doctors for my pain no one thought I could have adult hip dysplasia; I actually diagnosed myself with hip dysplasia and asked the doctor providing my care at the time if he could check me for adult hip dysplasia as I had completed my own research and had come up with the diagnosis of Developmental Dysplasia of the Hip (DDH). He shut me down and stated that hip dysplasia is “caught in infancy” and that “there isn’t any way that I could have DDH”. I finally convinced that doctor to send me to an outside provider and was referred to an orthopedic specialist.

After seeing a few specialists, I finally had my answer to my pain, adult hip dysplasia. That is an appointment that I will never forget; the doctor walked in the room, took one glance at my x-ray’s and said “you have adult hip dysplasia”. I immediately broke down and started crying in the exam room. I was so frustrated because I was previously told that there was no way that I could have hip dysplasia as an adult. While this diagnosis should have come as no surprise to me since I had completed so much research I was still shocked, frustrated, and scared.

He said that he believed that I needed a periacetabular osteotomy (PAO) to relieve my pain and had sent to me Chicago, IL for an opinion on the course of treatment that was best in my situation. As I did so many times before, I conducted my own research on the treatments and also on hip dysplasia specialists. I ended up also seeing doctors in Boston, MA and Columbus, OH to make sure I exhausted all of my options. I ultimately ended up in Columbus, OH for my hip surgeries.

It took consulting five specialists until I got a correct diagnosis of hip dysplasia and I personally decided on getting opinions from three hip dysplasia specialists to decide on whether or not to have the periacetabular osteotomy surgery since it is such a complex major surgery.

To date I have had the following surgical procedures:

  • May 7, 2013

Right hip arthroscopy (labrum repair and capsular plication)

  • February 25, 2014

Right hip periacetabular osteotomy

  • November 20, 2014

Left hip periacetabular osteotomy
Left hip arthroscopy (labrum repair and FAI impingement removal)

  • July 30, 2015

Right hip hardware removal
Left hip hardware removal
Right hip arthroscopy (bursa removal)

  • June 1, 2016

Spinal cord stimulator seven-day trial

  • July 27, 2016

Spinal cord stimulator permanent implant

  • June 5, 2018

Left total hip replacement

Without these procedures, I do not know what my quality of life would be today. These surgeries gave me the ability to walk more than five minutes without being in excruciating pain, gave me the ability to finish college, and also gave me the opportunity to accept my dream job after graduation. Prior to my PAO’s I could not accomplish the simple tasks of grocery shopping or walking around my small hometown university campus. In fact, I dropped all my college classes the semester I was getting diagnosed due to the constant pain.

Even though I have faced MANY setbacks in my recovery due to other underlying conditions, I am so thankful for so many who have put me back together so many times. My amazing surgeon and his staff, along with my pain management doctor who has been able to give me a lot of my life back. While I will always be battling hip dysplasia and pain, I can only hope that someday in the future that ALL hip dysplasia cases will be caught in infancy and that not a single case will be missed.

Due to all the struggles I have personally faced and my own battle with adult hip dysplasia it is so important for me to raise awareness. This is why I have started to put on an annual race in Columbus, OH called the “Hip Hop 5K, Columbus”. This race will raise awareness for hip dysplasia and all proceeds will go straight to the International Hip Dysplasia Institute (IHDI) so they can continue their research for better treatment options.


The First Annual Hip Hop 5K, Columbus will be taking place in Canal Winchester, OH on Saturday September 15, 2018 at 9AM. I would love for you to come out and support the cause! You don’t have to live in the Columbus, OH area to participate. In fact, I have already had several people reach out to me from surrounding states about the race and about traveling to come and participle or volunteer. If you can make the travel arrangements, please come and join us!

Please don’t hesitate to contact me if you have questions about The Hip Hop 5K, Columbus. You can email me directly at: columbushiphop5k@gmail.com

You can find more info about the Hip Hop 5K, Columbus at: runsignup.com/columbushiphop5k

I know there are other stories out there like mine and it is important for others in my position to remember to do their own research, to not give up, and to keep pushing through until they find the cause of their pain; even if it is not due to hip dysplasia. Hang in there!





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May 6, 2020 Nancy

Nancy

We are so pleased to introduce Nancy Muir. A hip dysplasia patient, ultra-marathon runner and a supporter of IHDI. She has set her sights on...

We are so pleased to introduce Nancy Muir. A hip dysplasia patient, ultra-marathon runner and a supporter of IHDI. She has set her sights on running a 100-mile race to raise awareness of hip dysplasia and support for IHDI. We are humbled by her advocacy and support. To learn more & support her efforts please visit: https://miles4hips.com/

I am a 35 year old pediatric physical therapist and post-graduate student living and working in Colorado.  I have completed 27 marathons and ultra marathons over the past 15 years and am on a mission to add four more races this year, including my first 100 mile race.  Although I have dreamed about attempting the 100 mile distance for over a decade, my hip dysplasia diagnoses put a damper on this pursuit.  For the past 4 years I have spent a great amount of time learning about this condition, networking with other people who have this diagnosis, undergoing multiple hip surgeries, and rehabbing, rehabbing, rehabbing!

My decision to return to running after these surgeries has not been taken lightly.  The verdict is out on whether or not dysplastic joints (even after reorientation surgery) belong in running, and there are  many patients with hip dysplasia and surgeons who would not agree with my decision to attempt this run.   But through my patient care and personal experiences I’ve learned that life doesn’t always go exactly as you plan, and I don’t want to live a life of fear and regret.  I feel incredibly blessed to be on this side of hip dysplasia.  I don’t know the fate of my hips or just how many miles they have left in them, but, for now they feel strong.  For many others, hip dysplasia means a life of progressive joint degeneration, pain, and disability, and not everyone with this diagnosis is able to fully return to the life and activities they enjoy.  And this doesn’t seem fair.

I want to make my quest to run 100 miles more than just a personal goal.  I want to use this journey as a mission to raise awareness about hip dysplasia and to support the International Hip Dysplasia Institute in their mission to promote education, research, and innovation.  I invite you to support me and this organization by joining in this effort.  Together, we can make great things happen!





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May 6, 2020 Adeline

Adeline

Meet Adeline, our strong, tough, happy daughter who has brought so much inspiration and joy to our family. Adeline is our first child, born in...

Meet Adeline, our strong, tough, happy daughter who has brought so much inspiration and joy to our family. Adeline is our first child, born in June of this year. She was frank breech for most of my pregnancy, so when she was born via C-Section the doctors pretty quickly picked up on the hip clicking on her right side. My husband and I had never heard of hip dysplasia, so the news was scary and saddening. At 9 days old Adeline was placed into the Pavlik Harness. That was an emotional day for us, but did not even seem to faze her – she is a tough cookie. We went in for an ultrasound at 3 weeks old and were surprised to find out that her right hip was partially dislocated, but the left worse as it was fully dislocated. After giving the harness a few more weeks, our doctor determined it was not making progress like it should.

At our last appointment, on Adeline’s 3-month birthday, we were pleased to find out that the right hip had corrected itself, but disappointed to hear the left was still fully dislocated. We were advised to schedule a closed reduction. She will be going in mid-November at 4.5 months for that procedure and we are hopeful that this will correct her left hip. We are preparing for life with the spica cast and the rhino brace following that operation, and are thankful for all of the resources IHDI offers and the support groups that are available.

Our journey with hip dysplasia is just getting started, but we are learning so much and determined to help raise awareness about this condition. It is amazing how resilient these children are and how they can cope with so much. I created a page for family and friends to share all about our adventure with Adeline in our lives and also about her hip dysplasia journey, too. We invite you to follow along with us as well at adventureswithadeline.com.

Thinking of all the other little ones going through this treatment and wishing only the best in your journeys.

Our DDH journey has inspired us to help raise awareness and support for the International Hip Dysplasia Institute. We ask you to join us on February 23rd, 2019 for the First Annual Sips for Hips Atlanta. Click here to learn more.





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May 6, 2020 Jessica

Jessica

My hip dysplasia journey is much the same as thousands of other families in Australia and around the world.  My husband and I had a...

My hip dysplasia journey is much the same as thousands of other families in Australia and around the world.  My husband and I had a beautiful new baby girl who happened to have two clicky hips when she was born.  I didn’t know what hip dysplasia was and I received a huge shock when my tiny little Mackenzie was put into a Pavlik Harness when she was 8 weeks old.  She had mild dysplasia in her right hip and her left hip was dislocated with severe dysplasia.  My husband and I were given little information (or perhaps we just didn’t take it all in at the time) and I was 100% devastated – I cried for two days straight.  Like other parents I knew that “it wasn’t that bad” and that “it was for the best” and “there are families experiencing much worse” but in all honesty, I found the whole experience to be traumatic.

In the beginning I wasn’t at all prepared and I struggled with everything.  I couldn’t find clothes to fit, I couldn’t find a good breastfeeding position, I couldn’t give my little baby a bath and her sleeping bag didn’t fit properly anymore.  Nappy changes were now really tricky, and she had an epic blowout on day 2 which I unsuccessfully tried to spot clean from her white harness.  Then we found out that Mackenzie’s femoral nerve had been pinched after her left leg stopped working.  This was all in the first week!

Then week 2 came along and suddenly, it became much easier.  We adjusted our usual habits, routines and baby clothes.  In no time at all we were all settled, and life went on.  Sure, I stressed about scans and reviews but the day to day stuff was a breeze.  Mackenzie was fine with the Pavlik Harness and so was I.  The total change in mindset that happens between weeks 1 and 2 is truly amazing.

Mackenzie’s treatment went from 24/7 to 23/7, then nights only over a period of 8 months.  At the time of writing this, Mackenzie is 3 years old with healthy hips.  In hindsight, it wasn’t so bad at all and we are grateful that we were able to treat this problem with just some straps and Velcro.  Mackenzie’s milestones weren’t impacted, and she wasn’t left with any emotional scarring (that we are aware of).  She has no memory of it whatsoever.

Hipsleepers is Born

During Mackenzie’s treatment I had to scour the internet for solutions to practical problems I encountered with the Pavlik Harness.  I desperately tried to find out the answers to questions like:  How can I stop nappy blowouts? What clothes can I dress her in? What sleeping bags will fit? What car seat do I need? etc etc.  It was really difficult, and I frequently bought things hoping they would work with the harness, only to find they didn’t.  I could have really used a “hip dysplasia shop” and I especially wanted to get my hands on a nice, thick sleeping bag that was just like the ones you find in baby shops but wider.  I had no luck.

Fast forward a year after Mackenzie’s treatment finished.   I was working as a lawyer for a small Melbourne firm.  I found the job to be stressful and difficult to manage with two little kids.  Desperate for a change, I decided to leave the legal profession behind and start something new.  This is how Hipsleepers came about.

My original idea was to sell extra wide sleeping bags in various warmth ratings for babies receiving treatment for hip dysplasia all over the world.  That idea quickly evolved to include swaddles, clothes and other useful things that I wished I had easy access to during our hip dysplasia journey including winter weight legwarmers, onesies with a high cut leg hole, nappy covers, wide baby bean bags, nappy change stuff, etc.  I got my mum, Kathy, on board as my business partner which was an added bonus as we work well together.

I have also set out to show parents the lighter side of life with a baby receiving treatment for hip dysplasia.  A lot of the stories and information online (like my story above) refer to the struggle and hardship.  I like to find the humour in life and I do my best to produce posts for our blog and social media that families might find useful, interesting and perhaps even funny!

Hipsleepers has been open for about 9 months now and it is by far the best and most rewarding job I have ever had.  We frequently receive happy, positive feedback from customers around the world which sincerely means the world to me. I love to know that our little business is making a small difference during a difficult time!

You can find us here:

https://www.hipsleepers.com.au

And follow us here:

https://www.instagram.com/hipsleepers_hipdysplasia_shop/

https://www.facebook.com/hipsleepers/

-Jess





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May 6, 2020 Tina

Tina

Hi, my name is Tina, I am an academic working in the field of psychology at Cardiff University. Currently my research is focused around exploring...

Hi, my name is Tina, I am an academic working in the field of psychology at Cardiff University. Currently my research is focused around exploring and measuring the broader impact of hip dysplasia on patients’ lives. I was diagnosed with Hip Dysplasia when I was aged 20, the diagnosis came as a real shock as I had always been very active, I was involved in competitive Gymnastics from an early age.

I was studying at University when I received my diagnosis, I had been suffering niggling pains in my hip which gradually became a constant dull aching pain and eventually stopped me doing impact sports. I was diagnosed quickly (within 6 months) and I underwent a PAO and femoral osteotomy. The surgery and recovery were very tough and life changing, I had 7 months off work and I eventually decided to change my career and I registered for a PhD in Psychology. Eventually I was able to return to sports and I also trained to be a fitness Instructor.

My PAO lasted 18 years, but as my health began to decline, I became very anxious and worried about going through surgery again. I spent a lot of time researching treatments and surgeons and in 2009 I had resurfacing surgery; the recovery was much easier than I had experienced with the PAO, and I was able to return to walking and sports quite quickly. Ten years later everything is still good, and I could not have wished for a better outcome from this surgery. I am back teaching group exercise and working full time.

My experience has led me to focus my research around Hip Dysplasia as there is very little work conducted in this field which encompasses the socio-psychological and economic aspects of the condition, particularly within the adult population. I work with a group of very committed people and our research spans several areas from measuring outcomes of treatments, supporting decision making in surgery, improving diagnosis and supporting rehabilitation. I hope that this long-term programme of work will support patients with hip dysplasia through what can be a daunting and difficult period in their lives.

To help us, we would very much value your support us in one core part of our work: to tell us your own story of the impact of Hip Dysplasia on your everyday life and wider family; and, to validate an outcome measure that we have developed, The ‘Quality of Life, Concerns and Impact Measure’ (QoLC&I),

  • What is the outcome measure?

We have developed a patient-centred, outcome measure which assesses the impact of the DDH, the ‘Quality of Life, Concerns and Impact Measure’ (QoLC&I). The measure is intended to be used by both patients and clinicians in discussions over treatment options and in the evaluation of treatment and post-operative rehabilitation. The measure explores a wide range of patient-significant domains, including pain, impact on exercise and sport, education, family life, social relationships, self-esteem, body image and quality of life.

  • What are you hoping to accomplish?

Measuring these concepts will help us to understand more about how DDH impacts patients over a lifespan. This project involves testing and improving the measure so that it is robust enough to use in clinical trials. We also intend to implement the measure in clinical practice to enhance the consultations with surgeons and others so that they are better able to understand the impact of your hip condition on your life and to help you to decide on treatments.

  • How much time will it take for me to complete it?

The measure will take 10-15 minutes to complete- it is mainly tick box answers.

  • How will my information be used

Gathering the responses from the measure will enable us to understand more clearly about how DDH affects you over the life course. Your responses will be read by members of the research team. We will also use these responses to help us test and further develop the measure.  All material will be anonymized to protect your identity.

Thank you for your interest.  To participate in this survey please visit: https://cardiff.onlinesurveys.ac.uk/pis-hip-consent

I’d also like to thank the International Hip Dysplasia Institute for supporting this endeavor.





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May 6, 2020 Annabelle

Annabelle

Annabelle Leigh was born August 9, 2017. Annabelle is our third child, she has two older brothers which keep her, and us, occupied. The pregnancy...

Annabelle Leigh was born August 9, 2017. Annabelle is our third child, she has two older brothers which keep her, and us, occupied. The pregnancy with Annabelle, as well as her birth, were normal and uncomplicated.

Our first notice of any concern was during her six month, routine well-visit with our Primary Care Physician. During the exam it was found that Annabelle would not put weight on her legs when we attempted to have her practice standing on her own power. The doctor recommended x-rays due to learning of a family history of hip dysplasia. Emily, Annabelle’s mother, had been born with hip dysplasia and treated with a brace immediately after birth, which helped prevent the need for surgery, although Emily continues to have residual hip problems to this day.

The hip x-rays for Annabelle confirmed her diagnoses of bilateral hip dysplasia. We decided to seek treatment at a hospital about 2 hours from our home. We made that decision because of recommendations from doctors in our area. Upon meeting with the pediatric orthopedist, we learned that because of Annabelle’s late diagnoses, surgery was our only option for treatment.

Surgery was scheduled but the surgical procedure was unknown prior to beginning the surgery. The treating orthopedist, was unable to proceed with a Closed Reduction option for surgery and decided to proceed with an Open Reduction procedure on the right hip. Following this procedure Annabelle was placed in a cast for two weeks until we returned for an Open Reduction procedure on the left hip.

Annabelle’s total time in a cast was approximately 9 weeks. This time was very trying to ourselves and our family who needed to learn the proper care that was required for Annabelle, as well as the cast.

After there was no longer a need for a cast, Annabelle was instructed to wear an Ilfeld Abduction Brace for full time the following two weeks. Currently, Annabelle wears the brace during naps and bedtime. Annabelle is now walking and continues to gain strength but will still require additional treatment and monitoring at the hospital.

Instead of being mad or upset , we have decided to put a positive spin on Annabelle’s diagnosis to educate and spread awareness to other families about hip dysplasia.  We were not aware how important the role of family history is with early detection of hip dysplasia and want to help other families not make the same mistake.

So with that we have decided to host a “Sips for Hips” event to raise awareness of hip dysplasia. Our event is called Sips for Hips Philly and will be held at Workhorse Brewing Company in King of Prussia, PA on July 27th from 12-3pm.

Visit: SipsforHipsPhilly.com to learn more.





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May 6, 2020 Hayley

Hayley

 My Hip Dysplasia story is unusual because it isn’t even mine. I was training at a boxing club in Warrington, UK in 2014 when...

My Hip Dysplasia story is unusual because it isn’t even mine. I was training at a boxing club in Warrington, UK in 2014 when one of the trainers introduced me to a young woman called Hayley. Hayley was training for her first amateur boxing bout and mentioned off-hand that she suffered with a condition called Developmental Dysplasia of the Hip. My interest was piqued, so she told me all about her struggle with this condition (that I had never heard of) along with all of the painful procedures she has undergone since her diagnosis at the age of 5, as well as those still to come.

Her story of training despite all of this was particularly moving, and inspired me to learn as much as possible while documenting this, as well as seeking out other people effected by DDH at various stages of the journey. I spend the next few years traveling around the UK, speaking to doctors, surgeons, physiotherapists as well as patients and their families in order to gain a true understanding of the impact DDH had had and will continue to have on tens of thousands of people every year. This research eventually assembled itself into a film called A Mile In Her Shoes, which completed in early 2019. The goal of the film is to spread as much awareness of DDH as possible, particularly to very young sufferers for which the early months of life are so crucial in terms of prognosis.

Throughout all of this, Hayley has not once lost her positive outlook on life or her desire to help others in a similar position. She now has a young son, and continues to train harder than ever! She will very shortly have the full hip replacement her previous procedures have been leading towards, which will hopefully be the last major surgery she has to go through.

To learn more about the film;

amileinhershoesfilm.com
facebook.com/A-Mile-In-Her-Shoes-Film-317581275806345/?modal=admin_todo_tour
twitter.com/DuncanPatrickMc





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May 6, 2020 Mary

Mary

At 20 years old, I suddenly began experiencing hip pain and had no idea why. Then I found out I was in a Pavlik harness...

At 20 years old, I suddenly began experiencing hip pain and had no idea why. Then I found out I was in a Pavlik harness as an infant, but my hip dysplasia was not corrected. My journey began with doctors telling me that I would eventually need hip replacements, and to avoid any high impact activity, but nothing could be done in the meantime. Ten years later I found a hip specialist who told me about the periacetabular osteotomy procedure, and where to find a surgeon who could do it. I had to travel 6 hours to this surgeon, and I felt like I was alone in this journey – seeking a specialized surgery that was performed by so few surgeons throughout the country.

After my PAO and recovery, I started a group on Facebook specifically for PAO patients. I didn’t really expect much from it, and to my surprise it has grown to an incredible, supportive community of over 5,000 people so far. I wish that such a community had been around when I began my journey, but I am thankful that these patients, parents and advocates are able to support and learn from each other now. We are all in this together!

As I learned more about hip dysplasia, I discovered the importance of early screening, especially if there is a family history. I pushed to have my son screened, and even had to go directly to a pediatric hip specialist after the pediatrician said he did not need any further screening. He was found to have bilateral hip dysplasia at 5 months old, and he was in a hip abduction brace for several months. During that time I also researched and learned a lot about baby carriers, and found that a wrap (although somewhat difficult to learn to use initially) worked best for me while he was in an abduction brace. We returned to this specialist every year for followup x-rays until he was cleared. Although I was screened and was in a brace as an infant as well, the followups and continued monitoring were missing from my equation, and I do wonder how my journey could have been different if that had happened for me.

Through continuing education and advocacy, my hope is that fewer adults will have undiagnosed hip dysplasia and need major corrective surgeries. I am grateful for everyone who shares their stories and works to spread knowledge about this issue!





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May 5, 2020 Joan’s Story

Joan’s Story

I was born with DDH and had a plaster cast when it was discovered. Only one hip joint worked but I walked fine till age...

I was born with DDH and had a plaster cast when it was discovered. Only one hip joint worked but I walked fine till age 30 when osteoarthritis in hips meant I had to use a wheelchair for 2 years. Got walking again using walking stick for a while. I had my third child aged 42 and walked with no help but increasing pain till aged 70 when got wheelchair again so now no pain and I live alone and have just written my memoir ‘Winning’





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May 5, 2020 Christine’s Story

Christine’s Story

Hello! I am so happy to see this website. I am 44 years old. I was born with hip dysplasia. It was not caught until...

Hello! I am so happy to see this website. I am 44 years old. I was born with hip dysplasia. It was not caught until I was 10 years old. I have always had pain in my hips and walked funny. My mom took me to the doctor. and they said I need to have bilateral pelvic osteotomy. I missed the whole 5th grade. I was in a body cast, then a wheel chair and then crutches. they did the right one first then 6 months later the left. I was so young and had no clue of what I had. I returned to school in the 6th grade. I was told by my doctor not to run on cement, gain a lot of weight and that I would have to have my children c-section. When you are 11 you really do care about that stuff.

I lived my life had three children. At 32 my hips started to bother me. I had not been to an orthopedic in all of those years (big mistake and shame on my mom) lol. They tried cortisone injection, but the pain was too much. My hips had brought me down once again. I had bilateral hip resurfacing in 2000 (right) 2001 (left). Due to the surgery my right leg was longer then my left. It took me 2 year to recover from that surgery.

Once again going through life and then in 2010 I start to have a very bad pain in my groin on my right side. I knew something was wrong. I had moved at this time so I had to find a new orthopedic. He did testing and came up with nothing. He told me he did not see any reason for revision. I got a second opinion. This doctor ordered me a cat scan. He told me that the prosthetic was breaking down and was deteriorating my bone around the prosthetic. He told me I had to have revision on my left and he said the right one was the same. I had my left hip done April 2011. Once again my hips had brought me down. I had the right one done Dec. 2011. I had to quit my job after this last surgery. My legs are weak and I suffered a pelvic fracture in March of 2012.

I am praying that these hips will jump back up and take some control. 🙂 This has been a very long journey. A journey that I don’t want other children to have to go through. I will spread the awareness. I thank you for this site I don’t feel so alone in this. I was beginning to feel like a wimp after having to quit my job. lol Thank you





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May 5, 2020 Heather’s Story

Heather’s Story

I am now 23 and just graduated from college: Mine is a story of amazing grace and miracles, yet it is still difficult for me...

I am now 23 and just graduated from college: Mine is a story of amazing grace and miracles, yet it is still difficult for me to share. I do want to invite you to take a walk in my shoes. Largely because of my pride, I have never before shared all of these feelings and emotions with many people. I pray that throughout this journey you will see God’s powerful hand at work. He is the Author and Perfecter of all things, including my life and my story. Sometimes it is difficult to see God’s fingerprints; but those are the seasons through which we must search for them ever harder. With each of my steps, there have been tears of joy and tears of pain. There have been reports of hope as well as gloom… but through it all, God has worked miracles. –

After hours of agonizing labor, she was a mother for the first time. She waited and waited for the doctor to come back and hand her a beautiful baby girl. The doctor returned and declared that there was something wrong. “She has bilateral hip dysplasia.” These words were foreign to the first-time parents. “What?”

When I was born, neither of my hip sockets developed. Usually with braces, traction, body casts, etc., the sockets eventually form. As a result of the immediate treatments, my mother was never able to hold my bare body until I was almost six months old. Thankfully the left socket developed on its own – not normally, but it was functional. The right one hung limply by my side like a rag doll. “She will probably never walk, you know,” stated the doctor matter-of-factly. I have one of the most severe cases in the entire country… Thus began a series of treatments, doctor’s visits, 400 mile round-trip drives to seek help; thus began a nightmare. By God’s grace and help, my parents navigated graciously through my first three years.

They got pregnant again. At the age of three, there was not much about the birthing process that I could comprehend. Mom said she was having a baby, and that I could have one too. I was thrilled! My baby was going to be “born” on the same day as my baby brother. It was going to be a girl, and her name was Oscar, yes Oscar! Amidst the excitement, my parents encountered another blow as the news that my precious baby brother was to be born breech; a sure sign that he would have hip dysplasia as well. They could do nothing but watch, wait and pray. October 12, 1992, my little brother was born. Unexplainably, he was born completely healthy and without any complications. Just after we brought brother home from the hospital, I went in to have a major surgery. This would prove to be only one of many.

When I was younger, it was incredibly hard to understand why I had to be “different.” I wanted to run and play with my friends at recess, but I couldn’t keep up. I wanted to go sleep over at a friend’s house, but I was embarrassed because I would have to bring my leg braces. Around age three, I had a serious surgery that left me in a body cast. I a fiberglass cast held me hostage from my toes to the top of my ribs. I remember one of my aunts entering the hospital room. “Don’t look at me,” I told her. She said, “Oh, sweetheart, why not?” “Because I am ugly…” and the tears began to flow. I just could not understand why I had to be different from everyone else. I hated going out in public. A four year old should not be in a wheel chair! The stares and the glares were burned into my memory.

While I did have a serious disability, I was never allowed to act like it. I applaud my parents for how they raised me. They told me that it was ok to hurt, but I could not take my hurt out on anyone else. They also said that it was ok to be mad and frustrated with God; I just could not stay that way. Following a surgery in 3rd grade, I was recovering at home playing a game with my little brother. I was losing and decided to throw a temper tantrum. My mother still disciplined me and sent me to my room. I was shocked “But Mommy, I am hurt,” I whined… sternly, she sent me down the hall on my crutches to my room. At the time I was oh so mad! Now, I thank her and my father for not allowing me to use my disability in a manipulative way. As I grew older, I began to understand that my parents could have easily babied me through my childhood – heck, it was traumatic! But in their great wisdom, they did not. I was special, but not a brat; I was given attention, but was not a drama queen (well, maybe just a little bit!)

My sweet little brother has always been there to take care of me. We attended the same school, and although he was three years younger, he was the first one to help me, to defend me, and to check on me. He never voiced it, but I know he has dealt with his share of jealousy and frustration. Instead of getting angry or envious, he became my friend. After every surgery he was the first one waiting for me. As soon as I was awake, he would be at the side of my bed ready to play dinosaurs or color with me. He has been one of the greatest blessings of my life and I don’t know what I would have done without him!

The summer before my 5th grade year, my family and I were on a vacation to San Antonio, Texas. We had such a great time at the zoo, at sea world, and the Alamo. On the last evening of the trip, we ate in a small diner next to our hotel. Sleepy and full, we stood up from the dinner table. That is, everyone but me. I tried to stand and with an explosion, my right hip dislocated. I cried until I could not breathe. My Daddy carried me back to the hotel. When we got home to see a doctor, there was no doubt that my hip had snapped. Fifth grade was a difficult time. I had to walk with at least one crutch; I could bear no weight on my right leg without some kind of support. Nearing the end of the school year, we went to see my doctor in Albuquerque, New Mexico. Dr. S agreed that something had to be done. My right hip was completely dislocated, and as a result was almost 8cm shorter than my left. Surgery was indefinite that summer.

In June of 2001, I was admitted to a Hospital in Albuquerque. Originally I was going to have to wear a traction boot to help pull my leg (which was 8cm higher than it should have been) back into place. Upon arriving at the hospital, Dr. S entered my room and announced that a simple boot would not be enough to do the job; my leg was far too misplaced. That evening I had a simple surgery to drill a rod through my right knee. The ends of the rod stuck out of my skin. Weights were rigged to the rod in my knee, and a week of hell began. Never have I been in such incredible pain. Sudden movements or jerks would send me into shock with pain. Of course, while in traction I would have a dream about being on a roller coaster. Vividly, I still remember what happened: the ups and down, the curves, twists and turns, and then the jerk. My body did exactly what my mind was telling it. It jerked violently as the “roller coaster” rounded a corner. I woke up screaming in pain, my mother who was sleeping in the chair next to my bed woke equally startled. Nurses came running into the room and have to give me a shot to sedate me and get the pain under control.

However, the worst of the pain was not over. It was the morning of the surgery, and I had to be unhooked from traction. Knowing the pain would be unbearable, I had already been given sedatives and pain medicine. The doctors come in to my hospital room and began to remove the weights attached to my knee. The traction had worked and my legs were now of equal length again. Yet, when they removed the final weight, my hip dislocated once again. Like the snap of a rubber band, I felt my hip jump up to my ears! Screaming with pain, the room went black and I was unconscious.

The fusion was successful although it did take away all motion in my right hip joint. I had to swing my leg to walk and was not able to put my shoes and socks on by myself. It was an adjustment but I did feel better than I had in quite some time.

Two years later, knowing no boundaries, I decided to try out for the cheerleading squad. Against all odds – mind you, I can’t jump or tumble due to my hip – I made it. The next four years I spent burning with passion on the sidelines. For the first time in my life, I felt normal. I felt as if I fit in.

My junior year of high school I began struggling with chronic, intense hip pain again. Concerned, my parents and I packed up for another trip to Albuquerque. My appointment was the day before my football team was to play for the state championship. A welcomed distraction, my mind was on the team and getting to the game! However, upon holding up my x-ray, the doctor jolted me back into reality. “How in the world…” The confusion and fear on his face alerted me that something was seriously wrong. He then pointed out to my family and I the giant crack in the metal rod in my leg. Yes, this is a tough, thick piece of metal that due to my “active lifestyle” I had managed to not just crack, but break in half. My heart broke as the doctor looked at me and said, “Maybe you need to give up cheer.” Pleadingly, my sweet Mother looked at me with tears in her eyes begging the same thing.

My head is as hard as a rock and I was just determined to ignore it, work through the pain, and get to the state game. Upon arrival at the football field, my squad embraced me inquiring of my appointment. “It was fine…” We had a job to do and at this moment – I was still cheering. The boys won and we screamed in victory and posed for pictures. As we climbed back on this bus, I had the sinking feeling that this could have been my last game to cheer… ever.

Through some prayer, my Mother’s desperate plea to have me stop before I do more damage, and basically my stubbornness, I was decided to finish out the season. After all, state cheer competition was only five months away! The pain was intense and I consumed prescription pain pills as if they were M&M’s. We went to state cheer and won 2nd place, losing by only one point! I did not cheer my senior year… it was difficult to let go of my passion but I worked as a youth league coach to compensate for my sweet sorrows.

After graduation, I moved to Texas to attend college. The rod in my hip totally severed, I walked around with bone grinding on bone. The pain was now excruciating and began to interfere with my social life. As a college freshman I declined invitations to play sand volleyball and ultimate Frisbee simply because I was in so much pain – let me remind you, I am a stubborn person. For me to admit that I “can’t” do something is HUGE.

Unfortunately, we were at the end of the road and without many options. I had already had eleven surgeries and those held a minimal success rate. The only option left was a total hip replacement… at the ripe age of twenty, the last thing I wanted was a hip replacement. Wanting desperately to enjoy my college experience, I put off making the dreaded decision. The doctor and my parents were patient and complied with my wishes, however in December of my freshman year of college, the broken portion of the rod had to be removed from my femur. The surgery was minor – the goal being to allow my femur to build back bone before a total hip replacement was possible. I returned to school in January on crutches and finished the semester.

The pain continued to increase and also continued to negatively impact my friendships, relationships and mental health. Living with intense, chronic pain is not something I wish on anyone. The summer between my sophomore and junior year of college, I made the decision to have the hip replacement. Reason and logic told me to wait until I graduated, but desperation, pain and love made the decision easy.

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One of the most difficult surgeries I have had, I came through with a long road to recovery. Because my hip had been fused for almost ten years prior, all of the muscles, tendons and ligaments surrounding my hip joint were beyond atrophied… some the doctor even considered, “dead.” It was going to take over a year for my body to recover and build muscle that never existed prior. My surgery was June 25, 2010… in August, I returned to school to take 16 hours worth of classes and serve as the Director of Freshman Orientation for the university (this was a bad idea). Thanks to God’s grace and the help of many friends, I went to physical therapy three time a week and managed my class load.

My hip just celebrated its two year anniversary. Yes, I celebrate June 25th every year. In addition to it being my best friend’s birthday, it was the day God gave me my life back. It was the day that He used a doctor to heal my body. This healing has been long awaited… many tears and many arguments with God. I desperately believed in and desired a miraculous healing, however through my pain, so many more people were able to witness Christ’s faithfulness in my life. It is my testimony. No longer do I run from my pain, but rather embrace it as Paul did his “thorn in the flesh.” If this is the very tool God chooses to use for His glory in my life, who am I to stand in the way and argue?

I was in physical therapy and worked with a trainer for over a year and a half. God has been faithful and has used my story to help other people. I have a very special place in my heart for the Ronald McDonald House… ask God for divine appointments and He is more than happy to oblige! Today I am healthy and well – there still is pain and stiffness and some limitations, but trivial compared to my younger years. I help coach a cheerleading squad, scuba dive, compete in pageants and even skydive!





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May 5, 2020 Nancy’s Story

Nancy’s Story

It wasn’t until the last two years at the age of 37 that I was diagnosed with retroversion hip dysplasia. In late 2010, I felt...

It wasn’t until the last two years at the age of 37 that I was diagnosed with retroversion hip dysplasia. In late 2010, I felt a sharp pain in my right hip in the groin area. I did not know what to think. I just dealt with it until the pain become so bad that walking was a chore. I made and appointment with a well known and highly recommended hip surgeon here in Virginia. It took me over four months to get an appointment with him. On my first visit and in less than 10 minutes time the doctor mentioned that he thought I had a connective tissue disease. I had seriously thought that I had Ehlers Danlos five years prior but then a local rheumatologist nixed that… I put it on the back burner.

My hip surgeon did a series of x-rays and was able to make the diagnosis of hip dysplasia as well a FAI. He recommended that I try physical therapy for to see if that would help. During this time I also had a cortisone injection to try and calm the pain down. Physical therapy helped me strengthen the muscles around the hip but that was about it. After working with my PT and things were not getting much better I went back to my hip surgeon and I was scheduled for a hip chondroplasty. The hip scope worked. There where two labral tears that were removed. The relief that the hip scope brought was temporary and within less that four months I was miserable in pain. My hip was rubbing on the rim of my pelvis. My hip surgeon wanted to try and do as much as we could to delay the major periacetabular osteotomy surgery.

So within 11 months I was back in the operating room to have the PAO surgery. This was my 13th orthopedic surgery in my short existence. The surgery was brutal and pain was ungodly. I was bedridden for a month and out of work for just about five months. It was a great expense to be out of work not to mention that no one from my department at work called me or came to see me in the hospital. I did not even get a get well card until two months after surgery. I have only been back to work since December of 2012. Things were different when I went back most of my coworkers were very standoffish. I have been constantly reminded that I was out of work for five months. It has also been thrown in my face how hard my coworkers had to work while I was out. All of this made me feel really bad. Since my diagnosis of both EDS and hip dysplasia I have special American’s with Disabilities accommodations. There are several people who think I am faking all of “this” so that I don’t have to what is considered 2% of my jobs’ functions. And that is not having too get up and down 50 plus times a day to retrieve faxes from two fax machines. My manager has also betrayed my trust when she told a new hire that I had gotten my doctor to write a note to excuse me from this function. I am only 7 months post-op from the PAO surgery and I am still not 100%.

After my diagnosis of hip dysplasia I found this website and I read the statistics pertaining to employment and it is true. This has a great impact on one’s life but spiritually as well as financially. Even though my story seems like a bad one it really isn’t. My diagnosis of EDS as well as hip dysplasia has been life changing. I have learned a great deal and I hope that I can help others that are faced with the same challenges I have been given.





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May 5, 2020 April’s Story

April’s Story

Wow! A site to inform others about hip dysplasia! And a place where they don’t ask, “like the dog?”! My mother was born with hip...

Wow! A site to inform others about hip dysplasia! And a place where they don’t ask, “like the dog?”!

My mother was born with hip dysplasia in 1939. In the 40s she spent 8 years on crutches due to her condition. It didn’t help. She grew up and as an adult suffered tremendous pain from the short leg and the deformed hip. Why she didn’t receive the help she needed, I don’t know. I wish she had. Especially after it was discovered that I, too, was born with it. Doctors missed the condition in me. When my mother had it, it was thought by her doctor (and maybe others as well) that the condition was prominent in boys, not girls. We now know that it is girls that tend to develop this condition. Anyway, I always walked “pigeon-toed” and my mother and grandmothers always swore I walked that way to get “new” shoes. As a teenager, my knee began to sublex and I began the first of many years of painful sublexes. I was petrified of needles, so when the fluid would gather after my knee would sublex, I rubbed the fluid out away from the knee to avoid it being drained. Eventually, my pain tolerance grew very high and I could literally walk through a sublex and keep going. I also had a short leg and my body compensated for my hip in many ways although I remained ignorant of my condition.

Things began to unravel when I was about 28. I was on travel at a training session for my job when my back muscles seized up and I couldn’t move. I was in immense pain for several days before I finally made it to a chiropractor who took x-rays and discovered a few things about me. She discovered the hip dysplasia (it didn’t really register at the time because my hip didn’t hurt and I didn’t fully understand), my spine was too straight and I had a lot of arthritis in my lower back from an injury I received as a teenager. And she noted my short leg. A lift in my shoe, several adjustments and treatments later, I was on my way again. Or so I thought.

One May I blew out my knee rounding second base in a softball game. The knee went out and it was a terrible one this time. I couldn’t walk this one off, not when the knee would sublex with just the slightest touch of my toe to the ground. No sir, I wasn’t getting out of this one. Not too long after this incident, a friend of mine referred me to the doctor who would become a savior to me.

My first visit was a memorable one. Dr P sent in a college intern to speak with me. He would learn really fast that I was a patient that he could use to enlighten and educate his interns who were becoming lax in their patient care and too confident in their suggestions for treatments. The intern suggested physical therapy to strengthen the muscle and I raised my hand to stop him. I said, please don’t waste my time by suggesting physical therapy. It won’t work. And as I said this, I picked up my kneecap and rolled it around and said, “Does this look like a problem that will be fixed by physical therapy? If that is all you are going to suggest, I might as well go home.”

The doctor came in at that moment and said, “She’s right.” And he held up the x-rays he had taken. I was scheduled for knee surgery. Because of the “way I was made” he would have to cut the muscle, tighten it and reattach it a little farther over so that it would keep my kneecap in place. He saw that the hip dysplasia was the cause and he was doing what he could to try and fix that. That first surgery was the first of 3 knee surgeries. The hip and short leg also took its toll on my back. I eventually had to have an IDET (Intra-discal Electro-Thermal) procedure. Then, in 2005, my right hip started to hurt me. First, it was an occasional stabbing pain. Then it started to collapse under me. I sucked up the pain because I was still fairly young. Too young, really for a hip replacement. I was in my late 30s by then. In 2008 I had a labral tear in my right hip. The doctor couldn’t fix the tear due to my condition so he cleaned it up the best he could to buy me some time.

In December 2009 I lost my fight against this condition when I was passed in the mall by a little ole lady with a walker and humpback. I burst into tears. I had lost all sense of self confidence. I constantly walked with a limp due to the pain and I had all but had to stop exercising because it hurt so badly to walk. It hurt to do anything. I wasn’t sleeping. I wasn’t doing much of anything. I had been doing Weightwatchers for years and had met my goal and became a lifetime member….until 2008 when the pain became so bad the weight started creeping on.

I finally was given my total hip replacement in February 2009. On my brother’s birthday. His birthday, my present! I knew that the moment I woke up, that the doctor had completed the surgery because I felt AMAZING! i felt like I was lying on a pop bottle but it was much better than the pain I had been feeling! I was thrilled! I had a new hip! The “cadillac” of titanium hips my doctor said. I felt elated and was walking on clouds!

Since the surgery, I have enjoyed all my activities pain free. My leg is now the same length as the other one and I love every minute of life with this new hip. I do have some pain in my left hip because it did so much work in compensating for my right hip, but it’s minimal and I treat it with care and do exercises with it to help it heal. And of course I have residual pain and occasional flare ups in my back due to the conditions that started before my hip was replaced but the best part is my hip dysplasia is gone and my hip feels great!

I want to do what I can to support those that have this condition or have a loved one that has this condition. There is just not enough awareness out there and we need more. It’s not just dogs that get this condition. A lot of people have this condition and don’t know it. I need to do something to help others and encourage those that need encouragement and support. I hope my story helps someone. Anyone.





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May 5, 2020 Heather’s Story

Heather’s Story

I was a breech infant, born naturally, and had a clubfoot and bilateral hip dysplasia at birth due to this. My mother’s OB/GYN and my...

I was a breech infant, born naturally, and had a clubfoot and bilateral hip dysplasia at birth due to this. My mother’s OB/GYN and my pediatrician both chose to use the “double diapering” treatment instead of a Pavlik harness or the spica. The double diapers served the same purpose as the Pavlik, or was supposed to anyway.

As I got older, it was hard to tell what was the hip dysplasia and what was my joints (I had very loose ligaments), and so I was followed closely by a physician until it seemed as though everything had corrected itself. At 18 years old, I tore my labrum in my left hip, which is essentially the ligament that holds the hip to the femur. I saw an orthopedic surgeon, who specialized in hip dysplasia, and he explained that this was a very common injury for those whose hip dysplasia went uncorrected.

At 18 years old, I had to have major hip surgery in order to repair my labrum, and this was not a permanent solution. I will likely have to have a hip replacement at a young age, or a repeat of my previous surgery.

My mother was familiar with the Pavlik harness, having worked in health care for many years, and she asked the doctor why they wouldn’t treat me with it. They never gave her any answer other than “this will work better.” She says to this day that she wished she had fought for better treatment.





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May 5, 2020 Christy’s Story

Christy’s Story

I remember the day the doctor told me I wouldn’t be allowed to run again. I stared blankly back at him. Being an athlete had...

I remember the day the doctor told me I wouldn’t be allowed to run again. I stared blankly back at him. Being an athlete had always been part of my life. My identity. And although the hip pain had worsened dramatically over a period of only 6 months, I prolonged going to see an Orthopedic because I knew I was going to hear those words.

At birth, I was born with a condition called developmental dysplasia of the hip. My hip socket wasn’t aligned correctly. At only 2 years of age, I had surgery to help correct the condition. I was placed for 6 weeks in a double-legged cast. Growing up, my parents never focused on what I couldn’t do. I started gymnastics at a young age, then soccer, track, cheerleading, and my college dance team. Upon graduation of college, I ran my first half marathon. I was raised to believe my condition didn’t prevent me from completing any of my goals. I am grateful my parents instilled this faith in me at a young age.

However, as I progressed into my late 20’s, I could no longer ignore the pain that had worsened in a short amount of time. I was referred to Dr. S, one of the top Orthopedic surgeons in the country. It was then he said those words. “Stop running.” He recommended I get another surgery, called a Periacetabular Osteotomy (PAO). My hip X-ray showed the beginning stages of arthritis, and this surgery would preserve my own hip joint, and potentially prevent me from needing a total hip replacement down the road. February 2012, I went into the operating room. I spent five days in the hospital, and two and a half months on crutches. Four months off of work. For a year, three large screws were embedded into part of my hip.

Living in sunny San Diego, one of the most active and fit cities in the country, it seemed as if everyone around me was athletic and running. There were days I was depressed. I couldn’t imagine what a life without sports would look like. Thankfully, I found Yoga, which has now become my passion. I feel healthier than ever.

Today, I work as a Pediatric nurse on an Orthopedic floor. I assist in caring for young children that are placed in the same cast I was at a year old. I also care for teenagers that receive the same surgery I had as an adult. I am able to show parents of these children pictures of me as a child, in a spica cast, and help ease their worries that their children will be able to live a normal life. Since being a patient myself, I am now able to relate and connect to these children in a powerful way that I couldn’t before. My job has never been more satisfying and rewarding.





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May 5, 2020 Robyn’s Story

Robyn’s Story

This is my story, l’m 27 years old, I live in St Helens, Lancashire, England. I was born with NO hip sockets (they were flat,...

This is my story, l’m 27 years old, I live in St Helens, Lancashire, England. I was born with NO hip sockets (they were flat, with no shape to them whatsoever) and was diagonsed with bilateral developmental hip dysplasia.

When I was born the only treatment available was a craig splint, as a cast was only effective if there was shallow hip sockets. When I reached 6 months old, my parents were told that my hips had formed and I was going to be discharged. I was discharged only for us to find out, when I was 23 and having physio for a cartalige problem in my left knee, that my hip sockets hadn’t fully developed.

In my pre-teen and teen yaers I suffered from frequint dislocations, pain, and walked/ran like a toddler… I still do, much to my friend’s and family’s amusement.  In the last 2 years I have been refered to a specialist in DDH and had a dynamic arthrogram and multiple steroid injections.  I’m currently waiting for another one.I have made a deal with my consultant in regards to my weight, that if I lose enough weight to reach 14 stone then he will start the process for APO. I’m now at 15 stone from a starting weight of 17 stone.

I haven’t ever heard of anyone else being born without any hip sockets.





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May 5, 2020 Debbie’s Story

Debbie’s Story

Hi my name is Debbie and I’m a 51 year old bilateral CHD survivor. I was diagnosed at 13 months old. I was admitted to...

Hi my name is Debbie and I’m a 51 year old bilateral CHD survivor. I was diagnosed at 13 months old. I was admitted to the hospital where I stayed for six weeks in traction. I had a ten pound weight attached to each leg. At the end of of the six weeks I was put into a frog plaster cast and released to go home.

Over the course of the next two years I went through several cast changes. It was eventually changed to a shorter cast which stopped about mid thigh before I was able to come out of it completely. After the cast was removed I then had to wear a splint that kept my legs in the same position the shorter cast I was in. All of that was done and over by the time I was about 3 1/2 years old.

The doctor told my parents my left hip had gone back into place just fine but my right hip was still slightly out. He could do surgery or my parents could wait and see if it went into place as I grew taller. He said there was a 90% chance it would. Because of all I had already been through and the 90% chance it would go in on its own my parents decided to wait.

As time passed my right hip became more painful. At age 11 I went to an orthopedic surgeon and the xrays showed my left hip was fine but my right one was still slightly out. My first surgery was scheduled. A small part of the socket was clipped away and the ball of my hip was moved over. Two pins were put in to hold it there but were removed a few weeks later and I was on crutches for about a year.

The pain was better but always remained.

As the years passed I would dig my crutches out and use them from time to time. By age thirty seven the pain had reached a point where I could no longer take it and I was using a wheelchair when going anywhere that required a lot of walking. I went to see a orthopedic surgeon and this time the xrays showed my hip socket (what little I have left) is mostly flat and not much, at all, is over the ball of my hip and I have arthritis.

The recommendation was to have a pelvic osteotomy. After much thought I decided to have the surgery. That was 15 years ago. For the first few years it helped some. I live in constant pain which I have always have but since the surgery have lost most of the use of my right leg. I can walk but not without the aide of either a cane or arm cuff crutch. When I go shopping I always use one of the store buggies you drive and if there isn’t one I don’t shop. I was declared totally disabled in 2000.

I have two grown children 21 and 28 and two grandchildren 1 and 3 years old and thank God their hips are just fine.





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May 5, 2020 Deb’s Story

Deb’s Story

I was born October 21, 1949 to Dave and Thelma Moreen. My father, just out of the Navy, and my mother, a 20 year old...

I was born October 21, 1949 to Dave and Thelma Moreen. My father, just out of the Navy, and my mother, a 20 year old model, were living in an apartment in central Detroit. Dad was attending University of Detroit School of Law on the GI Bill. Mom stayed home with their new baby, Deborah. That’s me.

At about 9 months of age, I am told that I began to walk, only to be commented upon by Uncle Colin that I “walked like a sailor.” Mom and Dad had to agree. Something was wrong with their baby.

Without a penny to spare, my young parents could not afford to bring me to a costly doctor so Mom found that she could take me to Children’s Hospital  For 1 day every 6 weeks, Dr. W, a renowned physician specializing in Diseases and Injuries of the Spine and Extremities, donated his time for families like ours. Mom scheduled an appointment and, after 6 weeks, my parents and I met Dr. W for the first time. After being X-rayed, I was diagnosed as having Bilateral Congenital Hip Dysplasia. This could have been caused because I was born breach as, I am told, the doctors literally pulled my legs out first. (I was the first of 5 children born to Dave and Thelma and the only baby to have this condition. However, my only daughter, Molly, was born with Congenital Hip Dysplasia on the right side. That is another story which I will save for another time.)

Dr. W told my parents about the “Shriners Hospital for Crippled Children.” The goal of this hospital was to treat orthopedic injuries, diseases, and birth defects in children without charge. My parents met with the local representative and they encouraged my parents to leave me at their hospital for one year and they would treat me without cost to my family.  The only problem was that the Shriner’s Hospital was in Chicago, Illinois and Mom and Dad would not be able to visit because of the distance involved. Although the price was right, that was not an option as my Mother would not even consider being away from her baby for any amount of time. There had to be another way.

We returned to Children’s Hospital, which was a teaching hospital. Dr. W had an idea. It was 1951 and there was something new being done for babies like me. No longer were children having their hips fused and spending the rest of their lives with braces. Dr. W manually “set” my hips and put me in a full body spica cast.  Mom says I was anesthetized for the procedure. Even though I was so young, I remember the procedure when the cast was being applied. (I must have “come to” during that time.) I can still see (from my lying down position) a huge metal bowl painted white with a red trim containing a liquid in it and the long bandages being dipped in it. I watched the nurses helping the doctor wrap the wet cloth around my body. I was very much aware of NOT having my parents with me. I relive that feeling of being wheeled down the hospital hall on a gurney – watching the mint green walls go by, staring at that ugly ceiling. I can still smell that medicinal, antiseptic “hospital” smell. I was scared.

Mom says that shortly afterwards she was approached by an intern who was assisting in the procedure, (one of many medical students at Children’s). He took my parents aside and gave them some good advice. He said NOT to treat me as handicapped, but to let me crawl around and drag my casted body. If some of the cast wore out as a result, go buy some bandages at the drug store and reapply them herself. It was imperative that I not consider myself limited in any way. (My father relates that years later he met a family who had a child with the same condition. They did NOT give her free reign but rather, kept her in a swing. This person never exhibited any mobility nor thought of herself as anything but an invalid.) Dad says that they were told that I probably would never dance and would be wheel chair bound by the time I reached 45 years of age.

My childhood was normal. I ran, rode my bike, roller skated, and played as any young Michigan girl. Soon, I had 3 sisters and a brother…none of which had Congenital Hip Dysplasia. It wasn’t until I was 12 years old, in the 7th grade, when puberty kicked in. My hips were changing and I began experiencing pain when I engaged in any kind of sport or, even, walking more than a couple blocks.  At that time, my parents were living in Fowler, Indiana. Dad contacted Dr. W, who was still working in Michigan.

We drove to met with Dr. W. He remembered me and gave me a physical exam, took some X-rays and advised my parents to continue to let me grow. However, he suggested I NOT participate in Physical Education classes in the future. I am attaching the correspondence from that visit, where Dr. W says “if she learns to live within her own limit of activity that she can expect to live a normal life until probably in her late fifties or possibly her sixties.”

This is what happened after that.

  • I graduated from Purdue University in 1971 and lived on campus and walked to class.
  • Married Bill Beaton and moved to California. Began the first of many careers (usually desk jobs), including working in advertising agencies, law firms, the telecommunications industry, and most recently, starting a new chocolate truffles company, “1492 Chocolates” with my daughter in Colorado.
  • Experienced 3 natural births – 2 of which were 9 pound boys!
  • Had 5 Total Hip Arthroplasties, or THA. These surgical procedures involve replacing the acetabum and the femoral head.  The first two operations were done a year apart in 1982, 6 months after the birth of Alex, my third child. Most orthopedic surgeons I visited told me I was “too young” for the surgery because they did not know how long the hips would last. It was a new procedure, just recently developed in the early 1970s by Sir John Charnley, a British orthopedic surgeon, at Wrightington Hospital in Canada. Physicians did not know what would happen if, or when, a replaced hip would fail. They had been implanted in the elderly and the patient usually died before the hip wore out.
  • I pleaded my case to each and every orthopedic surgeon that I visited and finally, at the age of 33, I received my new hips.

These hips were done in Monterey, California at Community Hospital of the Monterey Peninsula. At the time, glue was being used. I remember the surgery as being many hours long, with medical staff dressed in something resembling hazmat suits. I was in the hospital 10 days. I could put weight on them immediately.

After the surgery, I was in need of a blood transfusion. This was the beginning of the AIDS crisis in America and I actually had to go back to the hospital at a later time to be tested for AIDS. It was all very secretive. I was given a number to use to book my appointment in their lab. My name was never used and was always referred to by that number. They notified me by phone as to the results. I was fine.

In 1993, these hips failed…first the right hip and then the left. I could tell because when I walked it felt like my transmission was slipping out of gear. That’s the only way to describe it. Then, it began to be painful. We lived in Tequesta, Florida at the time, and my surgeries were done (a year apart again) in Boynton Beach at Bethesda Hospital. It was my understanding that the glue had failed and had begun to destroy the existing bone. My socket had to be scraped out in order to insert a complete new prosthesis. My first set had lasted 11 years.

In 2007 I underwent Spinal fusion S-1 to L-3. This was necessary because my poor back took the brunt of my shallow hip sockets for the duration of my life and carried me through weight-gaining pregnancies. Eventually, it was just bone on bone. No problems with that now.

My 5th hip replacement/revision was done in October of 2012 and I am anticipating the other failed hip to be revised next spring. I scheduled appointments with two orthopedic surgeons rea that were available under my Kaiser Insurance plan.  Both surgeons balked at doing my “revision of a revision” because it would be unique and require special technique and a flange implant.  They referred me to an orthopedic specialist in Denver, a Dr. H. Dr. H’s business card touts that he is Board Certified as a physician who specializes in “Limb Preservation/Orthopedic Oncology/Complex Joint Problems.” (This was good news for me, with the added benefit that he treats people who have had cancer.  I have been a breast cancer survivor since 2011, undergoing bi-lateral mastectomies.)

Let me say one thing about Kaiser Insurance. Per their instructions, I saw two orthopedic surgeons in my “network,” each recommending the same group. This doctor is not only out of my network, but does not accept Kaiser Insurance. After a phone call to Kaiser, and supplying the necessary referrals, Kaiser agreed to pay 100% of my surgical costs for my upcoming surgery. I was scheduled to be admitted two weeks later.

In October 2012, I underwent hip surgery with Dr. H. I could not put full weight on that hip for a month, as the flange implanted needed to bond with my bones. I was told to imagine the flange as having like a “honey comb” surface that would meld with my hip socket.

Dr. H’s office works closely with The Limb Preservation Foundation, a non-profit 501c3, founded by Ross Wilkins, M.D., one of the original physicians in the office where Dr. H sees patients. This worthy enterprise’s goal is “to enhance the quality of life for those individuals facing limb-threatening conditions due to trauma, tumor or infection through research, patient assistance and educational programs.” Patients are treated free of charge with the highest degree of care. I cannot say enough good things about this Foundation. I cannot say enough good things about this worthy group of physicians. https://www.limbpreservation.org/

As of this date, I am doing very well. I will celebrate my 64th birthday soon. My daughter and I have opened a retail chocolate truffle shop in Historic Monument, Colorado. 1492 Chocolates is my latest re-invention of my life. I am pain free and walk without a limp. I can’t help but feel like an imposter “normal” woman. No casual acquaintance would know what I have experienced in and out of hospitals my entire life.  I thank God daily for the life I am leading and am thankful that babies born today with congenital hip dysplasia do NOT have to endure the spica casts and the life-long multiple surgeries. The non-profit International Hip Dysplasia Institute, (IHDI) could just be the answer to changing lives forever. Supported by the Git-R-Done Foundation and the Arnold Palmer Medical Center Foundation, in Orlando, Florida, the swaddling techniques, the Pavlik Harness, the support of the physicians in educating families gives us all hope for a better, healthier future.





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May 5, 2020 Ina’s Story

Ina’s Story

Hi, My name is Ina. I’m 44 years old and was diagnosed with left hip CHD at 9 years. I went thru several failed surgeries,...

Hi, My name is Ina. I’m 44 years old and was diagnosed with left hip CHD at 9 years. I went thru several failed surgeries, open reductions, hip osteotomy, arthrodesis (fuses the femoral to the acetabular-hip socket), traction, petrie, spica and body casts from the ages 9-12.

I was told that I would never be able to run, skate, ride a bike and that I would be in a wheelchair for the rest of my life. A 9 year old doesn’t “Really” comprehend what that means. What do you mean?…”I Can’t”! Watch Me! I did all of those things except run and only needed the wheelchair for recoup.

I have always had trouble with pain, discomfort & mobility all my life. It’s the norm and I just lived with it. Until, the spitting fire of pain over took my life and I new it was time for more surgeries. I had acetabular grafting, reconstruction and Left THR- Total Hip Replacement in Dec. of 09. I’m doing much better but it’s a matter of time before I have the other hip done and a replacement for the replacement. I still have pain, discomfort and mobility issues and it has taken me this long to Really get back on my feet. I can’t sit, stand or walk for very long, but at least my gait is better and I don’t have such a pronounced limp. I find that I traded one set of issues for another and the journey continues.

I have Osteopenia, Osteoarthritis, PseudoGout in my right knee-had surgery after my THR for removal of crystals built up, Bunions, Fibroids (I call her Phoebe-The Fibroid- because she is the size of a 5 month pregnancy. I’m not ready for another surgery I already had my left fallopian tube removed) Hyper-mobility,Migraines, Balance issues due to my left leg being much longer after my THR-( I have to wear a lift in my shoe). Just to name a few. I only write to share my experience and or similarities that we might have. To shed some light on the crazy journey that we are on. Not for anyone to feel sorry for me. I KNOW that I am Blessed Beyond Compare to have the life that I have.

I find that being patient and pampering myself, giving my body thanks every morning for being my vessel for enjoying life, and celebrating the little things makes all of this a little easier. We are part of the most Elite Club around with a very high initiation to join.

Wishing everyone a speedy recovery no matter where you are on your journey. Hip Hip Hooray to all of us for the COURAGE it takes to BE US.

I haven’t written in my blog in awhile…It just became a bit too painful to think about all things Hip. But, if you like to check it out go to

www.inamarieandherhip.blogspot.com

I am forever Grateful for this site. Thank You IHDI for being here for all of Us. ~Ina, One Hip Chick~





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May 5, 2020 Rita’s Story

Rita’s Story

I’ve always been very flexible. didn’t realize i was ‘hyper-flexible’ and that there was danger in over extending beyond the normal range of motion. I...

I’ve always been very flexible. didn’t realize i was ‘hyper-flexible’ and that there was danger in over extending beyond the normal range of motion. I thought you couldn’t be too stretched out, too flexible. Wrong. I’ve also always had crackable joints, knuckles, back, neck  etc. and hips. often I’d get this odd feeling that my hip wasn’t quite in it’s socket, so I’d stretch my legs out while standing and bend to one side until it ‘cracked’ and popped back in place.

I had NO idea that things were actually out of place and that this was a sign of problems to come.

I was first diagnosed with osteoarthritis in my early 30s. My doctor said that, while it was a normal part of aging, I was very young to be starting the degenerative process. I wasn’t an athlete, didn’t lift weights, nothing to indicate more than normal wear and tear. I didn’t think much about it. He didn’t offer and I didn’t ask what lay ahead for me, what I could expect to happen, and most importantly, what I could do to lessen the chances of serious problems. No stern warnings, no alarms, just a casual observation. How could I know what he meant? As is normal, since the pain was in my back, all he looked at was my back.

I am not 53. Since then I have had problems in almost every major joint–with fusions in my neck and back, shoulder and knee issues, and now my hip. Actually the hip started hurting in 2008 on the right side. it was then that I discovered that I had hip dysplasia. The doctor didn’t seem too fazed by it, didn’t make a fuss over it, and they told me it meant I was more likely to develop arthritis there, and that was it. Once again, he only looked at the hips, as if they weren’t connected to any other part of my body. I had a lot of pain and ultimately couldn’t walk very far. Tests showed I didn’t have bad arthritis there and didn’t seem like a candidate for surgery. They didn’t know why I was in so much pain. I had multiple MRIs, pain killers, and physical therapy out the wazoo.

A year later I could hardly walk and I went back to the doctor demanding answers. He happened to take a plain old xray at a particular angle and he said, “well I don’t know about your hip, but you should see a back specialist right away’. Almost immediately after seeing the back doctor I had a double fusion in my lower spine and my hip pain miraculously disappeared. Four years later and it’s all still just grand.

What does this have to do with hip dysplasia? Fast forward four years, and I find that my other hip hurts–in a different way, and I have all the tests and symptoms of, not only hip dysplasia, which I find out is more serious than my first doctor led me to believe, but also arthritis and a labral tear that will probably require surgery. I’m now walking with a limp a lot of the time.

What I wonder is whether, when I was in my 30s, diagnosed with an unusually early onset of osteoarthritis, it would have been a good idea to get a look at the rest of my joints, look at the whole body and see what was going on and what to do from that point forward to prevent the kind of joint by joint deterioration I’m seeing now. It’s very frustrating. Seems to be largely a failure of western medicine to look at the whole patient–hyperflexibility, sensitivity to pain, etc.–so we could develop a plan of action for me to stay as healthy as possible.

Hopefully my new hip doctor will take a more holistic approach. I hear great things about him and am looking forward to the next steps. I don’t want hip replacement, but from this website it sounds like it’s inevitable. Makes me wonder: could they have detected and corrected it when I was an infant or child?

Thank you for bringing attention to this problem.





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May 5, 2020 Linda Bleck

Linda Bleck

My story brings me to writing this post. It is imperative that awareness and early diagnosis of this condition becomes noticed to avoid my current...

My story brings me to writing this post. It is imperative that awareness and early diagnosis of this condition becomes noticed to avoid my current situation.

Let me begin by saying that I am a very positive, faithful, and try to be a humorous person. These are my greatest blessings. They give me immense strength.

I am almost 50 this year. I was born the 7th of 9 children in a northern US city Waukegan, IL. I grew up on a tree farm, my father was an architect and my mother was an illustrator for Hallmark. My whole life I was told how strong I was. I climbed out of my crib at 9 months, carried my newborn brother at the age of 2 and half, and became an athlete of some competitive success. I did it all playing tennis, badminton, raced bicycles, hiked, golfed, played volleyball, and ran until I couldn’t. At 12 I complained of knee pain after volleyball season. Mom brought me to a doctor he said there was nothing, so I carried on. At 13 the pediatrican noted I had bowed legs, but I wasn’t going to be a model ,right? ( and you will never wear that toupe correctly, I thought) In my early 20’s I began my career as an illustrator. I moved to NYC and had success. I grew my business. I met my husband there too. The next 20 years I sat working long hours and exercised in between. I became a pretty good golfer too, that was in the nuptials. I had my children in my early 30’s. It was after that I started to have real pain and back spasms, but I carried on with high level activity. I just though it was from over use and that was normal for a person who can’t sit still. I will remind you I was 7 of 9 kids.

So I am going to flash forward to my early 40’s. The pain was now pretty much a constant in my back, but I didn’t want to see a doctor because I might be labeled a pre-existing condition and my husband was just about to finish his residency and change jobs. ( He went back to school at 30 . It was his third career. A chemical engineer in sales, and to top it a masters in business from Northwestern, and yes I supported the family!) I took it upon myself to do some things to help. I lost weight and exercised everyday. In 2008, I couldn’t take it any longer I went for a MRI because the pain in my back was getting worse. It revealed very little. The doctor said I had weak core muscles and gave me some Meloxicam and sent me on my way.
My friend, a personal trainer, suggested she could help me. So I spent two years building my core. Sure I was getting stronger, but things that never hurt started to become problems. I had terrible pain in my feet. Once my foot became swollen and purple on a vacation from walking long distances. By the time I saw the doctor he said it had corrected and no need for any x-rays. He diagnosed me with metatarsalargia and gave me some foot pads. It was like walking on glass. I would also have occasional knee pain. By 2011 my right hip started to become a problem. I started yoga , but I couldn’t even get into simple poses. My hip was locked up. The straw that broke me was that I couldn’t walk anymore. I had terrible pain in my hip flexor and I could no longer walk. My good friend who was 13 years older had absolutely no pain and we were doing the same activity. I asked, “Do you have any pain?”, she answered “No”. “Something is really wrong with me”, I said.

In 2012 I asked for a PT consult. They sent me for 2 months treatment. The PT suspected something more than a torn muscle, but she was able to restore mobility to the hip. She urged me to seek an orthopedic consult if the pain returned. In March of 2012 it did. I had just completed redoing my basement. I trimmed out the entire room, I was building sets for my daughter’s theater group, and in the middle of a doing a children’s book. I had pain right in the joint. Yikes I am wearing myself out just writing this!

Finally in March of 2012 I had a correct diagnosis with a simple x-ray. “You have bi lateral dysplasia” the doctor told me. “What?” I responded. I was quite calm. I took it all in. He explained that eventually I would have the hip replaced. “Would this fix my back pain too?”, I asked. “Maybe and I hope”, he said. In the meantime he gave me a kenalog shot with cortisone and ordered an MRI. He called me back in May of 2012. “Well he said, your hip is gone.Bone on bone with arthritis.” They found cysts, tears in the labrum, subluxation of joint, and a tendon tear. “Now I did it!”, I thought to myself. He couldn’t believe I had gone this long with no diagnosis or pain. “You never were in a harness?, he asked. “Only to keep me from running away. True.” I replied. How about pain?, “Yes my whole life.” He told me all my hyper activity probably gave me many extra years. The labrum was three times normal thickness on both sides. “A monster”, he said. He said he would have me come back in August at the end of the summer and I could think about what I wanted to do for the next phase of treatment, which was a THA or cleaning out and repair, but THA was inevitable. The other hip would be probably in 5 years. Okay I’ll see you then. I walked out called my husband and started to cry, but I got it together.

My mother was very I’ll and I didn’t want to have it done. I was walking around bone on bone and just using Aleve for pain control. It didn’t keep me down I played golf all summer. I also kayaked on Lake Michigan, surfing the waves. I came to visit my mother often. No doctor really ever thought I was in pain or that bad, because I just kept moving forward.

I walked into that doctor’s office on Aug. 17th. That day I had a hole-in-one and two birdies on the other par 3s. I beat the club champ. I shot a 32 on the front nine of the golf course. A course record, and all with crappy hips and crappy back. I signed the waiver and on October 15th I would have a THA reconstruction and tendon repair. I told my doc of my golfing achievement. The doctor said, “Now you are making me feel bad.” He never really told me what was going to be realty. Maybe for the best. Four days later on August 21st my mother passed away. She told me she was afraid I’d be in a lot of pain. In September I completed my last work obligation. A video scribe for Abbott Labs.

On Oct 15th my life changed dramatically. I didn’t know what was to come. Man that replacement hurt! They loaded me with oxycodone and muscle relaxers. I had spasms that felt like a knife was being jabbed into my hip. I went to my daughter’s play 4 days after replacement too. Sitting in a wheelchair grinding my teeth. Sarah got the lead as a freshman. It was really unexpected and I wasn’t going to let this keep me down. Two weeks passed and things got better. They put me into PT right away. I spent the next three months in PT. They supported me physically and mentally. It was really rough and I was trying to raise two teens. Thank God I was an athletic person. I had a lot of other muscles to keep me going. I also had a strong mind and good sense of humor!

Now I am almost three months post op and my back is crazy in pain. I kept telling my PT and she would send notes to the doctor. But nobody seemed to be that concerned. He gave me another shot in my other hip, because pain was increasing on that side. It helped a bit. Shortly before Christmas I got up and my legs buckled I couldn’t walk. The pain in my back was excrutiating. I wheeled myself into the PT and I was crying. I NEVER cry.:)
The doctor ordered a pain management consult asap. They ordered an MRI and an epidural. Luckily there was a cancellation and I got in. “ I don’t think you’ll need surgery” the pain management doc said.

Three epidurals later I had some relief ,but when those babies wore out, ouch! Back to square one. It’s now April 2013 and I cannot function, I can’t get the muscles to work to get my new hip rehabbed. They ordered an EMT test to make sure. Yes indeed I have significant back problems. I have stenosis and degenerative disc disease. Yahoo! Tell me more. “If it walks like duck, talks, like a duck, it is a duck”, the hip surgeon said. “Quack, quack, get me to the spine doctor please!”, I said. The spine surgeon became the team quarterback at my request. A great surgeon Dr. S gave me a decompression and foraminectomy on May 14th.

I am now 8 months out from back surgery. I had an MRI of the other hip and it is stable, but plagued by tendonitis. My SI joint continues to have pain. They marked it moderate in the MRI report ,but you are kidding me right? Somedays it’s terribe pain. Lordy Lord! I see a wonderful PT a couple times a month. Today I exercise everyday strengthening and maintaining my core. I mix up my daily exercise routine with aqua walking, swimming, stationary biking. I have to be very cautious as too much causes tendonitis to flair. I am off all pain relievers. I take Celebrex 2x a day and Gabapentin. I rest a lot too and ice. The exercise keeps my mind sharp and my overall mental health stable.

I continue to be very positive and focused on healing. I know someday I will be functioning. I will never be the athlete I was, but I still have my blessings. My dear husband is a great guy. He is very patient. We have been married 24 years and I will tell you that the last two years have made our marriage rock solid. I told him today that I will require more maintenance this year as my crappy hip is limiting and he is to smile and just do what I ask. It’s a perfect marriage. ☺





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May 5, 2020 Lisa

Lisa

My name is lisa, I am a 30 year old veterinary nurse and I have two beautiful children, Jacob 18 months and Evie 5 years...

My name is lisa, I am a 30 year old veterinary nurse and I have two beautiful children, Jacob 18 months and Evie 5 years old.

I would like to start by giving you a quick insight into my journey with Hip dysplasia and my PAO surgery with Mr Marcus Bankes on the 14/01/2014

As a child I suffered with pain in my left hip, which did not improve with physiotherapy. I was eventually diagnosed with over tight tendons as I was also pigeon toed. At around 11 years old I underwent a psoas tendon release on my left hip followed by a tensor facalata release at age 15. Eventually with months of rehabilitation I learnt to walk again without the aid of crutches. Although I wasn’t pain free I was now mobile enough to pursue a career in veterinary nursing.

Over the years I suffered with a lot of pain in my left hip but I put this down to the previous surgeries.
In June 2013 I started to suffer with severe back pain and right groin pain, to the point I could hardly get out of bed in the morning and looking after my children was becoming difficult. I was referred to a spinal surgeon who requested x-rays of my pelvis and spine. He advised me I had very uncovered hips bilaterally (both sides) and that to compensate for this I also had a lordosis of my spine (inward curvature of the spine) which was putting pressure on
my facet joints. He treated my facet joints with steroid injections but advised me that he
couldn’t do anything more to help me until I had my hips treated.
In November 2013 following evaluation by a hip surgeon and diagnosis of bilateral hip
dysplasia. I was referred to see Mr Marcus Bankes as he felt I was an excellent candidate for
PAO surgery (Periacetabular osteotomy).

On the 22/11/13 I went to London to be evaluated by Mr Marcus Bankes, a leading PAO surgeon. Following MRI and CT scanning he confirmed the diagnosis of bilateral hip dysplasia but also diagnosed a right labral tear and hypo mobility with a score of 6. He felt this was why the pain in my right hip had significantly increased and my walking distance was now down to 15mins with severe pain. He advised that I was an excellent candidate for bilateral PAO surgery but advised me of the possible complications, so I could have all the information before making a decision. I decided to go ahead with the surgery and we booked for the right hip to be done on the 14/1/14.

Being an active mum with two young children I was extremely worried about how I was going to cope and I had been advised that I would require 6 weeks of constant support. I was lucky enough to have a very supportive husband and family and although my husband and I had separated a couple of months earlier he said he could take alternate weeks off to look after the children and I, if my mum could helping out on the other weeks. I also had some friends who were able to help out with school runs if we needed them too.

My plan over the following weeks before surgery was to lose some weight, although I wasn’t very over weight I felt It would be better for my health and recovery if I did. I also ordered a wheel chair and practiced with some crutches as I knew I wouldn’t be allowed to leave hospital until I could go up and down stairs safely. I started to take a multi vitamin containing iron and ate iron rich food such as broccoli and red meat, on the advice of my surgeon. This was because one of the complications with PAO surgery can be heavy bleeding and if I could build up my iron reserves, hopefully I wouldn’t require a blood transfusion post operatively.

I am now 4 weeks post pao and I have set up a face book page called My PAO Journey. The aim of my page is to give an insight into my recovery from pao surgery. I hope this will help and support other people trying to decide if surgery is right for them.
I am also trying to raise awareness of DDH. I feel that raising awareness of this condition and educating people on correct swaddling of babies, is vital in preventing years of unnecessary pain and surgeries that could easily be avoided. For people suffering with DDH due to hereditary conditions or for no known cause, it is very important that they realize that they are not alone and can talk to other people who have undergone major surgery, in the pursuit of a more active pain free life.





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May 5, 2020 Angela

Angela

As an infant in the early 80’s I was diagnosed with club foot and my parents were told I would need to wear a metal...

As an infant in the early 80’s I was diagnosed with club foot and my parents were told I would need to wear a metal brace for my feet for the first year of my life. My grandmother tells me that when I had to wear this metal brace every night I would always cry myself to sleep.

It wasn’t until i was three years old and wanted ice skates for my birthday that my parents realized this was something else. I was unable to stand on my ice skates. I couldn’t do it, no matter how hard I tried I was not able to stay up. My parents to me back to the doctor and I met with surgeons who recommended that I get surgery to correct misdiagnosed hip dysplasia.

So I had the surgery at age 4. There was traction and body casts, scars, and lots of ice cream from the good nurses at Children’s hospital.

The last time I had a visit with a surgeon regarding my hip was when I was 10 years old. I have ongoing discomfort and pain and the surgeon told me there was nothing that can be done. So I stopped complaining and deal with the pain in silence.

I have a scar that stretches from my upper hip to my groin. And as an adult in my early 30’s I still suffer from discomfort and pain, it is increasingly getting worse and sometimes I have difficulty walking. My hip will give out like it is not strong enough to hold me up.

You should know that my hip has never stopped me from being active though. Through perseverance I played sports in elementary and high school, I have been in kick boxing, as well as tai-kwan-do as an adult, and I am still healthy and active to this day. I think one day I may have to go for further surgery to deal with my hip issues. Is there anyone else out there with a similar story?





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May 5, 2020 Cat

Cat

I was born in 1983, and my legs were not frogged as normal babies usually are. They were out straight. The doctors told my mother,...

I was born in 1983, and my legs were not frogged as normal babies usually are. They were out straight. The doctors told my mother, Grandmother, Grandfather and Father that my hips were out of socket and that a pillow brace would help that. It helped my left hip pretty good, but with every growth spurt I had the right would come out the femoral head growing straight instead of an angle, and the socket they found out later was deformed badly. They did not officially call it displasia till I was about 2.
I remember being in braces, and having surgery every other summer. Those were the summers I dreaded most because I couldn’t go play with friends or swim in a pool. I tried my hardest to hide my displasia even from doctors and my family. They new better. From 2 months old to about a year old I had several closed reductions, after a year I had open reductions which then over the years turned into ostiotomies. My right leg after that was always an inch or more shorter than my left. My back grew to compensate and I ended up with Scoliosis. My second to last major surgery was called a salvage operation and was done in San Diego California by Dr Richard Santore. He warned that it was not a fix all operation. I was 18 when that was done. At the age of 24 I had a full hip replacement on the right side. While it has helped with my hip movement and prevent it from popping out, I have more pain and issues with my back and the already several damaged nerves on my right thigh. I do believe my pediatric surgeon Dr. Richard Shindel used some of my x-rays at conferences discussing the hip issue.. I Never knew there was a foundation like this one. All these years every one looked at me weird when I told them about my hip issue. “Thats only in big dogs.” No. I can prove it with saved pins and plates, photos, x-rays, and huge 3-ring binder full of medical records about it.





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May 5, 2020 Sarah

Sarah

I was born in 1977 with bilateral hip dysplasia, worse on my left side than on my right. I was diagnosed at about 2 weeks...

I was born in 1977 with bilateral hip dysplasia, worse on my left side than on my right. I was diagnosed at about 2 weeks of age. I spent 5 months as a baby in a spica cast and then 2 years in a brace. My parents were told that as I grow my hips would grow into the correct shape. When I was 8 years old my orthopedic surgeon retired. I did not see an orthopedist again until I was 12 when my mother noticed that I was limping.

The new pediatric orthopedic surgeon was horrified when he saw my x-rays. My left hip was completely deformed and had caused my left leg to be almost an inch shorter than my right leg. My right hip was only slighly misaligned. Based on the severity he did not recommend surgery be done at that time. He advised me to wear a lift in my left shoe and that I would probably need to have my hip replaced by the time I am 40.

Over the next 15 years the pain in my left leg got increasingly worse. By the time I was 26, I could not walk more than a block without severe pain. My entire body was tilted at an angle and I had very limited mobility in my left leg. I sent my x-ray around and was told that there is no corrective surgery for the situation and I would need to have the hip replaced. I found Dr. M, a sugeon who specializes in young adults and in ‘replacements of replacements’, which I will eventually need. I had a total hip replacement and had my left leg lengthened to be the same as my right leg. The surgery was the best thing I ever did. The pain in my leg was completely gone. Once I recovered, I was able to walk and run and bend my leg. I barely limped and even wore high heels, all things I had not done in years.

A year ago, my 3 year old daughter was diagnosed with the same thing – bilateral hip dysplasia. No one had picked it up as a baby since both hips were completetly dislocated. I noticed she was still waddling while she walked, took her to a doctor and got the diagnosis. After much research we ended up by Dr. S in a children’s hospital. In November, he did open reduction and osteotomy on her right hip and then 3 weeks later on her left. She spent 9 weeks in a spica cast and then 4 weeks in an Ilfeld brace. Since then she has been going for PT and is now walking. She still needs to strengthen her legs but it is wonderful to see her walk without waddling and with a straight back.

Over the last few months my right hip has been getting more and more painful. Last week I went back to Dr. M who told me that there is no cartilage left in my joint and I have pretty severe arthritis. This developed from years of a slightly misaligned joint and from years of not walking properly because of my left hip problems. He recommends replacing my right hip. I am only 36 years old and can’t imagine having 2 hip replacements. I do know the wonderful outcome of the surgery but I also know they don’t last forever. I am going to take my x-rays for another opinion and see if there is anything corrective I can do with this hip. Then I will have to come to a decision.

I was so happy to find this site and read the stories of so many adults who have been living with the same kind of pain I have lived with for years.





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May 5, 2020 Daniel

Daniel

I am a 35 year old male who was diagnosed with hip dysplasia around 5 years ago. The diagnosis was only made after I injured...

I am a 35 year old male who was diagnosed with hip dysplasia around 5 years ago. The diagnosis was only made after I injured the hip playing sport, which I initially assumed to be a muscle injury but did not clear up, and turned out to be a tear in the labrum where the cartilage had grown to compensate for the shallowness of my hip. Up until then I had led a normal life, with only minor pain when I walked long distances or exercised hard (which I put down to unfitness).

Initially I tried physiotherapy, which was not successful in alleviating discomfort, then surgery to clean up the tear to try to lift the symptoms. However the pain has continued to worsen and after further scans and consultation, the surgeon has recommended that I have PAO surgery (initially only on my symptomatic hip although both are dysplastic). He believes that due to my age and the fact the the surfaces of the labrum are not yet badly worn there is a good chance of success.

It has been interesting to read the stories of other patients on this website as I look for information to support my decision. I am terrified of major surgery and a long recovery period, especially as I have two very young children at home and will not be able to support my family while I recover (according to the surgeon, for 6-8 weeks I will have severely limited mobility). Currently my hip is a nuisance rather than debilitating, but the opinion of the doctors who have seen me is that it will only get worse with time until I need a full hip replacement.

I would love to hear stories of people who have been in similar positions to know whether it makes a real difference, or indeed people who have not had the surgery until it was too late, to know what the alternative is if I do not go through with it. Will I really get the benefit, given that I am not yet in severe discomfort? How much better will it be to have a PAO vs. a hip replacement? My mother has had both her hips replaced in her 60s and neither operation seemed anything like as major as the PAO… so as they say, is the juice worth the squeeze?

Any thoughts and opinions would be most welcome, and of course if I do go through with it I will keep my story up to date…





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May 5, 2020 Juliet

Juliet

I’m 41, with recent onset congenital bilateral hip dysplasia. This is what happened: On June 30, 2010, I was a leasing agent with a property...

I’m 41, with recent onset congenital bilateral hip dysplasia. This is what happened:

On June 30, 2010, I was a leasing agent with a property management company and we were having a busy day doing move-ins and move-outs. Around 6:00 PM I developed a severe pain in my right hip, to the point where I was limping and dragging my right leg behind me. It was a hot day; and I was wearing sandals, to which my boss and I attributed the right hip pain. I wore shoes with better support after and that seemed to be that. Everything was fine until…

In February and March 2011, I had a different job working as an office administrator. I took the bus to work and while the walk to the bus was okay, the walk from the bus into work (8 blocks) was painful and most of the time I limped. After sitting at my desk for an hour or so, the pain disappeared. It was only in the mornings, and by the end of March had stopped. Everything was fine until…

In Spring 2012, my routine gardening tasks became excruciatingly painful on my right hip/knee/leg and often I couldn’t walk afterwards. Around this time, regular walking started including a stabbing pain inside my right hip joint. There was no rhyme or reason. Some days it was every 100 steps, some days every 50, other days every 3 or 4. Always when I let my guard down and forgot about it. I made an appointment with my GP that May.

Another thing that used to happen to me is I would fall down, usually one or twice a year, and skin my knees like you do when you are a kid. Yes I was sober 😉 I always thought I had tripped, or stepped too far on the outer edge of my foot, wasn’t paying attention, etc. The last time I fell was in August 2012.

My GP was reluctant at first, because of course when I went to see her I wasn’t limping. After some x-rays that showed nothing, I kept insisting the pain was in the joint and she agreed to send me to see a orthopedic surgeon, and schedule me for an MRI in January 2013. I went for the MRI, but missed getting a fluoroscopy injection, so I needed another MRI with the injection, which took place in June 2013.

The first surgeon I saw diagnosed right hip dysplasia at the end of June 2013, and said the left hip was fine. I cried. I didn’t ask all the questions I should have, I was unhappy about living with the pain. Imagine if someone told you you were going to be stabbed in the hip joint several times today, but you have no idea when – yuck – it made physical movement unappealing. Once I turned slightly to the right, and it hurt so much I couldn’t breathe, I saw white stars popping in front of my vision. The other time that happened to me (couldn’t breathe, white stars) was when I happened to be standing next to the fire alarm in my building years ago, when it was being tested. How could anyone not be sad about this? The surgeon took my reaction very personally, and said, unprofessionally, “Well, what do you want me to do about it? Perform a surgery and make it all better?” I cried harder. But yes, I did kind of want that 🙂 I didn’t know how the condition is monitored over time, how is pain managed, should I take supplements like glucosamine sulfate?

In July 2013, there were two days in a row that I couldn’t put weight on my right hip/leg. Enough was enough. I went and bought a cane. And, then, with the cane, I went through a grieving process with all my friends and family that it was unfair, I was so young, reminding others of their own mortality, etc. It was more for them than me. Their sad faces were hard to see. They didn’t know how to be around me. I got treated like a frail grandma. It’s just a cane, I’m not going to die of this. The cane has greatly, greatly lessened the pain over time in my right hip. I love my cane! I can go so much faster, too! Tripping is a hazard at first, and if you are using a cane you will do everything one-handed.

In January 2014 my left hip started hurting in the same way the right one did. I knew my left hip was the same as the right, even though the surgeon had said it wasn’t. I just KNEW. I made it to work and then was sent home because I was a wreck. My co-worker wanted to take me to the hospital. My other co-worker told me I had ‘shock spots’ around my eyes. I went home and cried on and off for the rest of the day.

After asking repeatedly for 5 months for my GP to refer me to another surgeon for a second opinion (she thought the first guy was fine, but I wanted to be sure) I finally saw him a few days ago. He confirmed the bilateral hip dysplasia. He did something the first surgeon failed to do: offer me hope.

With the right support, I can put the cane in the closet for a few more years AND get around relatively pain-free. I will need a hip replacement but not for around 8 years. He gave me some pain medication I am wary of, as my partner took them and said they are hard on the body, so I want more information first. I will have a referral to the Arthritis Society in my city and I can speak to them about medication and side effects. Other ways to live with pain and support joint health the best I can. Platelet Rich Plasma was also brought up, but it tends to be something for sports injuries. And possibly the acetabulum can be rotated so the femoral ball fits better. I am very glad I got a second opinion.

This is the hand I was dealt, so it is the one I have to play. I’m still in the grieving process. I do my best to be brave. I had free and easy mobility until two years ago. My physical activities have changed. I watch my friend Paula running along the giant driftwood logs that pile up on the beach with something more than envy: I used to be able to do that! We did that together! It’s been coming my whole life; biology is destiny in this case.

I don’t have a lot of people to talk to about this, pretty much all anyone wants to hear is that it is getting better. But I don’t know that it will get better before it gets worse. Thank you for reading this, and to this forum for allowing me to share my story.





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May 5, 2020 Angela

Angela

I am a 37 year old female that was diagnosed with congenital hip dysplasia at 2 days old. I was coasted at 2 weeks old...

I am a 37 year old female that was diagnosed with congenital hip dysplasia at 2 days old. I was coasted at 2 weeks old for 6 months. My mom said my feet grew out the end of my cast. I was then in a brace for another six months. I learned to walk around a year and a half and my parents were told all would be fine…

My mom began to notice strange things about me. I always wore out the toe of my left shoe before the heal. My pants were always too long on the left side. And then she saw me from the back that my rear end was uneven. The pediatrician told her she was crazy! My parents finally found an orthopedic surgeon in Chicago. They took me and he knew right away there was a big problem. I had a four inch difference in the length of my femurs! I had suffered an a vascular necrosis of the femoral head.

I had two double upper femoral osteotomies, removal of plates and screws, exploratory hip arthroscopy, and eventually removal of my right femoral growth plate hoping my femurs would be even. I wound up with a 1inch difference and the dr said that was as good as it was gonna get. I was told no running, no jumping, no sports for the rest of my life. I was also told that I would have aches and pains but that was part of the territory.

I went on to live a relatively normal life. I became a pediatric ICU nurse, got married, had three kids. I always knew when it was gonna rain or snow. I was my families personal weather barometer… About six months ago the pain in my left hip got really bad. I could barely walk. No pain meds worked. On a good day it was like a tooth ache and on bad days it was like a raging fire in my hip. I lost range of motion. My kids had to help me with my shoes.

I finally went to a surgeon and after a lot of X-rays, an MRI, and a failed cortisone injection on April 9,2014 I had a total hip replacement with a cone implant. My hip was so abnormally shaped and distorted the surgery took 4 hours instead of one and a half. They lengthened my leg and so for the first time in my life my legs are even and my feet touch the floor at the same time when I sit. When I woke up in recovery I had NO pain in my hip!

I am in for a long recovery… Being off balance my whole life everything on my left side needs to be straightened and realigned. I know this implant won’t last forever, but I’m so excited to see where the new hip takes me.

Thank you for taking time to read my story!





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May 5, 2020 Leah

Leah

I was diagnosed with Congenital Hip Dysplasia around 1 year of age in 1982. A friend of our family had noticed a difference in the...

I was diagnosed with Congenital Hip Dysplasia around 1 year of age in 1982. A friend of our family had noticed a difference in the length of my legs. I never really crawled. I am told that I pretty much skipped crawling (other than scooting). I was always told that this was a hereditary condition. My Aunt was diagnosed and always walked with a limp. She went on to have 4 children. 2 of her children also had this condition.

At the age of 1, I was put into what they called “traction”. They tried to reset my leg with some type of hanging device. There was a waiting period to see if that would correct the issue. That did not work. At the age of 4 I had another surgery where they tried to correct it by operating on my femur bone. I have a scar about 10 inches down the side of my leg from it. After that surgery was complete, I was put in a body case for about 6 weeks. I proceeded to go through physical therapy and learn to walk again. During my post-operational exams, my doctor concluded that the surgery did not work. They tried the same surgery again when I was 6 years old. I went through the same recovery process. I had another body cast for 6 weeks along with physical therapy. During my post-operational exams, my doctor concluded again that the surgery did not work.

At the age of 8 years old, my doctor performed a pelvic osteotomy on my hip. Again, I was in another body cast for 6 weeks. Post-surgery it was back to physical therapy and learning to walk again. (It left an additional scar about 10 inches long down the side of my body.) However; this time, during my post-operational exams, my doctor saw a stable improvement in my hip.
I am now 33 years old. I live a very normal and active lifestyle. That is the key element to this issue. You must stay active and keep that hip mobile. I do a lot of mobility exercises. I know my limitations. Running and jogging aren’t really good for me. However; I am a member of a Crossfit gym. If anyone understands Crossfit they know that it is a pretty intense work out. I modify my workouts to support/protect my hip. Keeping one’s weight down is also a key to this as well. As a 33 year old woman, I have to watch my weight. I can feel my hip mobility decrease when I put on added weight. It aches more frequently if I am not active. I’m trying to keep myself in the best shape possible because I want to try to avoid a hip replacement for as long as I can. Maybe I’ll never have to have one if I keep my hip healthy and mobile.

I have a lot of experience and information regarding my case. This is a long drawn out experience summarized. I have a ton of pictures of being in a body cast. I would love to share any information that could be helpful to someone else. This was difficult on my parents when I was a child. I can’t imagine what some of these parents are going through. There isn’t a lot of data out there that I’ve found on post-surgery osteotomy results. I want to learn more about what (if anything) I can do to prevent myself from having a total hip replacement. It still feels like a “wait and see” game at times. If I can be of any assistance to anyone, please feel free to email me or comment on this story.





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May 5, 2020 Valorie

Valorie

I was born May 22, 1974 in Niles, Michigan. My story began that day. I was born with no bi lateral dysplastic hips (no sockets)....

I was born May 22, 1974 in Niles, Michigan. My story began that day. I was born with no bi lateral dysplastic hips (no sockets). It was not discovered until I was 14 months old, when I began to walk unsuccessfully. I fell sideways which my parents thought quite odd. They say me on the washing machine and sat me down and discovered one leg was drastically longer than the other.

After a visit to the doctors my parents were informed that the top of my femoral bone was floating in my body cavity on both sides. Doctors explained that it was extremely painful, but I knew nothing but the pain so it was normal. This is why it took so long for my parents to find out. My doctor suggested a procedure to my parents so they put my legs in traction and pulled them to where they should have been then put a cast from my waist down to see if they would grow. The hip sockets did grow but they were shape and still had dysplasia.

It was said I would probably not walk but I defied the odds and was fine up till I was 23. I had muscle weakness in my left leg and a popping feeling when I tried to use my leg without assistance. I then began seeing doctor after doctor getting no answers. It seems most doctors are not familiar with this condition and how to properly treat it.
After 2 knee scopes and foot surgery (hip dysplasia caused damage), a doctor found a labral tear in the right hip and decided to replace it. It was extremely painful and had to be revised a second time. It took almost a year to get better. I noticed that my hip slipped when I walked after the surgery and the doctor said it was scar tissue. 5 years later at age 39 I found out that it wasn’t scar tissue but that the hip was placed incorrectly.

I am now 40 and currently awaiting a doctor to help me. I walk with crutches and I am in extreme pain everyday. I now have another labral tear that is getting progressively worse. It has destroyed my left foot and left knee and is causing damage to my sciatic nerve. I have walked this long when I was told I would never do it. I will get through this and hope to inspire others to keep faith and perseverance and life will get better. I hope and pray that my story is read by someone who may answer my prayers.





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May 5, 2020 Donna

Donna

Hi,I was born with hip dysplasia in my right hip, which wasn’t picked up until i started walking at 14 months old. I had surgery...

Hi,
I was born with hip dysplasia in my right hip, which wasn’t picked up until i started walking at 14 months old. I had surgery at 16 months old and had the metal work taken out 12 months later.

Growing up i took part in most sports activities at school, but i have a huge scar down the side of my right leg which i was always conscious about which made me hate wearing shorts. My pain started at the age of 17 when i was carrying my first child. I thought that it was the weight of the pregnancy that was causing the pain.

I went on to have another child at the age of 19 and by this point the pain was unbearable. After i had my baby i went to see a doctor and was sent for an x-ray. The x-ray showed that my hip joint had worn on the inside of the socket and the roof of the hip was shallow. I suffered for another 2 years in excruciating pain, taking a cocktail of pain killers and anti-inflammatory tablets and using a walking stick. This was one of the lowest points in my life.

I had 2 young children and struggled on a daily basis with simple chores and activities. Eventually my consultant decided that a PAO would be the best option and would hopefully give me between 10-20 years before i would need a total hip replacement. I had the surgery in 2000 when i was 21 years old. The surgery took 6 hours and i was in hospital for 10 days.

I don’t remember much of the first couple of days as they gave me morphine for the pain and i was completely out of it. I was told by my consultant that i would take between 12-18 months to fully recover from the surgery. However my recovery was a lot quicker than expected.

The first 3 months i was on crutches and could not bare any weight on my hip. After that i gradually started to put weight on my hip and went down to one crutch. Within 9 months i was fully recovered and totally pain free. The PAO surgery was a success for me and it has given me 12 years without any pain. I am now 35 and i started with pain again around 2 years ago. It has got gradually worse and i have also started getting pain in my knee on the same leg.

I have been back to see a consultant a few weeks ago. He sent me for an arthrogram on my hip which was not a pleasant experience but i got a steroid injection at the same time to help my pain. The injection worked well for a few days and has taken the edge off the pain in my hip but it has not completely gone. I have also started wearing a raise in my shoe as my leg is 3cm shorter than the other.

I am now having a lot of pain and burning sensation in my knee and i am waiting for an appointment for a scan. I think the years of limping has affected my knee, i’m hoping that there will be no serious damage. Has anyone else had problems with there knee as well as their hip?





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May 5, 2020 Hope

Hope

I was born in 1990 in the North-East of England and my bilateral hip dysplasia was recognised a couple of days after I was born....

I was born in 1990 in the North-East of England and my bilateral hip dysplasia was recognised a couple of days after I was born. My parents were initially told to put me in large nappies and I was later put into a spica plaster.
At the same time I was struggling with immunity problems and was fed through an Ng tube. I spent most of the first few months of my life in the Freeman Hospital in spica casts or in traction.
The traction meant that most of my families early photos are of me with my legs bandaged up in the air with weights to try and corrext the position of my hips.
Xrays showed that my hip sockets were very shallow resulting in my hips easily slipping out of the sockets and a rotation on my femurs.
I had multiple femoral osteotomies and pelvic osteotomies to try and create less shallow sockets and correct the joint.
This would always seem to work and although I missed a great deal of school I still had a normal childhood making friends and doing pretty much whatever I wanted to do as long as my trusty wheelie walker frame could come with me.

This included sledging with my grandparents whilst in a hip spica.
I have fond memories of my splints which to make them more tolerable were nicknamed Lucy and Larry because of the sheepskin lining on the supports. I also named my zimmer frames Henry as they used to go everywhere with me and it made them more fun.

I continued to have surgeries at freeman everytime I had a growth spurt as my hips would begin to dislocate and wear each time I grew.
At age 5 my consultant orthopaedic surgeon retired and due the severity of my condition I was referred to Great Ormond Street Hospital in London where I continued to have regular surgery on my hips until age 13.

Whilst having surgery I was always up beat even when it was really painful or I was really poorly due to infection or surgical complications.
I have great memories of my spica casts which were always in a variety of colours including paint splodge.
I even had fun adapting to life when I had my spicas on for example to get round my parents house I used to lie on my belly on a skateboard and pull my self around I even made a cake lying on the floor. I also scared the life out of my physio and parents when I learned how to slide head first down the stairs in my cast.

I also learned to skateboard, tried snowboarding, rock climbed, scuba diving, snorkeling, rollerskating and most sports.
All of which I did either between surgeries and some even when I was recovering.

It wasn’t always plain sailing though it was hard when you know your friends ar school are able to run around and play contact sports and your else where doing exercises with your physio. I also had a lot of help with school as I missed a lot of classes due to surgery and recovery time at home. Although I never minded skipping maths to do hydro therapy.
I was also bullied due to my walking and my walking frames. I also used a special adapted chair at school to support my hips and bsck and make sitting more comfortable which did draw attention to my condition. However being the determined person I am although it hurt I kept going.

At 13 after having osteotomies and pelvic reconstructions and illiac crest grafts to my hip sockets my hips improved dramatically. I had much less pain my walking got much better (phew) and on xrays my hips actually looked like normal hips.

It was a great relief to both myself and my family to be told that from that point I wouldn’t need surgery for quite a while. At that point the consultant felt I wouldn’t require surgery till my late 20s or 30s.

I had a number of years where I was able to go to school and lead a normal life taking pain killers occasionally and having regular check ups with my physio.

At 17 I was discharged from the care of GOSH and sent to an young adult consultant at Freeman again.
Towards the end of 2007 I began to get increasing pain in my right hip.
Xrays showed I had osteoarthritis developing in my right hip and the space between my femoral head and socket was decreasing.
I was given a more intensive exercise routine to try and build up the strength in my hip to help with the arthritis and a different course of pain relief.
That did help my hip in the short term and I continued my final year of school. I attended my leavers prom in june of 2008 and had been having more discomfort at that time. After the prom I rested and the pain got worse to the point I received crutches and had to spend time using my wheelchair. I felt down as I only used my wheelchair for long distances such as going on holiday to theme parks in America as I can’t walk very far without getting muscle fatigue.

I spent time in hospital on morphine, having hydrotherapy for 6 months and having traction to try and relieve the pressure on my joint.

This did not improve my hip, and after discussing my case with a consultant specialised in DDH patients we agreed that surgery to replace the joint was the best option.

At this point I was 18 years old and no one wanted to give me a totsl hip replacement as they felt I was too young or my hip was too complicated to operate on.
I was referred to the Royal Orthopaedic Hospital in Birmingham where I met with a specialist in young people who require hip replacements.
We discussed my case and he felt the best option was a hip resurfacing. As this would last 25 years and would preserve bone in my femur in case of a future revison with a total hip prosthesis.
Where the stems go much deeper into the femur rather than just replacing the ball and socket.

Due to the external rotation on my femur I also required a femoral osteotomy as the surgeon could not get the joint to stay in place with the rotation.

I had my surgery in November 2008. Due to a prolonged surgery and blood loss I spent a night in HDU with a dodgy epidural my left leg was lovely and numb and my right operative leg was in agony more tissue than joint.
My first words on moving my hip for the first time was its so smooth the joint moved so well like a well oiled joint. I was so so happy.

Despite the complications I had with blood loss I still got up out of bed on the first post operative day and walked on my hip. After two weeks I returned home and continued my recovery.
I received hydrotherapy at Freeman and my hip gradually got stronger. I could walk and run better and was able to drive and get about on my own.

Before my surgery I had applied to go to university to become an operating department practitioner. This is a nurse working in the operating theatre. I felt it was the perfect job where I was able to care for patients in the kind empathetic way the staff who looked after me had throughout all my surgery.

I delayed this till 2009 and started the course in September. I had surgery in December 2009 to remove the osteotomy plate but was back doing my training in theatre in the January.
I have never let my condition stop me doing what I want to do.

I got my diploma with commendations in August 2011 and now work with anaesthetists assisting them in looking after patients having Anaesthetics.

At 24 I am able to look back at the surgeries and experiences I have had with pride and happiness as I would not be the person I am today if I had not had those experiences.
I also have a great love and respect for my parents who have been there with me and given me the love and support to stay positive, focused and determined to keep going no matter what.

My advice to young people growing up with DDH is never let it stop you, even when it’s really painful and doesn’t look like you can get a quick fix keep persevering. You can do whatever you want to do if you put your mind to it. Also when it comes to bullies, I can honestly say ignore them as one day you will look at what they become and they will pale in comparison to what you can achieve.

My future plans are to get married to the greatest guy ever in October 2014 and keep these hips going for as long as I can.





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May 5, 2020 KC

KC

Hi, I’m KC and I’m 35. My mom told me that my hips were dislocated when I was born. I was treated for hip dysplasia...

Hi, I’m KC and I’m 35. My mom told me that my hips were dislocated when I was born. I was treated for hip dysplasia when I was 3 months. The treatment seemed to work, however, I always felt that my hips would slip in and out of socket.

I didn’t have much time to worry too much about my hips, because I was diagnosed with Scoliosis at 11 and had surgery for it when I was 12. I also had really loose knee caps and had to wear knee braces, in addition to having flat feet and having to wear custom orthotics in my shoes. Despite all of that, I played basketball in middle and high school. I also went to the police academy and was a cop for 5 years.

It wasn’t until I was 25 or 26 that I started having pain in my left hip. The sports specialist said that I had bursitis and prescribed ibuprofen and exercises. It wasn’t too long before I was able to go back to the gym to run and lift weights.

I had some pain in my hips when I was pregnant in 08 and 2010, but I assumed it was normal. It wasn’t until November & December 2013 that I couldn’t ignore the pain in my left hip anymore. I went to see a Rheumatologist for fibromyalgia that I was diagnosed with in 2012 and I told him about the hip pain. After seeing the X-ray he immediately referred me to an ortho surgeon. Before seeing the OS, my right hip started to hurt too. I ended up having to borrow one of my mom’s canes.

The OS confirmed bilateral hip displasia with mild bilateral osteoarthritis. If this is mild arthritis, I’m afraid to find out what major arthritis feels like! The OS told me to work on losing weight Without Exercising, but with cutting carbs. Keep in mind, I didn’t start gaining weight until I couldn’t exercise because of the pain. He Did Not prescribe meds, cortisone shots, or physical therapy. He just told me to take some supplements and lose weight! In the mean time, my pain is getting worse and I’ve had to buy my own cane to walk with daily. I went to my GP for a physical and told her about the pain. She did order PT and told me to increase my fibromyalgia meds. Increasing the meds did help a bit. I’m going to my second appointment with the PT today.

Having so many health issues at such a young age, even though I’ve always been active, really had me thinking that this can not be a coicidence. Through research, I think I may have hypermobility syndrome. All of my diagnosed issues fit perfectly. Has anyone been diagnosed with hip dysplasia and hypermobility syndrome? I’m planning on going to a new OS next month and I will definitely bring up my theory of having hypermobility. I’ll keep you guys in the loop as to what happens.

Like many of you, I am definitely going through a grieving process. Cardio was my stress reliever, now I don’t know what to do. The looks that people give me when they see me walking with a cane is so depressing. I want to be able to run and play with my four year old. Instead, he’s always running to my side when I cring in pain.

I am glad that I found this site and know that I’m definitely not alone in this struggle. I welcome any comments or suggestions. Thanks for listening to my rambling! 🙂





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May 5, 2020 Tom

Tom

Hi, I’m Tom (25)I was diagnosed with hip dysplasia last February and have been struggling to come to terms with it ever since. My left...

Hi, I’m Tom (25)
I was diagnosed with hip dysplasia last February and have been struggling to come to terms with it ever since. My left hip is deformed and my right hip is very shallow resulting in early wear and tear, it feels like there is very little cartilage left. I try hard to live a normal life as im an outgoing person, I have cut down a LOT on running and playin football. I Stretch most mornings, also swim and cycle 2/3 times a week but it’s not the same. I also go to the gym a couple of times a week and still find it hard to keep my leg muscles and joints strong and healthy. I had to stop working in construction, it was causing to much pain. I have been offered work but had to turn it down as it would put too much stress on my hips, its hard to find a suitable job because of this. Doctors say they want to preserve it until it gets to a certain stage, I’ve been questioning their beliefs, would it not make sense to operate and let me get on with life ?, In my opinion 25 years old is too young to be living a limited lifestyle.

Does anybody have any thoughts or advice?, Please…It Would Be Much Appreciated…..Thanks !!!





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May 5, 2020 Allison

Allison

I have written out my story a few times for different purposes, and each time I change things around a bit, according to the purpose/audience....

I have written out my story a few times for different purposes, and each time I change things around a bit, according to the purpose/audience. I include details here that may not seem relevant for a site dedicated to hip dysplasia for a few reasons. One, I want to show that my story is not typical for someone with hip dysplasia. Two, I’m very curious to know if there is anyone else out there with similar problems. Many of my doctors have thought my problems are probably all related somehow, but no one knows how. I jokingly say that I should add “confusing doctors” to my list of hobbies. Three, I don’t feel like I can share my story fully without these details, and finally and most importantly, I want to give hope to those who may have a similar story to mine; to those who might feel hopeless at times, to show that you can overcome these things.

While I was not diagnosed with hip dysplasia from birth (though they did check) I had many other problems when I was born, or shortly thereafter. When I was a few weeks old, I stopped eating, and had to be tube fed for awhile. No one knows what caused this, as all the typical reasons were ruled out. I did finally start eating on my own again. I was also very far behind on my gross motor skills, and did not walk until I was about 2 ½. My fine motor skills were also behind. My parents were told that because I was so far behind physically, that I would likely have cognitive delays also. I do not. In elementary school, I had an IEP (Individualized Education Plan) for physical reasons, and I was also in the gifted education program. I graduated from high school with a 4.1 GPA, and graduated college summa cum laude.

When I was five, I had eye muscle surgery. About that same time, I was also placed on growth hormone. I did not have growth hormone deficiency, but they could find no reason for my short stature (I am 4’10”, rounded up, as an adult now) and I was part of a research group to determine if growth hormone therapy was effective for those not diagnosed with this deficiency.

When I was nine, I was diagnosed with bilateral hip dysplasia, and they discovered this while looking for something unrelated. I never had any pain. Though I did walk with an altered gait, they did not think this was due to the hip dysplasia, and my parents were told surgery would not fix my gait.

On January 5, 1993, I had bilateral Pemberton osteotomies. I had the privilege of being under the care of Dr. Perry Schoenecker, who is on the Medical Advisory Board for the International Hip Dysplasia Institute (as of October 2014), which is how I discovered this site. As my dad tells it, A doctor in Chicago told Dr. Schoenecker he would not be able to perform the surgery, but the surgery was a complete success.

For the next six weeks, I was in a spica cast. Mine went from my ankles, up both legs, to the bottom of my rib cage, and both legs were nearly straight, and in a V shape. After the initial four weeks, under general anesthesia, the top half of the cast was removed, and was then secured back on with ace bandages. I don’t remember the details, but I believe this was so physical therapy could begin. I was in a brace after that, though I don’t remember how long I was in the brace.

I remember being out of school the whole time, and home-bound education was arranged. I actually liked this part, because I was ahead academically and could complete the assignments at my own speed. When I returned to school. I used a wheelchair, though I could walk short distances with a walker. Eventually, I was walking without any assistive devices, but, as was predicted, I still walked with an altered gait. I also had “serial casting” for tight heel cords at some point after the hip surgery, and I was diagnosed with osteoporosis at age 18.

I must pause here a bit to say that I cannot fully share my story without sharing my Christian faith. Throughout my life, God has spoken to me through music, and He gave me a special song, “Cares Chorus” to help me get through my hip surgery. It was on a “Psalty the Singing Song Book” tape that I had been listening to for years, but it took on special meaning during my ordeal with the surgery. The song is based on I Peter 5:7, which is the verse I quoted at the beginning. I have seen God work in my life in so many ways.

While I wish I could say my hip story ends here, it does not. In January of 2010, I started having pain in my left hip. The pain started out minor, and I tried to ignore it. Due to my earlier problems, I wanted to pretend it wasn’t happening. It soon developed to the point where I couldn’t ignore it. On May 3, 2011, at age 27, I was diagnosed with severe arthritis of the left hip. I was told that this was not uncommon for people who had the surgery I did at age nine. However, due to my many medical problems, including the altered gait that was not fixed with the surgery or serial casing, no one knows for sure why I developed osteoarthritis so early. I do not want anyone thinking that this is in the future for their child (or them) due to my experience. I likely have an undiagnosed congenital condition that ties all of my various problems together, but no one knows for sure. I was always one or two criterion away from being officially diagnosed with any specific condition. I have joked that I could be on “Mystery Diagnosis,” save for two things. One, my problems are not dramatic enough, and two, I don’t have a diagnosis.

After I was diagnosed with severe osteoarthritis, the pain continued to increase. While I did not want to have hip replacement surgery as such a young age, I knew it would be in my future. I was told that “I’d know” when it was time for surgery. I was told the pain would get to be too bad. For me, though, the decision had more to do with the mental side of things, rather than physical pain. While I did have pain, and I did have cortisone injections, which helped, I was not constantly taking pain medications. For me, the decision came down to a few things. I was tired of feeling like a tortoise amongst the hares when I walked. I was tired of not trying on shoes in stores, because I was afraid I wouldn’t be able to tie my shoe again. I had to quit working in the church nursery. I was tired of thinking about the surgery constantly, knowing it was looming at some point in the future. It was time. Pain wise, I could have endured. But mentally, I knew it was time. Looking back now, I’m go glad I made the decision when I did.

On February 13, 2013, at age 29, I had left hip replacement surgery. Once again, I had privilege of being under the care of one of the members of the Medical Advisory Board for the International Hip Dysplasia Institute (as of October 2014), John Clohisy, MD. My recovery was nothing short of remarkable, with absolutely no setbacks. Yes, there were some difficult nights, but the pain was better almost instantly after surgery. After leaving the hospital, I took a non-narcotic pain medication for a couple of weeks, but it was mostly to help me fall asleep. Within 8 weeks, I was walking unassisted and cleared to return to work, and all precautions/limitations were dropped at 12 weeks. Though I was never one for walking, I had always had this dream of completing (not competing, exactly) in a 5K. The hip replacement surgery was the motivation I needed to actually start to train, and in April 2014, one year and two months after my surgery, I completed the Color Run 5K. I may have walked the entire thing, and it may have taken me over an hour, but I did it.

With the hip replacement surgery, God once again brought the song “Cares Chorus” to mind, and he also comforted me with Laura Story’s song “Blessings.” I cannot end this without going back to my faith in God, who has been my Rock throughout my life. God can bring about blessing through my difficult circumstances. I may never fully see those blessings here on earth, though God has allowed me to see a glimpse of some of those blessings. The same God who knew then, and knows now, all the intricate parts of my body, the same God who knows exactly why I had those various medical problems, is the Lord of my life. I don’t know what God has in store for me in the future but I do know one thing. My God is a great God. No matter what, I know He’s in control, and will give me the strength I need to step through life as He has each moment in my past. The same God who made the universe cares about me, and can bring blessings from trials.

***********

“Cares Chorus,” Kelly Willard, Copyright 1978, Maranatha Praise, Inc.

“Blessings,” Laura Story, Copyright 2011, New Spring, a division of Brentwood-Bensor Music Publishing





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May 5, 2020 Heather

Heather

Hi, I’m Heather and I started having hip pain just after my 16th birthday. It started after I jumped down a water slide, in February...

Hi, I’m Heather and I started having hip pain just after my 16th birthday. It started after I jumped down a water slide, in February 2011, and felt a pop in my hip. I couldn’t lift my leg more than 6 inches off the ground. I thought that this was a muscle strain or tear so I took it easy that week in both dance and track. After two weeks everything seemed better, although running was still painful. During the summer, I competed in my regular swim team meets with no pain. In the fall, I was back to cheerleading and dancing with almost no pain, but then in November my hip pain started exponentially increasing. I went to a local town doctor who”confirmed” my injury as a muscle tear. I was told to take a 6 week break from all activities. The pain just got worse walking, sitting, and any activity put me in more pain. From there I got x-rays, an MRI, and a CT scan. After being referred to 6 more doctors with varying ranges of ideas on my hip, I finally was referred to Dr. Sierra at the Mayo clinic in Rochester, MN.

Dr. Sierra requested another MRI and CT scan with their higher quality machines. These led him to find that I had torn my labrum in my right hip multiple times. He also diagnosed me with mild to severe hip displasia. He gave me the option to get the arthroscopic surgery to fix the tears or to get the PAO. I chose to start with the arthroscopic hip surgery in the hopes that the pain would be gone when the labrum had healed.

So in the summer after I turned 17 I received my first surgery. I was out of the hospital the same day. I was on crutches for 6 weeks and then never ending physical therapy, because I felt a new pain. The labrum had healed, but the stress on my joint had become more prominent. I went back for my one year check up, and the doctor knew that I would need the PAO.

So I geared up for my second surgery. The surgery took about 3 hours and I was in the hospital for 5 days. This was an extra two days compared to the typical teen patient. This was caused by too much medication. For the surgery I received an epidual for the pain, but not as a shot but a continuous stream of the medication into the spinal area for 3 days. The doctor knew that the dose was much too high when on the second day I still couldn’t even wiggle my toes. The epidural was turned off, but it took me longer to recover than normal because of this.

Post-op is difficult when the joint is restricted to less than 90 degrees. This means for the first couple weeks I needed help sitting down, getting out of bed, putting on shoes, picking things up, not to mention trying to put on pants. This all got better after about 3 weeks. I went to physical therapy for 5 months during my recovery, I regained my balance and muscle strength, but I never progressed to high impact activities without a medium amount of pain. So being my first semester of college I started walking more and doing yoga.

At this point my pain was mostly nonexistent, as long as I avoided my favorites activities of dancing and running. So at my PAO 1 year follow up the doctor checked my x-rays carefully. He discovered that my hip had only grown back together at two of the three cuts made. This has a less than10% chance of happening, but is a known risk of the surgery. Dr. Sierra suggested it may grow together eventually, but it may never fully heal. At this time, I was also experiencing pain with the screws in my hip. With the freedom to exercise I lost about 10 pounds, this caused my screw to stick out about 1/4 of an inch under my skin. My jeans caught on it and bruised it from the waistband. I would occasionally hit it on counters and chairs. So this last winter break I choose to have my screws removed.

My doctor said this is quite unusual, as I was his 7th screw removal out of around 75 of his PAO patients. This was my last surgery. The surgery itself lasted about an hour, and then I was in recovery for about 3 hours. I was given Tylenol and could walk out of the hospital with minimal discomfort and no crutches. I had two screws removed and the small pain in my hip is getting better.

Overall I recommend talking with your doctor about which surgery and in which order is best for your situation. I was lucky enough to have all of my surgeries during school break so that I was mostly recovered before returning. My doctor was able to take my displastic hip from 19 degrees of coverage to 28 degrees. This has greatly taken away my hip pain. My other hip is within the normal range of 25-35 degrees of coverage.

Each individual journey is filled with its own trials and success. Many people my age have had 100% full recoveries back to sports, but there is a small chance that the pain will be mostly gone but you won’t be 100% fixed. To me it was worth the surgery process to be able to walk, swim, practice yoga, and live without pain in those activities, rather than to suffer in pain scared that the surgery didn’t guarantee me to be the active person I was used to being.

Every individual that goes through this process is scared of this giant decision looming in front of them. It is up to you to decide if the risk is worth it. The recovery is long and there is a chance that it won’t work exactly how you had hoped. I have grown and matured so much from this process and I could never have done it without great support and my faith in God and his plan. I am happy to say that my journey is over with success in my eyes. To those of you still on your journey, best of luck and know that things will get better.





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May 5, 2020 Ashley

Ashley

My name is Ashley and I’m 29yrs old. My mother was told I had DDH (both hips) soon after my birth. Being a female and...

My name is Ashley and I’m 29yrs old. My mother was told I had DDH (both hips) soon after my birth. Being a female and first born to a very small young mother I was at high risk for this medical concern and was able to have the problem addressed very early. I was in a cast for the first months of my life followed by “double diapers” as Grandmother called it for the time up until I was potty trained. Doctors told my family I would most likely need assistance walking, but not to expect any normal development and to feel blessed if i walked at all. I began walking at 7months amazing the doctors who with hopeless attitudes told my mom she should feel lucky to have a child that walked and not to expect any sports or running of any kind in my future. I played basketball, volleyball, ran track, did power lifting, even took Karate…and did quite well if I can say so myself.It seemed that exercising and a healthy diet, along with early treatment changed my prospected outcome. The only problem is very important and the reason I’m sharing my story.

I managed to stay healthy until other medical problems I was unaware of began to pop up. I had put my “hip problem” out of my mind and have grown to deeply regret that decision. After breaking my hand and injuring my knee at 26, I had reached a point where I could not continue to lie to myself. I had been through a lot of medical problems before the knee injury that weakened my body and brought old problems back. I have an optic tumor, tied to a nerve disorder still undiagnosed and all my other issues stacking up. My sons birth at 25 was an awesome and special time for me so I tried to ignore the multiple issues that were triggered that day. I felt extreme pain in my legs during delivery but due to poor medical attention by my doctor who had told me I should expect a baby no larger then 7lbs. My pain was put off as just pressure, you cant feel anything I was told, you’re numb. 28Hrs later I was being rushed in for emergency c-section, kept awake just long enough to say hey am I suppose to feel that blade cutting me. I had given birth to a healthy 9lb 11oz baby boy. Because of my tumor and DDH things should have went very differently. Now I’m finding keeping up with my soon to be 5yr old is becoming more and more difficult. As other mothers might agree we tend to put ourselves last a lot…and we forget to take care of ourselves like we should. Along with being a mom I also am the wife to a husband battling mental illness. So I have filled my life with plenty of reasons to not pay attention or give to much thought to how often I was in pain or the fact that the limp in my walk had become an everyday thing. Now I am like most Americans unemployed and uninsured. I have no idea where to start, i havent been to the doctor since I broke my hand and when injured my knee…over three yrs ago and even then I just hand my hand operated on, no time for knee surgery or follow ups on optic tumor, I had to hurry home to change diapers and continue breastfeeding my new baby. I find myself so overwhelmed, in pain and no clue where to go.

My family feels blessed to have a roof over our heads and food to eat…what am I suppose to do? I want to enjoy the next adventure we approach but I am held back by the increasing pain and stress caused from my medical problems. Even though I have worked in the medical field for almost 10yrs, I have no where to turn. I had looked to my primary doctor who was also my boss, for help before the birth of my son, but he was so overwhelmed with the idea of having a sick pregnant women working for him, he did what all wonderful people who have less then 15 employees would do. He fired me, lied to unemployment, and then refused to release my medical records. I found myself hitting dead ends everywhere…What now ? I am so lost.
I hope that the start of story can be used as inspiration to parents with children who have DDH. Never believe in anything more then the impressive spirit and will of your child no matter what anyone says. To the adults never forget what you overcome it made your future possible. My biggest mistake is not taken better care of myself as an adult, and needing more help then I ever expected.
Before I finish Thank You to all the people who posted their stories. I feel a little less alone in world of pain….and thank YOU for taking the time to read my story, this is the first time I have shared my personal battles.





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May 5, 2020 Sam

Sam

20My pain started in March 2010, I was 29 and half way through my pregnancy. As my bump got bigger the pain got worse until...

20My pain started in March 2010, I was 29 and half way through my pregnancy. As my bump got bigger the pain got worse until I could barely walk, I had stabbing pains in my pelvis with every move I made. Diagnosed with pelvic girdle pain (PGP) caused by relaxed ligaments in pregnancy I was assured the pain would disappear after giving birth. The pain did go and was forgotten whilst I actively took care of my new born son. Six months later I took a Pilates class and as I moved into a sitting V position there was an audible ‘pop’ from the back of my left hip. It wasn’t until 3 years later, in December 2013, I would find out this was my labrum (part of the cartilage of the hip) tearing. During this 3 years I had limited mobility and a lot of pain, mostly in the groin area, which was aggravated with any activity, particularly walking and bending down. I also suffered with pain in the left sacro-iliac joint and bursitis. I was referred to physiotherapy many times only for the pain to subside for a short time when I would be discharged, get back to normal activity and then experience pain and limited mobility again.
I saw numerous physiotherapists, chiropractors, osteopaths and an orthopaedic surgeon who could not tell me what was causing all the pain and restrictions in my hip. I was sometimes told that the muscles around the hip were still not healed after pregnancy but, 3 years on, this diagnosis was wearing a little thin! Although I managed a lot of my symptoms with physio led Pilates, gentle exercises in the pool and pain killers things progressively got worse. By the beginning of 2013 I could only walk for 20 minutes before the muscles in my hip would seize up and the excruciating back pain would begin. Resting no longer helped, I couldn’t work very much and had to postpone studying as I couldn’t sit for very long without the hip flexors seizing up completely. As I was told nothing was wrong by many health care professionals I continued to push through the pain and managed it as best I could. However, the flare ups were lasting longer and my activity levels were getting less and less before I experienced pain so I continued to push for answers.
I had already had an x-ray and told nothing was structurally wrong in the pelvis so after finally being given an MRI scan and another x-ray I was given a diagnosis of bilateral hip dysplasia which had caused a labral tear and arthritis in the left sacro-iliac joint. I was referred to another orthopaedic surgeon to discuss an arthroscopy to fix the labral tear. When I saw him he told me that an arthroscopy is not likely to work effectively and because of the hip dysplasia the labrum would be likely to re-tear. So, I was referred for a peri-acetabular osteotomy with Mr Bankes at Guys hospital in London. He told me I had dysplasia in my left hip only , there was no arthritis in the sacro-iliac and I was a good candidate for a peri-acetabular osteotomy. It was not an easy decision to make to go ahead with the surgery but I decided to go for it as the alternative was to continue to manage the symptoms which would have gotten worse and then eventually I would have needed a hip replacement. One thing that helped me to make the decision was the fantastic support of other ‘hippies’ that had gone through the surgery and were much better off for it. The surgery also gave me some hope that I could actually be pain free again, able to live an active lifestyle and not spend all of my free time managing the condition.

So, 4 months post op I am still recovering but already experiencing less symptoms and pain than before surgery. I hope it continues this way and I can reclaim mobility and whatever activities I choose!





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May 5, 2020 Michelle

Michelle

My name is Michelle, and for all my life I can remember having trouble with my hip. As an infant, I was diagnosed with congenital...

My name is Michelle, and for all my life I can remember having trouble with my hip. As an infant, I was diagnosed with congenital hip dysplasia. I was seen at Stanford’s Children’s Hospital and went through the standard course of treatment. At a couple of weeks of age, I was placed in a Pavlik Harness which was unsuccessful. Then I went through a series of closed and open reductions to try to get my hip back in the natural socket. With each surgery, the doctors repositioned my hip, but it never stayed in the socket even though I was placed in a spica cast each time post op. By age 3 after multiple failed closed and open reductions, the doctors and my parents decided to leave my hip out of the socket. While going through all these surgeries was a difficult time for my family, luckily I don’t have any memory of this period.

From age 3-12, I was able to engage in normal activity. I went to school, played sports, and participated in dance. I walked with a limp because my left hip was located higher than my right hip, but it did not cause major problems. However, one day out of nowhere, in 6th grade I woke up to in extreme pain. We went to see my orthopedist and he took x-rays but could not find anything out of the ordinary. We hoped the pain would dissipate, and I was prescribed pain medicine. The medicine was not very effective and soon we were referred to a pain clinic. They too were baffled by pain. However after 2 months, the pain seemed to go away.

In the fall of my 7th grade year, my orthopedist preformed a pelvic and femoral osteotomy. The hope was that his would prevent future pain. I was once again placed in a spica cast, had to use a reclining wheelchair for about 3 months, and then afterwards I went to PT to learn how to walk again. Overall, the pain was managed pretty well, but being in a spica cast as a 13 year old girl is no fun.

In 8th grade, my orthopedist lengthened my left leg in order to reduce my leg length discrepancy. This was extremely difficult for me. The surgery basically involved having the doctor break my tibia on purpose under anesthesia and then place pins and a rod that stuck out of your leg. I had to turn the device 4 times a day and each day my bone is pulled apart 1 mm. The idea is to pull the bone apart because the body will naturally fill in the breaks. Normally, this is not supposed to be a painful process, however, my device was placed incorrectly which led to excruciating pain that the doctors did not believe. They lengthened my leg about 2 inches over a period of about 6 months. The surgery was technically successful but it left me being extremely wary of the medical profession.

In 10th and 11th grade, the hip pain that I experienced in 6th grade returned. Both times the pain came out of nowhere, and it lasted for about 6 months. It hurt to walk, and I stopped going to school because I was in so much pain. I withdrew from my friends and spent most of my time on the couch watching television. I went to see multiple orthopedists, pain doctors, neurologists, chiropractors, acupuncturists, and no one could identify the cause of my pain. I had x-rays, MRIs and bone scans performed. I tried a tens unit and biofeedback and was prescribed a variety of pain meds none of which were effective at reducing my pain. On most days, my pain was stayed at 7 out 10 all day long, and the doctors considered placing me in an inpatient pain clinic to try to manage the pain. Even though my hip was out of the socket (and had been basically since birth), most of the doctors did not think this was the cause. I kept getting referred to different doctors but none of them were able to alleviate my pain or give me answers.

In October of 2002, my life changed when I met Doctor Diab at UCSF. Despite being shown the same x-rays that my previous doctors had seen, he had a completely different interpretation. He told us that it is common for girls in adolescence who have a false socket to start experiencing pain, and he recommended doing a hip fusion to alleviate the pain. At this point, I was 17 and my options were to have a hip replacement, fuse my left hip, or wait and do nothing. However due to the intense pain, doing nothing was not a real option. I had already missed a year and a half of high school and felt completely hopeless.

Ultimately, I decided to have a hip fusion where my left hip was basically cemented and screwed in place. My left hip is fused at angle so while my gait is not “normal” it not as dramatic as you would imagine. I have no movement in my left hip. I decided to undergo this significant surgery for a couple of reasons. After getting second opinions, no doctors recommended getting a total hip replacement for a 17 year old, and I did not want live my life being cautious about putting too much wear and tear on the artificial joint or feel guilty when the hip wore out because I had been active. I also was casted in a fused position before surgery. This allowed me to experience what my life would be like with a fused hip, and it also significantly reduced my pain. Being casted made it a lot easier to move forward with surgery because in essence the test run had proved beneficial.

I had my fusion in May of 2003. The recovery took a couple of months, but my pain was greatly reduced compared to how I felt before surgery. I was able to return to school in August of 2003. The only restrictions my doctor has told me is to not engage in activities that cause pain. About 95% of my pain has been alleviated and I was able to go off to college without any problems. Having my hip fused does present a couple of challenges. Sitting for long periods of time can be difficult. I often like to use a pillow for my back or need to shift positions frequently. I am unable to ride a bike, and I have to pick shoes that I can slip into because I can’t bend at the waist to reach my left foot. Despite some of these inconveniences, I have very glad I had the fusion because it allows me to live my life without a lot of pain. While there are some activities that I physically can’t do because I can’t bend at the waist, the list of activities that I can do is much longer. I am able to swim, run, practice yoga, hike, drive a car, and I teach fulltime, which involves me being on my feet most of the day.

It has now been 12 years since my fusion. I hope that sharing my story provides people who feel as though they don’t have many options with questions they can ask their doctor. A hip fusion is not an appropriate procedure for many people, but for me it relieved my pain and has allowed me to live an independent life. I have been told most orthopedists are no longer trained in performing fusions partially because they don’t make a lot of money compared to hip replacements. While a fusion will definitely limit your range of motion, there is no expiration on it as opposed to replacements. My orthopedic troubles have had a great impact on my life, and I hope you are able to find a doctor you trust, who listens to you, and is able to help you live a pain free life.





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May 5, 2020 Sheri

Sheri

Hello,i am a 49 year old female, born with hip dysplasia. i have been a runner since high school,and besides the pain, it has come...

Hello,i am a 49 year old female, born with hip dysplasia. i have been a runner since high school,and besides the pain, it has come quite natural to me, and i have excelled.

However, just the past three months it is so painful i am down to just jogging like three times a week and no longer able to race or do speedwork.

i am so sad and so confused what to do. i went to the orthopedist and he said gravely to me with sympathy,,,,how are you..? i said i was fine until i saw your face. I said it must be bad? he said yes you are definitely going to need that right hip replaced within five years…

i was just crying then, are you sure…? so now i just feel so afraid, but i dont want to be in pain. i wish as probably everyone else does that there would be a way to just build more collagen to pad that damn bone and take away the pain…!

anyway, i just keep trying to think positively but i know after you get a hip replaced you are not suppose to run on it. that is so sad…





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May 5, 2020 Elizabeth Blake

Elizabeth Blake

I was born with a congenital dislocated hip but this was not picked up at birth. My grandma comment i was not crawling right as...

I was born with a congenital dislocated hip but this was not picked up at birth. My grandma comment i was not crawling right as a child, to keep her happy my mum took me to the GP. He inturn to keep her happy sent me to the hospital where at 13 1/2 months it was disgnosed. Fortunaltey it is only my left hip but surgery was required to re build my hip. I dont remember it causing me any problems growing up as a child but when i look back a family photos i notice my left leg never flexed like the right did. I was followed up until the age of 18 then discharged.
I went on to work in the orthopaedic industry as a marketeer for a medical devices company. As time went on i noticed i was getting less and less range of movement from my hip and by my mid thirties i was starting to adapt my activities to accomadte this. I learnt new ways to put on socks and different stretch excercises after gym sessions as i couldnt do things theway other people did.
After a particularly active holiday one of the orthopaedic surgerons i was working with noticed me limping and agreed to have a look at my hip. The X ray didnt look too bad but the range of motion was definatly reduced. He advised painkillers but said this was only a matter of time before i would need a hip replacement. He siad it would be the effect on my life and the activities i wanted to do that would make me decide rasther than pain.I managed another few years with painkillers and reducing activites, i stopped running and could only do a 6 mile dog walk. At 43 i decided enough was enough as i was getting pain towards the end of a day also and went for the Hip replacement.
I chose my surgeon carefully as one who specialises in young hips and evantually has a minihip with ceramic on ceramic bearing. I was in hospital for 4 days and came home with crutches. At the time i thought the recovery was very slow and initially worroed how long it would be beofre i got a good nights sleep and could return to work. I did not have a lot of pain but tired easiley after the shortest of walks. When i look back at the whole experience i realsie how quick my recovery was really. I was back on a stationart bike at 4 weeks post op, all be it for a few moments only. At 6 weeks i was riding it for 15 miles. I am now 3 months post op and doing really well. I have returned to all my daily activities and am back at the gym, most of the time i forget i have had a hip replacement.
It was a scary prospect to face hip replacement at 43 but i really havent looked back. If i was to give any one advice it would be choose your surgeon carefully, there are implants, like MiniHip, developed specifically for younger patients today. The other piece of advice i would give is follow what the physiotharapist tells you. The excercises are tricky to start with but it really does benefit you to stick with it. If the physio says to try and do less not more, as mine did follow what they say, its only a few weeks of inactivity which in the long run really is a price worth paying.





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May 5, 2020 Cassie

Cassie

I am 26 year old veterinarian and an was diagnosed with hip dysplasia 3 years ago (later half of 2012). The unfortunate part was, that...

I am 26 year old veterinarian and an was diagnosed with hip dysplasia 3 years ago (later half of 2012). The unfortunate part was, that this diagnosis only came through me pushing my doctor. Throughout my childhood, from as early as I can remember (being about 4 years of age) I suffered severe hip pain and associated problems only to be pushed away by family doctors, disregarded as growing pains, or it just being in my head. My mum was told she was ‘cruel’ for wanting me to be x-rayed to be checked. I was always picked on for walking funny, my mum used to say that I waddled… others simply said my lower posture was terrible (I find my pelvis rotates forward, without me realising to increase femoral head coverage to minimise subluxating).

It was in 2010 when, after not being able to walk, get in and out of bed or a vehicle, and starting to subluxate my hip that I saw my GP about my hip/groin pain. This doctor referred me on for X-rays and ultrasound. The X-rays had to be sent away to be read by a radiologist, the ultrasound results were seen on the day (I am a vet so understood what was going on). On ultrasound they found a right inguinal hernia, this was my most painful side. I can remember laying down for my X-rays making the remark that I swore my hip joints were the problem and that I could feel them popping out of joint. The look I got was priceless and one of ‘I think you’re silly and over-reacting!’. I went back to my doctor a few days later and the diagnosis was made of a right inguinal hernia and that, quote, my X-rays of my hips were ‘anatomically normal’ (I will attach a photo of that!).

So I got the hernia repaired. Six weeks of rest followed and I was feeling better. I then tore my cruciate ligament in my left knee. A few more months of rest. My hips felt generally ok. But as I began to get more active the pain came back with an absolute vengeance. I was certain now that my hips were dislocating. I couldn’t get around most days. I couldn’t walk more than 100m at a time. My parents had to wait at every corner of the street for me if we went shopping down town in Wagga. That says a lot considering my mother has injuries from a car accident from over 15 years ago and is slower than the average person getting around.

I returned to my doctor in 2012 and voiced my concern. I said to him it was in the joint and I thought they were dislocating. He replied with ‘but you would be in a lot of pain’. I answered simply- ‘I am in a lot of pain’. I could see he didn’t believe me. He asked if I had been to hospital and I said no. He tried to dismiss me. After a bit of backwards and forwards with him he agree to refer me to have X-rays and an ultrasound, but only because he thought my hernia had reoccurred.

So back I go again. This time on ultrasound they found I had basically no labrum left on my right hip joint and I had what looked like a a cyst on my femoral head. On the X-ray table I laid there in agony. My right hip subluxated as I was asked to lay down.
The results came back as bilateral hip dysplasia. I was referred on to a hip surgeon in Wagga. I took my X-rays from 2010 as I did not have the current ones (as they had changed to a digital, web based system). He read those X-rays and came up with the same diagnosis. He told me he had to refer me on, I was too complex and I needed expert advice. This was in the June of 2012.

The following January (2013) I visited my current specialist and reknowned surgeon Dr Michael Solomon in Sydney. He agreed with my diagnosis and I was placed onto the waiting list for a PAO. He said if I didn’t have this in 5 years time I would need total hip replacements of both hips. I have now had my right PAO done, exactly 12 months ago and am booked in for my second, on my left in June alongside screw removal for my right.

It has been quite a journey for me. And my parents. It has been one of upset, disappointment, frustration and heartache. But at the same time one of gratitude and positivity as I know what is wrong with me now, and know it could be much worse (e.g. bone cancer etc). My right hip is starting to feel good, in the last couple of weeks I have noticed a tremendous difference. Not saying I am pain free, but it is a darn sight better than what it was. Hopefully once I am fully recovered, after the next 12 months have lapsed I can start to appreciate a somewhat normal life again.

Thanks,
Cassie MacDonald
#PAOproud





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May 5, 2020 Jaye

Jaye

I am 48 years old and had a Salter osteotomy at two years old. At 10 years old my leg was an inch shorter than...

I am 48 years old and had a Salter osteotomy at two years old. At 10 years old my leg was an inch shorter than the other. I don’t know the name of the surgery that was preformed I only know I was cut on the outside of my thigh and a rod with steel plates were put in and later removed a year later. The leg was the same length for about 7 years, or that is when I began noticing I was standing with the leg bent and leaning in towards my right side. (Left hip was the one with the surgeries) Now my leg is a half an inch shorter and the pelvis is twisted a half inch.

I lift weights and exercise daily. I have always had a certain degree of pain, or discomfort. I am however experiencing more pain and discomfort. While working out doesn’t hurt, walking long distances, which aren’t long for others, or sitting more than a half hour at a time does. Everything I research online tells me about arthritis for “normal” people.

I am sure I have osteoarthritis to some degree but the research results aren’t in the same area. Probably because my hip isn’t in the right area as everyone else is. I’m not really sure I want to risk surgery at this point. My fear is if the hip is replaced and put in the right place how is that going to effect my pelvis and nerves.

Will I feel different being normal?

Will it be uncomfortable to be like other people.

Does that make sense?

I am also flat footed. The pain is in front where my hip is. You can see the difference if I were to show you, it’s in back of me, on the outer left side of my but. My lower back hurts. I have a lot of muscle stress on the left middle part of my spine and shoulders. I get a massage monthly and they said they can not completely relax the muscles they tighten right back up. My knee on the inside hurts my shine and ankle. It’s all related and the flat feet have a lot to do with it as well. I’m wondering if anyone has had this surgery and how they are doing/any other related surgeries…where and when I may be heading in the future.

I’m not a big surgery type of person so I’d like to hold off as long as I can. My oldest in getting married in September and nothing is going to stop me from dancing up a storm…I’ll pay the next day but that’s fine with me. Any help or shared stories will be very much appreciated.





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May 5, 2020 Morganne

Morganne

Hello,I would like to introduce myself and tell you my story being a fighter of hip dysplasia. My name is Morganne Glover Comstock and I...

Hello,
I would like to introduce myself and tell you my story being a fighter of hip dysplasia. My name is Morganne Glover Comstock and I am 23 years old. I first noticed my hip dysplasia when I was 9 years old in 3rd grade not being able to sit crisscross applesauce with my classmates. I told my mother and that year at 9 years old I had my first hip surgery. They corrected the ball and socket by putting 3 screws to hold it in place. I then was in a body cast the entire summer. After my cast was off I continued living life as a kid and playing the sport I love the most, basketball.

I was a 4 year MVP at my high school and a state champion. I then was recruited to play basketball at the Division 1 level. My freshman year was very successful but my hip was starting to feel worn out. In 2010 when I was 18 I had a PAO on my hip. They reconstructed my hip and put 5 screws in it. Although my doctor told me to quit playing basketball, I still fought and continued to play. I had to relearn how to walk all over again, jog again and then run again. I have had some of the best trainers working with me on my gait.

The love I had for basketball pushed me and motivated me every day to get better. 2015 I graduated college with a bachelors degree in communications and I also became the first All-American of my school my senior year of basketball. I have taught myself how to play the game of basketball even with one hip. Although it was very painful, the support I had from my family friends and teammates were amazing.

I now have decided to hang up my basketball shoes and get the help I need. I recently been seeing a local doctor and have gotten an SI injection and a Hip injection to calm down the pain. I take Meloxicam to help calm the inflammation as well. But one of the most helpful solutions I found to help me feel more confident and healthier is Aquatic Therapy. This location is a warm relaxing pool where they teach and help you fix my walking gait non impact. Being in the water is the best feeling. I feel much stronger after walking out of the water. And I am able to stand on my own happily. I strongly recommend this place to any one struggling with hip dysplasia. I will be there working and striving to help all the patients struggling with walking feel better and confident. One hip world, thank you for reading my story. I hope this helps.

-Morganne





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May 1, 2020 Ethan

Ethan

Hello my name is Ethan Welton. I am 18 years old and was diagnosed with hip dysplasia when I was 16 years old. As a...

Hello my name is Ethan Welton. I am 18 years old and was diagnosed with hip dysplasia when I was 16 years old.

As a kid I played sports every single day with no pain what so ever. I had no signs or symptoms of hip dysplasia until my 7th grade school year. I started walking with a small limp. As time went by my limp got bigger and more noticeable. No sooner then that the pain came. It was bearable for about a year or so. After that I could only walk about 100 yards without having to rest my right leg. It felt like bone on bone sharp pain at times and others it just felt like my hip socket was very stiff.

I went to my regular family doctor and he said it was growing pains and that I would eventually grow out of it. I persisted to my parents it was something more and they decided to take me to a specialist at Riley Children’s Hospital. I was diagnosed there with hip dysplasia but it was determined that I was fully grown and couldn’t have the surgery there. They had to send me to IU Methodist Hospital. Once I was there I had more x-rays. This time it got a little more serious. I had a severe case in my right hip and a minor case in my left. We had to do the surgery as soon as possible and the closest date was a week later 3 days after my 17th birthday. This devastated me one day I had no idea what hip dysplasia even was and the next I was having surgery for it.

The surgery was successful I just had to spend 3 months in a wheel chair. This moment in my life changed me. Since that day I have committed myself to helping people. I am currently going to college to become a surgical nurse. One day I plan to assist in hip dysplasia surgeries, and spread awareness.
Thank you for reading my story and please comment if there is anything my story can do to help you.
-Ethan Welton





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May 1, 2020 Khristie

Khristie

1980sMy story begins here, My mother, 19 years old, at six months into her first pregnancy has been concerned about the movement of her child,...

1980s
My story begins here, My mother, 19 years old, at six months into her first pregnancy has been concerned about the movement of her child, there’s no movement at all, and her sister-n-law just gave birth to a still born baby girl. Her doctor assures her that her baby is indeed alive and growing ,and that she would give birth to a healthy baby not to stress out, it would only cause more problems. At delivery ,my grand mother at her side ,my mother gave her last push. My grand mother ,instead of a look of joy had a look of shock, in panic she covered my mothers face with the sheet covering her face so she couldn’t see as I was rushed out of the room.

I was born with Congenital Hip Dysplasia, Double Congenital Knee (patellar) Dysplasia, and Duplex Kidney Disorder. Through manipulations, and serial casting for treatment I was sent home ,without hope from the doctors that I would ever walk.

It did work! My mother still today talks about one of the best days of her life was when the last casting was coming off and the Doctor warned not to have false hope that my joints would most likely return to their original state. After my legs stayed in position for several hours they sent me home. My mom says she never saw before or since a baby so happy when I realized later that night that I could move my legs the first time since my birth, I was eight months old. I continued towards progression, learned to walk, then run,and I was deemed a miracle baby.

1990s
This is when my Kidney disorder came into light ,and the procedures to correct the defects, which is another story of it’s own ,and for another time.
Without any medical coverage somehow throughout the years I am getting regular check-ups ,but my hip and knee joints are treated like anyone else’s who have had a normal birth. I was not seen by a doctor ,or had x-rays during growth stages. At this point in my life my conditions were neglected.

2000s
It all came back when I signed up for the high school track team. Got my approved physical with no restrictions. The coach told me to first try the long sprint because I have really long legs. A third of the way through something very painful in my left knee and hip happened it felt like my whole leg just seized I couldn’t move my hip or knee joints ,and I hit the ground hard ,but still wasn’t taken to a doctor to see what happened. Some times I think that my mom wanted so bad to believe the miracle, that I was normal she didn’t honestly believe that there was a problem or issue to give attention.

Still in high school ,but not running track lol, I started my first job at a fast food joint. Between going to school in the day and work at night most mornings I was waking up to extreme stiffness in my hip and knee joints. This time I was seen by a health plus, which told me that it was juvinile arthritis to take nsaids every day. I was not given an x-ray.

As a young adult I had many jobs none that wouldn’t totally effect my life. It was all I could do, go to work, and come home in pain and try to do everything I could do for relief until my next shift. The pain led me down some wrong ,long ,and hard roads.
I got married ,and quit trying to work to focus on starting a family. I had two children, and stayed at home. The pain was there but I could manage with it, taking rests through out the day. I started having good and bad days, then it seemed like changed to bad and worse days.

2010s
The pain, in my body and mind. All the things my children ask me to do ,and get “I can’t baby”. When I walk my hip and knee joints do what I call “jumping”. Both of my Patella’s (knee caps) are fractured due to misalignment and grind ,and my hip is very close to dislocation with every step. I soon will undergo several surgeries to correct my joints because of growth are misaligned. I can’t do all the daily things that a homemakers and mothers do for their family , and I can’t work. I have tried to get help from social security without prevail. Daily life is so hard to get through for me between my conditions, and the hardships of having low income. I wish I could do so many things and ways to provide for my family. I have little to no support from my family, they still want to believe the miracle they dismiss, and avoid me when I’m suffering. Sometimes I wonder how much it would help me to have their support. I am now having depression stem from all the above. It feels great just to share my story. I am frightened of what comes next in my life ,if a wheelchair before my children are grown is in the future. Above all else I will not lose my hope ,and want for healing.





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May 1, 2020 Codruta

Codruta

Hey guys, I am a 25 year old young woman from Romania (Eastern Europe – for those who don’t know where Romania is). This is...

Hey guys, I am a 25 year old young woman from Romania (Eastern Europe – for those who don’t know where Romania is). This is my hip dysplasia story. It’s a story that to me is unique and out of the ordinary, but which apparently is not much different from all of the others posted here. That makes me glad, makes me feel less alone in this 🙂 Here goes!

I was born with hip dysplasia. My mother noticed that I was only moving one of my legs, the left one I kept perfectly still. So I ended up having surgery at six weeks old. Only a baby and I had hip surgery. It wasn’t much success, I also wore a cast that covered both my legs up to my waist. I also had weights hanging from my dysplastic leg and was even put in some sort of medical circle which I was too young to remember and the device is probably no longer used. At 4 I had another surgery and a cast that covered both my legs up to my waist again. It was traumatizing. I was a lively child and having to be imobilized was no fun.

After the surgery at 4 years old I had no surgery for a while. I didn’t have much problems with my hip. I could walk fine, run and didn’t have any pain. However, by the time I was 16 I had a leg length difference of 2 inches. It gave me a bad gait, it hurt my back and it hurt my legs. It hurt me both physically and emotionally. I didn’t like my gait at all. It felt weird and uncomfortable. Others would sometimes point it out to me, and some would even make fun of the way I walked. I decided to have surgery for it. At 16 I had surgery to lengthen my left leg with one inch and shorten the right one with another inch. This way the length difference would equalize.

The recovery for the surgery I had 16 left me quite traumatized. The surgery itself wasn’t a complete failure, but the way I and my family responded to the complications still hurts today. I was supposed to stay two weeks with my legs completely straight help down by cast that covered only my ankles, after two weeks I would get the cast off and start having a bit of physiotherapy without putting any weight on my legs for 2 months in total. Not so much right? Pretty reasonable I thought. However, after the cast came off I was in so much pain and my legs were so weak I could not even bend my knees. After two months I went to a check up only to find out it was a complete mistake not to move my legs at all, and that my bones were not healed. The consequence was that I had to stay another 2 months without putting any weight on my legs. I started physiotherapy which went alright, but my bones were only healed after 11 months after the surgery. Until then I had not held my own weight standing. I had not even used a wheelchair, and had only been imobilized in bed with a lot of pain. It was traumatic, and the whole thing was filled with mistakes. Thankfully I had a great young physiotherapist, who was also a dashing gorgeous guy, and lovely friends that constantly visited me. My family were also there for me as much as they could and each in their own way.

Fortunately, at one point I started walking and although the recovery was painful and long I can now walk just fine. My legs have only a 0.2 inch difference between them and I have some pains and aches here and there, almost every joint seems rusty, but I am doing alright for now. I can swim, ride a bicycle, walk for far distances, hike and do yoga.

I can’t really jog, it feels too weird. Some parts ache while others feel weak when I try to do it, plus I’m terrified it would hurt my dysplastic hip so I avoid it altogether. I still have a metal rod in my left femur, the leg with the hip dysplasia, but several doctors said they would only take it out when I would need a hip replacement which from their predicaments should be when I will be around the age of 50 or hopefully 60. I do hate the way my hip looks, it feels abnormal. My greater trochanter grew towards my iliac crest and it pokes out through my skin. People can’t tell when I’m clothed, sometimes not even I notice it, but I’m too self-conscious to wear any overly tight dresses and its quite visible when I am naked.

I’m pretty much afraid of not hurting my hip so I avoid any activities I think are dangerous such as running, jumping on trampolines or doing any high impact sports. I do stay active by doing fitness workouts, yoga, swimming and riding bicycles. I’m trying to protect my legs as much as I can while not living a life stopped by fear 🙂 It’s easier said than done!





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May 1, 2020 Melodee

Melodee

My passion for open water and marathon swimming has been a gradual process; one that I would never have imagined when I started more than...

My passion for open water and marathon swimming has been a gradual process; one that I would never have imagined when I started more than 20 years ago.

Although I returned to swimming 20+ years ago, it has always been a part of my life. I was born with hip dysplasia which was first noticed at a routine check-up soon after I was born. Subsequently, my father took me to a referral appointment with an Orthopedic Specialist. At the doctor’s direction, my father admitted me into Children’s Hospital and sadly went home alone that evening because parents were not encouraged to stay with their children in those days. I was immediately placed in a half body cast. I had multiple surgeries as a young child; one to correct the angle of the hip, and one to try and correct the difference in leg length as a result of the first surgery.

I have never been able to participate in impact sports because of the one inch leg difference, which also causes me to limp (without my corrected shoes). I vividly remember one of my last appointments with my pediatric orthopedic surgeon when I was 18 years old. He told me two things: 1) “Watch your weight” and 2) “You will probably need hip replacement by the time you are 40”. Like most teenagers, I thought I was invincible at that age, but his words have always stayed with me over the years. Swimming has helped keep me in shape and maintain my weight. As for hip replacement, that has not happened yet and maybe never will. I do tire easily from walking a lot, but if you put me in the water, I could swim for miles.

I saw my doctor about 8 years ago and, as always, he wanted to observe my walking. Then he was curious as to how my hip looked after all these years. He was very pleased with my hip x-ray and said everything looked great. I credit swimming 100% to my overall health. Swimming is a low impact sport and thus makes it a perfect sport for me and others with similar joint issues. There are many swimmers over the age of 40 because swimming is very easy on the joints. Unlike other endurance sports, specifically including running and cycling, wherein athletes are subjected to rigorous pounding of their joints, swimmers can continue to get better as they age.

I have always been exposed to the water. Our family joined a private club when I was very young. I quickly graduated from the baby pool to the intermediate pool, and then hit the “big” pool. By 8th grade, I joined the swim club in our city and, a year later, the girl’s high school swimming team. I swam the same events for every meet; the 50 backstroke in the medley relay, the 100 yard backstroke, and the 100 yard butterfly. I didn’t know about any other events, since the coach put you where he needed you. I thought my friend, Martina, who swam the 500 freestyle was crazy! How boring was that to swim 20 lengths of the pool in a race. In college, schoolwork took priority, but I recognized that I loved to train and I stayed active by training on my own in the pool.

In 1994, I needed an activity to keep me busy and decided to dive back into the pool. It was not easy at first. The first day, I swam 200 yards and thought, “Well this is boring, what did I get myself into?” I slowly started to increase my yardage and soon was feeling like I never left the pool. A swim friend told me about United States Masters Swimming (USMS) and that piqued my curiosity.

I have been a member of USMS since 1995. The first six months of swim meets, I swam the 100 yard butterfly and 100 yard backstroke because that was all I knew. Then I thought, “Hey, no one is limiting me to only these events!” So I tried the 200 freestyle and realized that it was not too bad. I continued to push myself by increasing my distances, first the 500 (yard), next the 1000, and then the 1650. The more distance I would swim, the more in the “groove” I felt.

My first open water swim was in Lake Amy Belle (Wisconsin) in 1996. It was a one-mile swim and I was pregnant at the time. That is when I officially fell in love with open water events. During the next few years, I had three children (1996, 1999 and 2002) and continued to swim throughout all of my pregnancies. When I was four days overdue with my second child, I swam two miles, including flip turns, before the contractions started. My son, Kyler, was born 2 hours later. I quickly bounced back from all three pregnancies; my doctors and I both believe that swimming should be credited for my quick recoveries.

I mainly swam one to three miles and did not know anything about marathon swimming. In 2006, I decided to try a longer swim, 5-miles in Minnetonka, MN. I finished 27th out of 99 swimmers with a time of 2:17:51 – not too bad for my first long swim. In 2009, I swam 8+ miles in Lake Geneva for an event called, “Swim for Freedom.” I really cranked up the distance in 2011 by swimming the 25K (15.5 miles) in Noblesville, IN. This was almost double my previous record distance. That was a tough swim and I was very sore afterwards. But, I finished even though their 10 hour limit was reduced to 8 hours because of storms. I finished 26th of the 27 who were able to squeeze in the time limit. The other 39 swimmers did not finish in time or were a DNF (did not finish).

By the end of 2011, a friend convinced me to compete in a 27-mile river swim in the Red River in North Dakota. This was a huge undertaking for me, so in preparation, I spoke with a marathon swimmer and a marathon runner for advice. The advice was: 1) spend more time in the pool training, 2) straighten out my nutrition needs, and 3) peak at the right times prior to the event. Knowing there was a river current was helpful, and I felt very good throughout the swim. The Red River was a success! I finished 3rd place of the 12 swimmers, coming in at 9 hours and 23 minutes (first was 9:11 and then 9:15). I felt great after the swim, just a little sore as expected, but good enough to find a bar where we could all enjoy a nice cold beer and share our experiences. I found my passion for marathon swimming. I enjoy the swims because I learned how to prepare for them.

Since 2011, I have swam in various states to compete: 10-mile swim in the Tennessee River Gorge (2012), 12.5 mile swim around Key West (2013), a relay swim for “Swim Across America” across Lake Michigan (from Chicago to Michiana, Michigan) (2013), SCAR Challenge in Arizona (2014) – completed 3 of 4 lake swims for 30 miles in 4 days, 10-mile USMS Championship Swim in Minnetonka, Minnesota (2014), one of three swimmers to test the 18+ mile course for the Three River Marathon Swim in Pittsburgh (2014), 10K swim in Cayman Islands (2015) and 6-swimmer relay swim around Catalina Island and Santa Barbara Island for 100 miles in 51:55.07 (2015).





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May 1, 2020 Demelza

Demelza

Hello, I am 32 and I was diagnosed with hip dysplasia when I was 27 years old. I wanted to share a little about myself...

Hello, I am 32 and I was diagnosed with hip dysplasia when I was 27 years old. I wanted to share a little about myself and my experiences with this hip condition so far which hopefully others of you out there, going through the same thing will be able to identify with…

When I was born, the nurse checked my hips as per the routine procedure and found nothing, therefore I do not know whether I had this condition from birth or whether I developed it as a result of something else when I was a young child, e.g. swaddling or whatever else. All I do know is that for a long time (until my late twenties) I had no symptoms. I had always until then enjoyed a very active life, dancing, running and keeping fit. One of my most favourite things to do after a stressful day at work or on the weekend was to run and exercise at the gym. I loved the adrenaline and endorphins you would get from doing frequent high impact running and fitness, it made me feel wonderful and so energised.

One day I decided I would really like to train for a half-marathon, so I started to push myself a little more at the gym. I always stretched and warmed-up beforehand and built myself up from a slower pace to a faster one. I felt I did everything that I should have done to prevent injury, however, on one fateful day, everything changed for, little did I know what would happen and what it would mark the start of for me.

An acute shooting pain ran suddenly down the side of my right hip, followed by a feeling of it collapsing and not being able to take my weight without pain. I quickly stopped the treadmill machine and limped painfully off of it. I hobbled home, thinking at the time that I may have pulled a muscle. Stubbornly, I kept going to the gym for a few more weeks but the pain did not subside, and I started to get worried as I found I was unable to run without severe pain.

After about a month a went to my GP, he referred me for X ray, which at first only showed that there was some fluid building up around the joint and that it had become inflamed. I took Ibuprofen as suggested, but it didn’t work that well. I read up about bursitis and thought it might be that, trying out various heat pads that were supposed to draw out the liquid, which temporarily seemed to help, but I still couldn’t walk long distances or run… Increasingly, the pain got worse, more so at work from walking and standing a lot, I couldn’t conceive of walking a few miles into town, because I knew I would be limping and in pain and agony from it.
As the months, then years went on it became worse and worse, physiotherapy, strengthening exercises and painkillers helped only temporarily. I knew, this was not a permanent solution.

I then went back to my GP who referred me to the hospital for an MRI Scan. This was a scary experience in itself for me, as I am claustrophobic. However, I knew it had to be done so I closed my eyes and pretended I was somewhere else for 20 minutes or however long it was.

I then had a meeting with the surgeon. I fully expected the surgeon to say, something like; well you probably have torn a ligament, tendon injury, bursitis or something along those lines…. I was not prepared for words I would be about to hear. “You have hip dysplasia… the only way it can be corrected properly is through major PAO Hip surgery”. My jaw dropped, I was so shocked.

So I had my pre-op, scheduled the surgery and was ready to go (if a little terrified). A few days later, I found out I was pregnant. I then had to cancel which put a delay on my surgery. After my son was born I was given a date which was too close to my wedding, so then had to cancel again, finally when my son was aged 21 months I went ahead with it.

I was terrified, who would look after my son in those first few weeks? How would we manage, emotionally, financially? Would the surgery be successful? Would I have complications etc…? I tried to prepare as much as I could before the surgery, but I believe, nothing can ever prepare you fully. Luckily my parents agreed to look after my son for a month whilst I was recovering; they live miles away in Scotland so we would Skype every day, which was lovely. It was comforting to know that our son was in good hands and thoroughly enjoying himself, though we missed him lots.

On the morning of the day of my surgery, there were tears in my eyes as we dropped off our son at the child-minder’s as I knew it would be last time I would see my son before the surgery and that the next time for a while would be briefly whilst I was in hospital, after that I would have to wait several weeks before I could give him a big hug again.

The day of the surgery was surreal. I went in with my husband, I made a few jokes I think to cover my nerves. I then hugged him, said goodbye and waited alone in the surgical admissions unit. Various checks were made beforehand as usual, samples, blood-pressure etc., I waited until one of the analgesia team came to explain to me about how I would be put to sleep and pain control methods I would like to choose from. At this point I came over all faint, it became real… I was then later spoken to by another of the team who tried to put me at ease and the surgeon. I had to sign the consent form and was then brought into a small room by one of the analgesia team.

After that, I had to sit and have the epidural put in my back, I then lay down whilst a mask was put over my face. I can’t remember even falling asleep. All I then remember is waking up. I fought to wake up, as I was under that deep, I struggled to breathe. Probably partially due to,( as I learned later), the fact I lost 2 units of blood in surgery (and needed a further two transfused later) I also had low blood pressure. My hip was very painful upon waking; the epidural mostly numbed the wrong leg. So a member of the team kept pumping more and more pain relief through the epidural site until it was to an acceptable level on the operated leg.

The first night was the worst night, I couldn’t move at all. I was completely flat on my back and had to pretty much stay that way. I couldn’t move either leg initially. My parents came down the day after. At this point I was still very much relying on my self-administered pain relief pump. However, unfortunately to my dismay my pain relief started to get out of control…
However, I felt instantly happier, when my family walked through the door later. Seeing my parents, my husband and my son for a short while, helped to lift my spirits. My mum and dad brought round lots of magazines and a big basket of fruit, it was a comfort to see them and I got to hug and kiss my beautiful little nearly two year old boy… magic!

After my parents and son had gone to make the long trip back up to Scotland, my husband was with me, I started to writhe with pain. I am not one for screaming with pain; however the level was becoming unbearable. The nurse, asked, what score would you give out of 10 for pain. I said, 9. Unknowingly, she said are you sure? I said yes. Later that night, I begged to see the pain team. The nurse said they were in theatre and one would come through when finished. When one finally arrived, the answer to my pain was plain to see. Even though, I was administering myself pain relief, through the pump, it wasn’t going into my spine. Instead, it was leaking onto the bed, it had become disconnected!!

The lady from the pain team, reconnected it, but then spoke to her boss and agreed there is a slight risk of infection in doing so, so would have to swap it for a morphine based one, which would go through the cannula in my hand. This method was less effective for bone pain, though I started to feel much better than before.

The day after, I was becoming incredibly weak and drowsy, due to low blood count. I then needed to have 2 more units of blood transfused through the cannulas in my hands. The nurse, unfortunately didn’t tighten it up enough so blood went absolutely everywhere! The doctor then had to come by and put a different cannula in my arm and do it again…

After all that drama with the blood; which I can laugh about now. I finally, I started to feel a lot better and get a bit more colour in my face. Over the days the followed, I gradually started to move my legs slightly more, walk to the chair, with a frame, and then learn to use crutches, up and down the stairs. I was able to leave the hospital after a week.

I am now nearly 1 month post-op so early days… watch this space for an update on my progress and recovery. I hope my story so far helps some of you in some way, to understand more about what to expect. It is a major surgery and it is a long road, but we are warriors and we will get there!





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May 1, 2020 Julie

Julie

I was diagnosed with hip dysplasia as an infant (1983) when doctors were not so informed on the issue, I did not begin to have...

I was diagnosed with hip dysplasia as an infant (1983) when doctors were not so informed on the issue, I did not begin to have problems until I hit adolescence and that is when I had my first hip surgery. I experienced popping and clicking with pain and had some bone shaving of the hip socket and some cartilage replacement done, my right leg is a quarter of an inch longer than my left leg and I have to wear a heel lift in order for my body not to be leaning to the left too much which causes more pain.

I am now 32 years old and have osteoarthritis in my right hip and just had my third hip surgery September 25th to repair a laberal tear which could not be repaired because my laberal muscle is pretty much gone from my surgery 3 years ago, the doctor who did the surgery shaved some bone off of my hip ball joint to prevent anymore tearing of that muscle (which hopefully works).
I have tried physical therapy, injections in the hip which only lasted about a week and stayed away from sports and was told to stick to swimming. I have learned that being informed on hip dysplasia could have prevented most of my problems that I now experience.

Many doctors even now do not know much about hip dysplasia and there were many times where I was brushed off by doctors, which was very irritating and took me almost 2 years to find a doctor who finally did some x- rays and an MRI and found that I was not lying about my symptoms. I found out that my niece who is now 8 years old also has hip dysplasia and I am trying to gain as much information as possible for her and her mother so she can prevent problems. She was diagnosed as an infant and wore the special brace where her legs were to her sides like a frog.
I am terrified that I will have to have a hip replacement in the next 10 years and hopefully from doing research I can help my niece from experiencing pain and multiple surgeries as I have. I am hoping that this last surgery will provide some relief but I am not too sure. I have learned that hip dysplasia may cause mild scoliosis of the spine depending of the severity of the dysplasia.





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May 1, 2020 Suri

Suri

I am a 28 year old young woman who was born with bilateral hip dysplasia and was later diagnosed with Ehlers Danlos Syndrome Type III...

I am a 28 year old young woman who was born with bilateral hip dysplasia and was later diagnosed with Ehlers Danlos Syndrome Type III (hypermobility). My doctors didn’t find the dysplasia right away (my hips didn’t click) and only after 6 months was the problem discovered. I had a couple of closed reductions done and then was put into a spica cast and traction for many months and unfortunately this did not resolve the issue. I ended up having open reductions, followed by pelvic osteotomies on both right and left hips (the left one eventually did resolve) but the the right one continued to be problematic. After many more attempts on the right side (I think I’ve had over ten surgeries on my right hip), and then one to destroy the growth at the kneecap of my left leg-since the right one was now significantly shorter than the right, my doctors decided that since I was managing to walk (albeit with a limp), it was best to let me ride it out until I needed my hip replaced. The x-rays looked pretty bad-every year I had some more wearing away of the joint, but the pain was manageable and I was encouraged to wait as long as I could.

I was a teenager who pushed myself despite my limitations (I went on hiking trips, participated in gym class, etc.) but the pain got increasingly worse, especially after I broke my left leg after a bad fall down some steps. At 21, my doctors told me that if my pain was bad that it may be worth getting my hip replaced. I was told it would really help pain and mobility (my R hip could never really abduct or extend backwards and I walked with a Trendelnburg gait). I couldn’t wait to have it done.

Unfortunately after the replacement and a full year of physical therapy, I felt exactly as I did prior to surgery (same pain, no more mobility, same weakness, same limp) To make matters worse, I started to feel pains I never felt before (weirdly enough on my left hip and back). Since then I’ve been on a journey to find out what happened. Why was this supposed to make things better, but it didn’t? (I saw that hip replacements helped some of you, so I’m trying to understand why it was different in my case.)

I’ve seen multiple orthopedists who look at my x-rays and all they do is extol the excellent work of the surgeon who replaced the hip. They can’t see on the x-ray why I would still be in pain. Most recently I’ve explored my EDS, and spent 6 months in London doing physical therapy and hydrotherapy at an Ehlers Danlos speciality clinic. I’ve found little to no result and continue to decline in other parts of my body (for ex: my left hip now now a bad labrum tear from overuse) My physical therapist has concluded (along with the EDS orthopedist I saw here who took many MRIs) that my muscles, soft tissues, and bone structure were badly developed since birth, and have atrophied over the years so at this point, plus has been cut up over and over in surgery, so the whole region looks and acts incredibly abnormal. (Apparently, certain muscles are not even appearing on the MRI! ) Therefore my body compensates as best it can with other muscles and it’s why I’m finding pain in other parts of the body.

Fixing the joint with a hip replacement could have helped if that was the only problem, but there is a whole world of other problems in the soft tissue and structure that all of the physio in the world can’t fix.

At this point, I’m wondering-am I at the end of the road (until new technologies arise?) I would like to know if anyone else had this experience… I.e. that the musculature and structure of your hip is malformed due to bad development and atrophy?/ Has anyone else found the hip replacement NOT to help?

Has anyone found something that really helps them? Are there technologies out there to rebuild muscle,or to deal with internal structural issues? Basically, I’m open to all ideas!

I am very lucky that I can still walk and that I manage my life in a relatively normal way. But the pain does get worse as time goes on, and I find more and more parts of my body hurting- and I’m only 28. I find myself very afraid of the future and where I will end up.

Thanks in advance for all of your thoughts and advice, and thank you to the other people who have posted their very personal stories. This website has given me a forum to ask my questions and allowed me to feel included in a community of people who really understand and share my experiences.





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May 1, 2020 Sarah

Sarah

I am a 22 year old female runner who was diagnosed with hip dysplasia April of 2015. I had my RPAO paired with a arthroscopic...

I am a 22 year old female runner who was diagnosed with hip dysplasia April of 2015. I had my RPAO paired with a arthroscopic labrum repair. After my diagnosis, I was scared, sad, and confused, but reading other patients stories really helped. So, I decided to share my own story in hopes of helping others through the journey of hip dysplasia.

January 2015: The pain begins…
This is when my journey began. I was a huge runner and had been training for a half marathon in January. Throughout training, I felt an uncomfortable pain in my upper right hamstring, but played it off as a sore muscle. I finished my half with a huge PR, but the pain was much worse.

April 2015: Time to see the doctor…
After seeing a sports medicine doctor for the pain I was experiencing, he did not see anything wrong. He gave me stretches to do and told me I could continue to run. So, I decided to go through with my half marathon on April 12, 2015. At mile 8 of this race, the pain moved to my hip and it slowed me down almost to a walk. It felt like my hip was catching and popping out of the socket and was EXTREMELY painful. My mom and I researched doctors who specialized in hip pain, and ended up scheduling an appointment with a doctor in Colorado.

After X-rays were taken and angle measurements were recorded, I was diagnosed with hip dysplasia. I was told that I could try physical therapy but that there was little to no chance of getting better and being able to run again. Or, I could do a PAO surgery in which they would actually fix the bone structure and there was a very, very good chance I would fully recover and be back to activity without limits or pain. I was sent home with a big decision to make and plans to have an MRI to see if there was any damage to the labrum in addition to the hip dysplasia.

May 2015: MRI results are in…
I had the MRI done and went back to the doctor in order to discuss the results. The labrum in my hip was, in fact, torn, and would require additional surgery to repair it. At that point, it seemed the only way I would be able to run again and avoid a very premature hip replacement would be to go through with the PAO.

The doctor specialized in arthroscopic surgery, so the labrum was right up his alley. Yet, he referred me to another physician in Colorado to do the PAO portion of the surgery. I met with the new doctor and he deemed me to be a perfect candidate for the PAO. I decided to do the surgeries one right after another on the same day rather than have them three weeks apart. And the surgeries were scheduled for August 25, 2015.

August 2015: PAO and Labrum repair surgeries…
On August 25th, I checked in at the hospital and prepared for my surgery. I opted for an epidural to numb the pain for the first few days. Dr. The PAO doctor performed his part of the surgery followed by the surgery to my labrum. Despite the doctor being optimistic about being able to repair my own labrum, he ended up having to use synthetic material to repair it because it was damaged beyond repair. And between the two doctors, this was the only thing that did not go routinely.

I was in the hospital Tuesday (day of surgery) through Saturday. The catheter that they had to put in was the worst part of the first two days. Something must have gone wrong with the insertion of it, because if anyone even got near it , boy did it hurt. But, because I had the epidural in, my hip was virtually pain free. Thursday morning the pain from the catheter became too unbearable and they took out the catheter and epidural simultaneously and switched me over to pain medication. It took a bit of time to get the pain meds to catch up with the pain, but once we found the right balance, I was good to go. Though that is about all I remember from the hospital.

September 2015: Weeks 1-4 post PAO
The first week was not the most fun I’ve ever had in my life. A lot of this week was spent in the hospital. When I was released on Saturday, I found out just how complicated everything had become. I was using a walker to get around at this point in time because crutches were just too unsteady. I needed a raised toilet seat to go to the bathroom and a shower seat for when I showered. I had compression socks on both calves and what I called “squeezers” on top of those to keep the blood flowing since I was mostly sedentary. As long as I kept the pain medicine pretty regular I was not in too much pain.

The second week I became a little steadier on my feet. I was able to use crutches occasionally under my parents’ supervision. Stairs were still out of the question. The pain was still under control and I was even able to decrease how much of the narcotics I was using. I hate pain medicine, so the sooner I could get off of it the better! When I would move around, I would feel pain. Not unbearable, but it was definitely there. It was mostly on the inside of my hip, which I later learned was one of the places where they cut it. The worst part of this week was the numbness and unusual blood flow in my right leg. Though, this went away around week 3 or 4. I was not able to lift my leg at all and pretty much relied on family and friends for everything at this point. Though, I tried to get out every day and walk outside. At this point, my walks were probably 100 yards, but let me tell you, 100 yards a week or so after a major surgery is more tiring that it seems!

At the 2 week mark after surgery, I went back to the doctor for a check-up. X-rays were taken and he examined them in his office. He was VERY pleased with the results and told me that my bones were healing nicely. He explained everything and answered every question I had and told me to continue to use the crutches non-weight bearing for another 4 weeks. I got the stitches out and was sent on my way. The labrum doctor was amazing throughout this entire process and I am so beyond thankful that I had him do my surgery. The rest of the third week was much like the second. I could lift my knee up slightly towards the end of week three, which felt like I just won the Olympics. My daily walk also increased in distance as my muscles and entire body were gaining stamina back. I was seeing the physical therapist twice a week and basically just trying to get range of motion back. The blood flow issues were less, which made it easier to sleep. I was also able to leave the house occasionally to go to the store or a friends house, but I did not last too long before I had to retreat back home and rest because I would get so tired. I was almost off the narcotics at this point and was pretty much just on Tylenol. This was also the week that I started getting more comfortable on stairs, which was great because I finally got to see my room!

The fourth week was even better than the third! I was completely off narcotics at this point and was very happy about that. I was able to go out to dinner with friends and family, though getting in and out of the car was still an issue. I had to have someone lift my leg into the car since it didn’t move itself. But overall, the pain was under control and my energy was coming back. I did bring a soft blanket with when I went anywhere because sitting on hard surfaces was not very comfortable. I also avoided crowds for fear that they would bump me on my crutches and I would fall and damage my hip.

October 2015: Weeks 5-8 Post PAO and the beginning of Weight Bearing
The fifth week was similar to the fourth. I was able to walk all the way to the mailbox on my crutches (about a quarter mile) which was a big accomplishment. My arms were getting huge from all the muscles I was building, but my right leg was visibly smaller. Mentally this week was one of the harder weeks because I was feeling so much better but still couldn’t really do much. I had to be careful not to put weight on my hip, which meant I missed out on a lot. Though, it was good that I finally wanted to do things again! After reading other patients’ stories, some of them cheated the non-weight bearing and started putting weight on it sooner than they were cleared to do. I stuck through and continued to use my crutches, putting absolutely no weight on my right leg the entirety of the 6 weeks. I honestly think that is one of the reasons my hip looks as amazing as it does now! So, if you’re reading this, please do what the doctors tell you and don’t cheat the system. The best part about the fifth week was the fact that it was closer to my 6 week appointment where I could potentially weight bear again!!

The sixth week was very exciting! I continued to see small improvements in how I was moving and could feel some of my muscles starting to wake up. I was not even on Tylenol at this point and had very little to no pain ever. I continued my walks to the mailbox and even went a little further. During this week, my left hip started to hurt pretty bad. I was warned that this was a possibility due to the left hip having to do ALL the work, but it definitely made things a little more difficult. Instead of having to worry that my right hip (the surgery side) would hurt, I had to worry that my “good hip” would cause me problems. But, the exact day, 6 weeks after surgery (October 7th) I finally had my appointment to see about weight bearing. The Xrays showed that my bones had healed abnormally fast, which I was SO happy about. The doctor was extremely happy with the results thus far. He said the coverage he was able to achieve was about as close to perfect as you could get and that based on my bones and how they were healing, I was cleared to weight bear!

The seventh week was so rewarding. In physical therapy, I was able to start strengthening my leg again. At this point, I was still using two crutches when walking, but I was putting more and more weight on each day! I could feel the leg getting stronger and there was no pain with any of it. My physical therapist was very pleased by my improvement and I can’t even describe how happy I was. By the end of the seventh week I was beginning to use one crutch around the house but continued to use two when I went out anywhere because it would still fatigue easily.

The eighth week I could see even more improvements. I am currently 8 weeks and 3 days post-surgery and am using one crutch to get around but no crutches in the house. When I don’t use a crutch, there is a pretty noticeable limp, but I am having no pain in the hip itself and have been told that the limp will go away as my leg gets stronger. My knee and foot are sore just because I am starting to put more weight on and they have to get used to that again, which will go away as my leg gets stronger as well. I visited with the doctor and he said everything looked great and that I was ahead of schedule. He originally gave me a 6-month timeline from surgery until I could start running again, and he said he is very confident that we can stick to that, if not be ahead of that timeline by a bit. In physical therapy, I am doing squats and step-ups, which I never thought I would be doing two weeks ago! I even went on a 2-mile walk today, using one crutch for most of it but taking small segments to practice walking with no crutches! I am in no pain, but my leg definitely feels a bit tired. Nonetheless, I am so proud of what I have been able to accomplish!

It was such a hard decision whether or not to do the PAO in the first place. The recovery is definitely not easy and this process has been extremely mentally and physically challenging, but I am SO happy I chose to do it. With very little to no pain a little over 8 weeks out, I am so incredibly pleased by the results of the surgery so far. The first three weeks are by far the worst, but after that it really gets exponentially better each week! The doctors I had were amazing to work with and truly cared about me and getting me back to running as quickly and safely as possible. From what I can tell, the surgeries have made my life so much better and I owe it all to my amazing doctors. I also can’t leave out my physical therapist, he did a phenomenal job getting me strong again. It is really nice to work with him because he is out of the same office as my other doctor and they talked frequently to make sure they are on the same page with my recovery.

I know I still have a long road ahead of me, and it could be even longer if I end up having to get my left hip done too, but I know in the end it will be so worth it. I often dream about that first run back, pain-free and worry-free, and I honestly cannot wait until that moment. But, for now, I will continue to be diligent about my physical therapy and abide by the rules that the doctors give me. Thank you for reading and if you or someone you know is in the position to have to get this done, know that you have support behind you!





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May 1, 2020 Clare

Clare

I’m a 34 year old, spinal nurse sister, with 2 children and 2 step children. I have been an active gym goer for 15 years...

I’m a 34 year old, spinal nurse sister, with 2 children and 2 step children. I have been an active gym goer for 15 years and believe keeping in shape to be important. I have always known I was born with my hip dislocated and that I had a splint or something on for quite a while as a child, as it wasn’t noticed until I was 6 weeks old. Throughout childhood and early adulthood I had no issues and it was never discussed.

Unfortunately my parents passed away before I turned 20 so I don’t actually have anyone to question about past events now.
Around 4 years ago I started having what I thought was lower back pain. I had xray and scans that turned out to be fine. I put it down to my career.
I stuffed along with amitryptaline at night and ibuprofen as required in the day but, around a year ago, decided I wasn’t happy to struggle like this at my age and saw my physio again who suggested the pain may be hip related. This suddenly clicked into place with me and upon returning to my gp I had a hip xray.

This, I was instructed by the doctors receptionist, was fine!!!!! I was devastated and relieved all at once.
I carried on but the pain was getting worse and I could now clearly define it as being deep in my hip and around my back. All I had to do to exacerbate the pain was a light gym workout or a lot of bending or sitting.
I went back to the gp and finally got to see an orthopadic doctor who looked at my past hip xray and immediately said I had hip dysplasia and that it was quite obvious from the xray.

She referred me onto a hip specialist who also said I have hip dysplasia on my right and also slightly on my left. He said he needed to refer me to a hip dysplasia specialist. I’ve been waiting 4 weeks now and pray they will help me.
I started taking tramadol 50mg as required 4 weeks ago. 2 weeks ago I was shunted from behind in a minor car accident and since my pain has trebled. I went to a&e who didn’t feel I needed xray just rest. I had to call in work sick and went to see my gp 1 week ago as the pain was crazy. She put me on 100mg tramadol 4 times a day. It helps with regular paracetamol and ibuprofen but I would rather know my outlook.

Importantly to me is what exercise is it ok to do? I get told swimming but that isn’t me. I’ve been heavily into training for years and enjoy kick boxing and lifting moderate weights. I want to know if I’m making hings worse by doing certain exercises (eg squats and lunges) or if the pain I feel afterwards can be managed as there is no damage being done. I may seem to be ridiculous here but exercise is so important to me. Both physically and mentally.
Can anyone advise or help? Tia.





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May 1, 2020 Fay

Fay

Hey everyone, I’m a 23 years old girl from middle-east. I was an active child and faced no serious injury or pain in my childhood....

Hey everyone, I’m a 23 years old girl from middle-east. I was an active child and faced no serious injury or pain in my childhood. But things changed in my 18 birthday, we went out hiking and as it was for me to always be ahead of the group I took my place, but as we were coming back I started to feel a severe pain in my right hip but I ignored it and went on. The day after that I was unable to go to school, I was in pre-university class so my mom thought it might be the stress of my final exams.

Anyway, we went to an orthopedist but he said it’s nothing and I was completely pain free after that for almost a year.
In the winter, the pain came back and we went to see some of top orthopedists in my country and they all agreed in me having hip dysplasia on both hips and needing PAO surgery! The shock and the grief for me was unbearable cause I’m the type of person who HATES to be in need of any help, and the idea of being on crutches for 3-4 months just sound like the world coming to an end to me! So I decided to forget all about it, and it worked 4 years for me, I continued to workout and dance and I was pain free and happy…

But things changed exactly last year, it was a snowy night, and I went out with my siblings for snow fighting…by the time I got back home I realized the pain is back! I had a week in pain again and I found out I should give up workout! Again I was mentally broken but this time I knew there’s no other choice but the surgery!! So I visited my doctor and planned my surgery for Aug 17th,the struggles and stress I faced before my surgery was HUGE, I overthinked about every detail, especially the fact that I will be in need of others help in the easiest yet most private chores!!

Anyway I did the surgery, they told me it took 7 hours, and my doctor said it was way harder than he thought it might be! I was on morphine for I guess 2 days and had no pain in my hip, but I felt nauseous and was unable to eat anything so they cut the morphine and started giving me pain killers instead. I was afraid to get rid of morphine because of the fear of pain, but it was nonsense as I felt no pain after the morphine too.
The only pain I had was in the venflon place on my wrist, it took me 2 days to make the nurses believe they should put it on my other hand and then I was finally relieved!! Though the mark is still on my wrist after 5 months!!

I was in hospital for a week and started to walk with a walker 2 days after the surgery (I only went to wc and back). The time in hospital was so boring especially because I couldn’t go to sleep just lying on my back! The days after getting back home was hard but I could feel that I got better day by day.
I’ve visited my doctor regularly after that, and the last time I saw him he said it seems like the surgery was a failure! He also said I should do the PAO surgery on my left hip this summer, and if I was still in pain on my right side he will do the hip replacement surgery for me… . I got sad when I heard it, but now I know the sadness and anxiety do no good to me so I just hope that things get better after my left hip surgery…

I wanted to know if there’s anyone here who had a hip replacement surgery and ask whether it worked well for them or not? Also feel free to contact me if you’re in the same situation and need someone to talk to! Thanks for reading my story. Wish you the best of luck in your own journey.





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May 1, 2020 Kristin

Kristin

It all started 6 years ago, years of discomfort, pain and limited mobility. The more active I became, the more the pain increased. After years...

It all started 6 years ago, years of discomfort, pain and limited mobility. The more active I became, the more the pain increased. After years of physical therapy and doctors, I had finally had enough. I decided to see a surgeon at the Hospital for Special Surgery located in New York. After many exams, including Cat scan’s, MRI’s and x-ray’s, I was informed about my condition. I was diagnosed with Hip Dysplasia.

For the first time in my life I finally had an answer about what was ailing me. Hip dysplasia was a condition I never heard of before. As I researched about it, I came across the International Hip Dysplasia Institute’s website. I learned so much about this condition and what the procedure would entail to help my condition. I was relieved to know, but of course, nervous at the same time.

I am 29 years old and I have had 7 surgeries in total including hip surgery last year. Four of those surgeries were hernia operations. It seems that because my hips were not working properly, my core (abdomen) was taking the blunt of it. My core was compensating and straining which led me to have multiple surgeries. I was informed that if my hip issue was discovered when I was younger, I would more than likely not have had the surgeries I that I did.

On July 29, 2015, I had a FO (Femoral Osteotomy) on my right hip. I was on crutches for 5 months in total and I am still doing Physical Therapy, 6 months post surgery. I am getting stronger each day and know that pain does not last forever. On February 23, 2016 I will be having a second procedure to remove the screws from my hip.

As I sit back and think that I will need the left hip done, EVENTUALLY, I am more knowledgeable about my condition and what to expect now. It was very helpful to educate myself about this condition. I am so thankful for the International Hip Dysplasia Institute for dedicating the time to help all of us through this journey. It is also wonderful that they are educating and researching ways to prevent this from happening to others.

To all of my hippies (people with hip conditions) out there, you are not alone! Thank you again to the International Hip Dysplasia Institute for making our conditions relevant and helping us through the fight. 🙂





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May 1, 2020 Jason

Jason

Hi, I’m a 37 year old male, middle child, and grew up in an active family lifestyle and played many years of sports. I was...

Hi,

I’m a 37 year old male, middle child, and grew up in an active family lifestyle and played many years of sports. I was a soccer fanatic starting at age 5 playing into college. My story started when I had noticeable pain starting around 14 but simply attributed it to hard workouts or some type of groin injuries so it was ignored. At age 24, the pain increased as did the recovery time especially at night and was forced to use meds to help reduce pain. I realized the hip pain endured through the years just wasn’t normal and went for professional advice. Yes, the doc’s wanted to perform the POA due to my age, activity, and prognosis.

However, my wife was pregnant at the time and I just couldn’t take the chance of not providing for my family if surgery went unexpectedly bad. Thus far, I’ve opted to endure the lifestyle changes, the pain, and avoid this risk. I now have three beautiful children but, am limited in our activities; I coach but without much running or kicking, chase the kids in the yard but not for as long as they want me to, and don’t go on long bike rides, or take long hikes into the woods. To date, I believe this is still the right choice though admittedly struggle with this decision during bouts of severe pain (mostly caused when I’ve pushed myself too hard).

Truthfully, my first hurdle was avoiding a deep depression and trying to remain positive. It has been extremely difficult to give up on the active/sports lifestyle but, I know if could be worse (just take a look around to find someone in a dire situation) so I am also thankful and fortunate. More recently, a new concern for me is my diet; Having drastically reduced my exercise is forcing me to take a tough look into healthy eating and weight management. I’m about 25 lbs overweight and feel awful about myself. In the next day or so, I’m planning to try my first ever diet, in an attempt to get back in shape and be happier with myself.

Every six months or so, I scour blogs and treatment sites hoping for a breakthrough or advancement such as longer lasting hip replacement parts but have yet to find what I’m seeking. I’ve decided to endure the pain and ultimately go with the hip replacement option, prolonging it as much as possible. I will note that I’ve never had a dislocation and believe that if/when this happens, that it will quickly drive me to a hip replacement decision. The path forward and priority for me is clear; my family and their future. The scary part of all this is that our children may encounter the same issues and I’m extremely sensitive to any complaints they have. It’s not clear what led to my circumstances and there’s still so much to be learned about this problem. I’ve had my children checked at birth and beyond though I’m very fearful that they too could be confronted with the same challenges we have all faced. Also, I don’t limit them on sports or activity. I’m prayerful that science and technology will provide us all with better options so the decision can be easier and with less sacrifice.

God bless!
Jason





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May 1, 2020 Karen

Karen

Hi, I’m a 39 year old female who has just been diagnosed with Dysplasia after a long history of over 30 years of problems. I...

Hi, I’m a 39 year old female who has just been diagnosed with Dysplasia after a long history of over 30 years of problems. I am very grateful that I have private healthcare, which in the UK, is amazing and I’m under a top surgeon in London.

However, due to the recover time (for both hips) and the horrendous looking treatment, I have asked for some other opinions as to why I can’t have bi-lateral replacements instead (as I don’t currently have arthritic hips), especially now the ceramic/titanium THRs have very little wear. So that’s where I’m looking for your help and stories of anyone that was able to opt for replacements instead of PAOs who didn’t have arthritis.

It all started when I was 9 when I started having pain in my knees. I was told it was growing pains. At 15, I was told it was attention seeking (as I used to run middle distance and either won, or suddenly slowed and colapsed). At 22 I had an X-Ray of my knees and that was clear (mmmm…). At 26, again, they found nothing. At 31 I was told “you probably have osteo-arthrytis” without even doing a bloody test. So for 9 further years, I suffered (wanting to be such an active person in my head!) until I was walking up stairs on all 4s. (I don’t think I need to go into other details about restrictions and pain as you’ve all suffered it!)

With no pre-existing conditions, I decided to get private healthcare and when I asked medical friends for the right surgeon to be referred to… they diagnosed me on the spot with Chrondomalacia Patellae (knees). I had no VMO muscle at all. My IT bands were extended and my cartilage cleaned up (I was left with 10% in my left and 25% in my right).

I began to be incredibly active after my knee surgery, even becoming a cycling addict and took part in a 300 mile ride in 4 days, just 6 months after surgery. However, the hip pain I was experiencing as well never went away… even after 8 months of Physio and over the next 3 years, got worse and worse to the point that after any form of exercise (and randomly without warning) it would bite me. It was also incredibly difficult to stand up after a seated position without aggressive pain.

So I’ve now been diagnosed (which was a shock considering I was expecting a bit of Physio!) and I have a left labral tear to boot. I’m now occasionally on crutches and I’ve penciled my first hip in for June 16, subject to not being told replacements will work!

Looking forward to some comments!
Karen
PS – Wonderful site and congrats on your recent donation!





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May 1, 2020 Thomas

Thomas

Having read others experiences I thought I would share mine of Hip Dysplasia. As a young teenager I was treated with physiotherapy and built up...

Having read others experiences I thought I would share mine of Hip Dysplasia.

As a young teenager I was treated with physiotherapy and built up shoes for turning my feet in. It was always noticeable the inside of my heels on my shoes wore away faster than the outside,like a wedge.

I did all I was told until I got fed up,and then just carried on without wedges as I did not like to look odd at school.

I had a very active sports life with squash and tennis and football.At University I took up hill walking and skiing.

From about 19 years of age I got more pain in my left hip,noticable after walking and skiing. I ignored it for around eight years until after one ski holiday I genuinely thought I may have something nasty like a tumour as the pain was pretty bad and I was struggling to walk.

I went to see the GP who thought I’d probably strained the hip,but recommended X-rays.

I looked at the X-rays(I am a vet) and realised immediately my hips were dysplastic like a German Shepherd!

I was referred onto an orthopaedic surgeon and give the option of surgery or wait for a total hip(I was 28yrs old by now)

I elected surgery and had a rotational wedge osteotomy in the femur and a Bosworth Shelf(a piece of bone was chiselled off my pelvis and slotted over the acetabulum to cover the femoral head.

I had to be egg shell weight bearing for three months and ended up having five months off work as I was involved in farm work.When I returned to work I had to use the cows to lean on as I went around pregnancy diagnosing them.

It took a couple of years to regain confidence after the surgery and I thought I had made the wrong decision for a long time.

Well to cut a long story short I am still on my original hips,I have skied each year after a few years off at the beginning,I walk regularly and run the occasional 10 km race (and park runs on a Saturday am).

I do get discomfort if I do too much,but it generally goes off around 48 hours after excessive exercise and i stiffen up on car journeys and overnight.I am now 51 years of age and intend to keep going as long as I can.

I will always remember the first consult with the orthopod.He said well its not life limiting but you’ll need a THR in around fifteen years.

Realise it is an outdated operation no but I reckon it worked for me.





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May 1, 2020 Danielle

Danielle

I am 37 years old and was just recently diagnosed January 2016 with Hip Dysplasia and Osteoarthritis in my right hip. I have been suffering...

I am 37 years old and was just recently diagnosed January 2016 with Hip Dysplasia and Osteoarthritis in my right hip. I have been suffering with pain for the last 5 years since my daughter was born in 2010 but apparently was born with this congenital defect.

I was lucky to have made it through 32 years without pain. Although I did have a painless limp that many people would ask me about. I had no idea what they were talking about since I felt fine. It was really more embarrassing than anything else. After my daughter (second child) was born and the pain started, I just shrugged it off thinking it had something to do with childbirth. After 5 years passed and the pain was getting worse, I really couldn’t just ignore it anymore.

After all the ‘baby” was no longer a baby anymore. So I finally decided to go for the X-ray that told me exactly what’s been wrong with me all this time. I have to admit I freaked when I first heard the diagnosis. I kind of knew right away that it would mean surgery. I then went on my hunt for a good orthopedist and saw a couple of different doctors. The first one is a surgeon and he basically said that I either had to try to live with the pain or have the Total Hip Replacement surgery. Of course they always try to get younger people to hold off if possible because of the chance of needing to have a second Hip replacement later in life. I then went to another doctor for a second opinion who suggested the steroid injections. I had one and it was wonderful to be out of pain but unfortunately it only lasted about 5-6 weeks and here I am, back to square one.

I went back to the orthopedic surgeon because he is without a doubt the doctor I want to perform my surgery. I have heard so many great stories about him from people I know, he came highly recommended. He was very honest about all of the risks and what the recovery will be like and he doesn’t pressure you to make a decision. He doesn’t recommend getting too many of those injections though because of the increased risk of infection and to be honest, it’s not something I really want to have to do every couple of weeks.

So here I am at the point where I decide whether to continue living in pain or just suck it up and have the surgery. To be honest, my tolerance for the pain has definitely decreased now that I know how it is to live pain-free but I’m very leery of having such an invasive operation. I have never had surgery before, not even a C-section so this is quite frightening to me. I really have no issue with my age. I understand that I will most likely need to have another THR in the future. I would rather have a good quality of life now and not feel 87 at the age of 37. We are also planning a trip to Disney next year and I want to be able to enjoy that instead of hobbling around and not being able to keep up with my kids.
By writing this, I am hoping to make a connection with someone who is going through the same thing as me. I have great family and friends, a lot of support but nobody that truly can understand what this is like. I would also like to hear some success stories from people that have been through the Total Hip Replacement surgery.





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May 1, 2020 Frankie

Frankie

Hello All I am 23 years old and I was diagnosed with Clicky Hip (Hip displasia) when I was 3 weeks old I was put...

Hello All

I am 23 years old and I was diagnosed with Clicky Hip (Hip displasia) when I was 3 weeks old I was put in a cast for 3 months to help the bone sort of repair its-self. Unfortunately 16 years down the line I started to feel in a lot of pain when walking and getting cramp in my left hip when standing. I went to my GP to see if there was anything they could give me for my pain and he prescribed me with an anti-inflammatory, I also had tests to see if it could be what my Dad has which is ankylosing spondylitis. The test results said I was clear for this but it was laying dormant and anything could trigger this. I took the anti-inflammatory these but they done nothing for the pain. After another couple of years once I had finished college I had moved and was in more and more pain everyday. I had to do something about this.

I had a search up online for my symptoms and stated I had Clicky hip when I was born and it came up with Hip dysplasia. Once I found out the name of it I researched this to see what it was. Once I had done this I knew this is what I had. I then booked myself in to see my new doctor and see what they could do for this. I had tests and x-rays to make sure this is what I had and the outcome was Hip dysplasia in my left hip. My GP referred me to have a six week coarse of physio to see if we could build the muscle up around the bones to stop some of the pain but this only made it worse. I then lost heart in getting it sorted as my GP said this is all they could do or it would be a hip replacement which they wouldn’t do now because of my age.

I researched more after 2 years as I was determined there was something I could do. I found online an operation called the PAO (Periacetabular Osteotomy) I have looked in to this operation inside out and was very interested in getting this done. I then went back to my doctor to see if there was any chance in me receiving this. They referred me to a consultant that specialised in this region and I had more x-rays and scans. Once they had a talk with me about the operation and what they can do they referred me to a surgeon in London who specialised in this operation.

I asked all the questions I had and got all the answers I needed. At the end of the consultation he asked me if I wanted to be put on the list for the PAO. I said yes as I have wanted this for a long time. I got a letter 3 weeks later confirming I was put on the list and I called the hospital to see how long the wait would be they told me it looked like October but they wanted to talk to the surgeon and a manager to see if they could get an earlier date. On the 25th April 2016 I got a call and they said my operation day is 26th May 2016. I had a Month to get ready. I was so overwhelmed and shocked as to how quick they have fit me in. I am now scared and excited at the same time as these 3 weeks are going to go very quickly.

I just wanted to know before I do this has anyone had this operation and has this made any difference? All the reviews I have read are amazing results and I just wanted to know if anyone had this a few years ago and what the effect is now. I want to know that once I have children I will be able to run around and do activities with them.

Thank you





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May 1, 2020 Iris

Iris

Oh the pain! In 2012 thinking the pain was from carrying too much weight on my hips. I tried losing weight but I could not...

Oh the pain! In 2012 thinking the pain was from carrying too much weight on my hips. I tried losing weight but I could not exercise at all because of the horrible pain going from my back to my legs. I was first diagnosed by a rheumatologist. I had figured it was just arthritis and x rays later… congenital bilateral hip dysplasia. At first I figured I’d lose weight to alleviate the pain and limp. I worked through the pain and kept working at my Housekeeping Coordinator job at a hotel. This involved a lot of walking and running up and down stairs. I had terrible insurance so I settled for terrible doctors.

I’ve been on high doses of Ibuprofen, Naproxen, Etodolac, Tramadol, etc. and they still have not helped with the pain. One day I collapsed in a stairwell at the hotel and subsequently quit because I could not take the pain anymore. I was able to stay home for a while. I went back to my child caring job and that too became to demanding. I also ,as a result of the pain from the hip dysplasia and osteoarthritis, developed fibromyalgia. This comes with wide spread pain, pain at tender points, fever/chills, joint pain, etc. I would cry myself to sleep at night.

Fast forward and at 36 (with my now husband’s great insurance and prayer) the first orthopedic surgeon and I thought I was too young for hip replacement. He gave me crutches and more medication. I went to get a second opinion and was told the hip replacement would be my best option considering the pain and severe limp I’m living with. My hip replacement surgery (right hip) is scheduled for May 11th 2016.

I have shared my story with detail because I want to let whoever is dealing with the pain (yourself or a loved one) that you are not alone in this. Don’t settle for crutches and etodolac like I did. Get a second or even third opinion. We don’t deserve to live with so much pain. I will keep you posted about my journey.





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May 1, 2020 Samantha

Samantha

My journey started when I was diagnosed with CMT (Charcot Marie Tooth) in the 6th grade. My parents took me to a clinic in Michigan...

My journey started when I was diagnosed with CMT (Charcot Marie Tooth) in the 6th grade. My parents took me to a clinic in Michigan to do tests and see what type I had, Type 1A if anyone is interested. It’s a genetic disease so both my parents were tested and neither of them have it. The clinic put electrodes around my fingers and needles in my calves and shocked me until I flinched. They had me do puzzles to test my agility. I was then fitted with hard plastic leg braces which cut the back of my ankles and made me bleed. After a few months I was fitted for hard plastic shoe inserts. Life went on.

I joined color guard my sophomore year in high school. During a summer practice in my junior year, my hips locked up and I couldn’t move. Practice stopped and my dad came and loaded me into the car like I was a 2×4 piece of wood. We went to the hospital, they took x-rays, they sent me to Riley Children’s Hospital.

The doctor at Riley was surprise that I’d been walking let alone doing color guard. He tooks x-rays, gave me limitations and scheduled surgery for my right leg (January 2007).

The first two surgeries were to screw cadaver bone on top of the dislocated joint.

Surgery came with a month in a lay-down wheelchair (not able to bend at the waist or use the toilet), a month in a regular wheelchair (at school) and using left leg to get around with walker (at home), a month assisted walking with crutches and then physical therapy. January 2008, did all of that with the opposite leg.

Third and forth surgeries were done on the right leg to get out bone fragments. Then I went in and had the arthritis scraped away. Had a couple cordozone injections, didn’t last long.

Now I’m 26 and have been to quite a few specialists to have a hip replacement and none of them are brave enough to do the surgery. They say I’m ‘too risky’.

Don’t even get me started on shoes! You can see daylight thru the arches of my feet (from CMT) which makes buying shoes difficult and then adding my inverted hips… goodness! All of my shoes get ruined within 6months from wear-and-tear.

So that’s my situation.
I’m wanting a doctor to man up and do the hip replacements or someone to find me a shoe I can’t wear comfortably! Is that too much to ask??!!

I don’t even get a break from the pain when I’m sleeping! Constantly waking up to resituate.

I just want one pain-free moment.





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May 1, 2020 Paige

Paige

Hello, my name is Paige and I am 19 years old. I was finally diagnosed with Hip Dysplasia September of 2015. I have gone my...

Hello, my name is Paige and I am 19 years old. I was finally diagnosed with Hip Dysplasia September of 2015.

I have gone my whole life not knowing what could be wrong. I was very active in volleyball, soccer, softball, all kinds of things and just shrugged the pain off thinking it was due to sports. When I moved to Westfield, Indiana I quit all sports. I was the new kid going into my freshman year and decided I needed to focus on myself and school. All throughout High School I had this constant pain in my right hip. It began to pop every time I would walk or move from any position to another. I kept telling everyone it hurt but it kept being blown off like it was nothing. January of my junior year (2014) I finally went to the doctor to see what was wrong. The first doctor I saw told me everything was fine, that it is normal for a girl of my age to have what they called “snapping hip”. The doctor told me I would be fine, that he has seen hundreds of girls with this problem and only one had to have surgery (make that two). He wrote me a script for therapy for three months. After those three months were up I felt okay, and only went one more month before I had to find a new doctor because I knew something was wrong.

I went to this new doctor and he told me I tore my labrum and had too much bone on the cup part of my joint on the left side (not even the side I originally went to the doctors for). Surgery was scheduled for July 3, and that is where it continued to go downhill. I had an arthroscopic surgery to fix my torn labrum and shave down my cup. I had an awful recovery, I would throw up every time I would move and I even found out that I was allergic to my medicine (hydrocodone). I went through my next three months in therapy hoping everything would get better.

Right after I ended therapy I started noticing the pain in my right hip was back, so I went back to the doctors. More MRIs and X-rays to find the same thing, torn labrum and apparently too much bone on my hip again. Next surgery scheduled for December 16th, 2014. After I woke up from surgery and was brought back into my recovery room the doctor came in and said “this is a very common thing in dogs” (not sure why he told us that) Then my dad turned to me and said “oh so what kind of bread are you?” and my response was “the pretties bread you will ever see duh.” I spent my Christmas sleeping from all my pain medicine, not a fun way to spend it. I went through three more months of therapy (nine months all together so far) and again I was hoping everything would be fixed this time. Not much time went by before I realized I am not quite done yet.

I went back to the doctors to have more MRIs and more x-rays for this time to be told I tore my labrum again, and I had extra bone on the femur as well. Third surgery scheduled for May 8, 2015. This was the hardest one to recover from because it was right at the end of my senior year, I had projects, finals, even graduation. I took my first steps after this surgery as I walked across the stage to get my diploma. I again had three more months of therapy (12 months all together). I went to my last doctors appointment and I was told everything looked great, that it was going to be my last visit ever for my hips because nothing else is wrong or could go wrong, right in time for my doctor to move to L.A. I have never been more excited. I thought I was going to be able to enjoy summer and enjoy my freshman year of college, but unfortunately I was wrong, again.

I got to enjoy my summer pain free thankfully, then I moved to attend Ball State University. Around September 2015 I started to have worse pain. This time instead of just popping my hip would actually lock up to the point where somehow else had to come either bend it or unbend it for me bc i would lose the felling in my leg and the ability to bend or straighten it. I went to a new doctor, my third one already, and I got more tests done. I was then diagnosed with Hip Dysplasia. My heart dropped, I felt like all the other surgeries were for no reason, which come to find out they were. My old doctor should have caught the Hip Dysplasia, which would of saved me from three other surgeries. The new doctors told me that my old doctor made it worse by shaving down the cup because he gave me less coverage on my femur. My first PAO was scheduled for December 18th, 2015. I did not know what to expect, all I knew was that it was way worse than all the arthroscopic surgeries I had.Recovery has been hard, especially with the who numb patch on the upper outside thigh which is extremely sensitive. Today is five and a half months are my PAO and I am still on my long journey through recovery.

My left hip is still in question, it causes me pain but rarely. I will have my first doctors appointment for it in a few months, fingers crossed its good, but who knows. The doctor told me that I will know him the rest of my life because I will have a full hip replacement when I am about 30 years old.





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May 1, 2020 Rachelle

Rachelle

I am 40 years old and I was diagnosed today with right hip dysplagia. I had a Labral tear in my R hip that was...

I am 40 years old and I was diagnosed today with right hip dysplagia. I had a Labral tear in my R hip that was diagnosed by my orthopedic and he sent me to a specialist… they took X-rays and BOOM, new diagnosis. I’ve had problems with my hip for years, but have had 2 ACL surgeries on my R knee and thought the pain was related to the knee. I am apparently too old for an Osteotomy and too young for a hip replacement. But my question is wouldnt it be better to get a replacement now and have 30 good years and then have it redone at age 70, than to live in pain for 10+ years waiting it out??? Not sure just would like to hear what others who have gone through the same thing have to say. I have always been very active, athletic and the pain is dragging me down. I have 2 young boys and it breaks my heart that I can’t do things with them, heck I can barely get up our stairs. Any advice would be appreciated. I am going to start PT (again) and get another cortisone injection, but not sure if I can keep going like this much longer. Thanks for reading, any advice or thoughts are appreciated.





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May 1, 2020 Lauren

Lauren

My story with Hip Dysplasia began in July of 2014. My hip suddenly hurt, and it hurt really bad. The pain was constant … it...

My story with Hip Dysplasia began in July of 2014. My hip suddenly hurt, and it hurt really bad. The pain was constant … it hurt when I stood, it hurt when I sat, it hurt when I walked, it hurt when I ran … and it was not going away. My hip was constantly clicking and felt as if it was catching on something – especially when I sat for a long period of time.

For as long as I can remember, I ran almost every day. When I wasn’t running, I was kickboxing, playing soccer, spinning or checking out the latest workout fad. I had been playing co-ed soccer and at first attributed the pain to a hard collision with a male goalie – which later I discovered was not the case. To say the least, my 28-year-old body was accustomed to bruises, aches and pains. But this, this was different. My pain progressed over the next few weeks. There were some days where the pain was chronic and all-consuming – other days I felt okay – not great, but okay. There were a few days where the pain was debilitating making it almost unbearable to sit, stand or sleep comfortably. And, running was completely out of the picture. This, for me was one of the hardest things to accept. I knew it was time to see a doctor.

The journey to getting properly diagnosed was long and stressful. From the first doctor saying he had no clue what was wrong with me, to MRI’s and X-Rays, failed cortisone shots, physical therapy treatments and a drawer full of mind-clogging paint meds … it had been a long year. It was confirmed after an invasive MRI that I had a tear in my labrum on my right side. My next doctor then recommended me to an Orthopedic in St. Louis to schedule the repair surgery. When I arrived and once again did more X-rays I was told I indeed have a labral tear, but I had a much bigger overarching issue – a rare condition called Hip Dysplasia – to my surprise not caused by soccer, but by genetics. HD is a congenital problem, but the symptoms don’t always show up in infancy or childhood. Even though there is a tear in my labrum, fixing the tear would not fix the root of the problem. My lack of coverage over my femur was the problem. Over time, my joint would become arthritic much faster than a normal sized socket. Hip dysplasia includes a group of disorders that have deformities of the joint. Most commonly, hip dysplasia is characterized by a “shallow” socket that does not adequately cover the femoral head.

So yes, to answer your question, like many dogs and many babies … I have hip dysplasia. The doctor then told me I was an excellent candidate for Periacetabular Osteotomy (PAO) surgery (My first reaction was, what the **** is that?) So to give some background, PAO surgery is a hip preservation surgery. This surgery involves cutting the pelvis around the hip joint and shifting it into a better position to support the stresses of walking. After the hip is re-positioned, it is held in place with screws until the bone heals. The nurse also mentioned it has the most difficult recover of any orthopedic surgery … awesome.

Even though the surgery sounded extremely invasive, has a very long recovery and sounds, well terrifying – I went ahead with it on July 9, 2015. I strongly believe the positives have outweighed the negatives. I had a 4-day hospital stay and three months off work to recover. The long road to recovery consisted of 4 weeks of sitting in a recliner watching Netflix, learning to walk again with a walker to crutches to a cane, and finally completing 6+ months of physical therapy. I was off crutches by my 30th birthday in October, and that was my big goal – I didn’t want to be a 30-year-old with a walker, I felt old enough as is.

Recovery was not easy, not only physically … but maybe even more so mentally. I was very lucky to be surrounded by family and friends that visited, cooked, sent gifts and were willing to be chauffeurs for me for a few months. It meant the world to me they were there for me – even though I know I was not the most pleasant person to be around.

All and all, the year of big struggles and small successes, was more than worth it in the end. One year later, I have gotten back to an active lifestyle and am no longer constantly bothered by pain in my hip. I no longer dread a long car ride, store my favorite pair of heels in the back of the closet and experience pain from walking around the mall for too long and/or sitting at my desk at work for too long. Even though I am not able to run the mileage I had grown accustomed to, going through the difficult experience has made me really appreciate the things I am able to do now pain-free, turns out low-impact activities like biking, yoga and walking aren’t so bad after all.

Going from being extremely active and healthy to being in constant pain, to undergoing three hip surgeries in the past two years has been quite the whirlwind. My scar – something that at first I was mortified of – I now see as constant sign of how I strong I am. I went through one of the worst experiences of my life, and persevered and overcame that challenge. I came out of it a stronger, more appreciative person, that sweats the small stuff a little less than I used to. I am glad I have that big, ugly scare to remind of that





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May 1, 2020 Jodi

Jodi

HAVE A QUESTION: I am 43, have left hip dysplasia that was diagnosed one year ago. Due to the loss of cartilage and deterioration of...

HAVE A QUESTION: I am 43, have left hip dysplasia that was diagnosed one year ago. Due to the loss of cartilage and deterioration of my joint, I have to have a THR. I have been getting cortisone injections, which have helped immensely. My first injection lasted 8 months. However, my second injection was three months ago, and the pain is coming back. Daily pain. Hurts to sit too long, and I sit for a living. Wake up with pain, always achy. I have pain in my buttocks, off-centered to the left, and I have some pain going down my leg now on the inside thigh that feels like a nerve pain (that’s the only way I can describe it). Are these symptoms anyone else has experienced?

My surgeon told us in August that I will need surgery “within two years,” and it is all dependent on my pain. Since I am young, we are all trying to wait as long as possible for the THR. There are so many factors I am considering as to when. I know there’s no crystal ball out there to say GO NOW, or WAIT, etc. But I really would like to talk to anyone who has a similar situation for advice. My mother had a left THR three months ago from hip dysplasia, but she is 68. Big difference in age.

Can anyone give me advice, info, their personal story so I have something to gauge my situation on? I am discouraged today because it’s only been three months, and the cortisone is not working like the first shot.

And to top things off, I am getting married in July next year. I am so worried if I wait, I won’t be able to walk down the aisle (beach wedding) on my wedding day. I’m not sure if I should wait, or just schedule the surgery.

The other factor that is huge is cost. I have a high-deductible health plan, and after meeting with my insurance agent, my costs are going up next year, along with everyone else’s. I’m afraid if I don’t get the surgery done at least next year, that I won’t be able to afford it in 2018.

Sorry for the long story. Can anyone help me? I am feeling so down right now and unsure what to do. Thanks in advance.





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May 1, 2020 Brooke

Brooke

Hello my name is Brooke. Im from Potter county PA. To start my story I was never diagnosed with DDH as a child nor did...

Hello my name is Brooke. Im from Potter county PA. To start my story I was never diagnosed with DDH as a child nor did I have any signs or symptoms as a child. I will be 31 March 2017. I was diagnosed two years ago with DDH. I went through much pain over a 10 year period.

When the pain began I was at work just walking normally and I stepped down and my right hip made a load pop sound and then it hurt awful bad. I eventually maybe a couple years later went to my family doctor as the pain was intermittent, like when I changed from flip flops to sneakers. My doctor did NOT to any sort of x-ray. He referred me to PT. They diagnosed my pain as a pinched nerve, still no xray. About 5-6 appointments went and as I had to pay out of pocket I could not afford to go any longer and my hip hurt worse then when I started. approx. 8-9 years later, after a pregnancy and being very large, it had put a lot of strain on my hips. My daughter was delivered via C section because my hips did not open up like then should have. Still at this time I was NOT diagnosed with DDH.
After the birth of my child my right hip hurt with NO relief. It was then I went to see a new family doctor about my pain and my story. Finally I found a doctor who listened. She immediately sent me for an x-ray to make sure there wasn’t damage done in the hip. Well a few days later I receive an urgent message that I needed to see an orthopedic surgeon IMMEDIATLY!!! It was only then that I saw my x-rays, and I about fell off the table. I seen a chipped off piece of bone in my hip and it looked as though my joint was ready to dislocate. It was then I was diagnosed with DDH. I cried my mother cried. Thankfully I have an absolutely AMAZING doctor who basically held my had through this whole process. He even went as far as showing my xrays to his professors from school over in the UK and speaking with a his doctor friend at Duke University. They all said wait as long as possible before a total replacement. It was def too far gone and the hip needed to be replaced. So April 11 2016 I had my total right hip replacement.
Also I went to see a doctor at the Philadelphia Children’s Hospital to see if he could preform the Hip Preservation Surgery for my left side. He advised me to get my replacement first so that I would have a strong hip to recover on. Im ready now to go back down to Philly and discuss surgery.
So in all this has been a very scary ride for me and my family. I have had my daughter x rayed and she is clear of any dysplasia as now. Thank you for reading about my story. If you have any questions about the journey please feel free to comment!

-Brooke





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May 1, 2020 Cara

Cara

I first began experiencing hip pain when I was 17 years old and a junior in high school. I was trying out for my varsity...

I first began experiencing hip pain when I was 17 years old and a junior in high school. I was trying out for my varsity soccer team when I felt that I had pulled my hip flexor. I took a few days off from practice to wait for it to heal, but unfortunately it never got better. I would wait a few days then try to run, and the same pain would always return, quickly becoming sharper and deeper into the joint. I saw a doctor in NYC, and he diagnosed me with a labrum tear in my right hip. I had my first hip arthroscopy done in the winter of 2008.

When I went back for my 6 month check up and complained to the surgeon that I still had the exact same pain as before the surgery, he looked at me like I had four heads. He told me it was impossible and sent me away. I don’t think I did any real activity for two years after that, but slowly broke into swimming, which seemed to make my muscles stronger. Eventually I did get back into running (approx 3 miles, 5 times a week) but that took about 3 years post-surgery.

After college graduation in 2012 I got into crossfit, and within a year of starting that, my hip pain came back in both hips. I went back to the same surgeon (stupid me) and he did more MRIs and told me there were still labrum tears in my left and right hips. He said that the surgery I had in 2008 was now more advanced, and they were more aggressive with shaving down the head of the femur so it did not tear at the cartilage in the hip. I had another arthroscopy on my left and right hips in 2015.

The pain stayed the same, originally only occurred when I was active (I limited my activities significantly) and day-to-day was manageable. But over the following months pain kept getting worse and became more day to day. Now I cannot walk around the block with my mom or go on hikes with my boyfriend. And I am a person who LOVES to be active, running or biking or weight lifting are all out of the question.
I met with a new doctor a few months ago (approx September of 2016) to look again at my labrums. He took a good look at my hip and mentioned that the joints appeared to be anteriorly rotated (basically, they were pushing forward out of the socket) so that the socket was not fully covering the femur. He referred me to a specialist who is supposed to be the best. The new doctor diagnosed me with mild hip dysplasia (you wouldn’t see it on a regular xray) and recommended me to have a PAO so that the femur is correctly seated and protected by the joint. He says my illiopsoas and hip flexor pains happen because they are essentially taking over the role of the hip socket and “holding” my hip joint in place. It seems like a believable explanation for my horrible tendon and muscle pain in the front of my hip and in my groin.
I’m now scheduled to get this PAO surgery on my right hip on August 8th. I need to wait a few months due to work obligations and needing time to pray about such a serious surgery. I have seen way too many horror stories on the internet of people who got worse from this surgery, and cannot function day-to-day without horrible pain. My pain is bad, but the devil you do know is better than the devil you don’t! Hoping that someone might have had a similar experience as me and might have some advice. Thank you!





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May 1, 2020 Missy

Missy

Hello all. Growing up I had no idea that there were others like me. Except for a story that my doctor told my mother about...

Hello all. Growing up I had no idea that there were others like me. Except for a story that my doctor told my mother about a little village in Italy where all the females born had Left hip dislocations. The WWW has created a kinship those like me would otherwise never know.

Mine wasn’t discovered until I started walking. There’s a picture of me standing on our front porch, right foot flat, left foot on my toes. Decades of walking on my toes (I’ve always hated shoes!) changed the shape of my foot. My heel never touched the ground.

I was referred to a doctor and I have no doubt he saved my life. Without him I would have been in a wheelchair forever. I had my first surgery at 18 months old and 1, 2 or 3 a year for the next several years. I taught myself to walk in that frog cast with the bar between my knees, chest high and to the toes on the left, to the knee on the right. I went up and down stairs and outside and crawled on my swing set. That was my normal; I didn’t know any different. When I was 5 I fell off that swing set and the cast snapped my leg under my knee. After that it was full casts on both legs. Plaster casts in the humid summer were no fun! I had a few procedures where he had to break my femur and rotate it because my left leg kept turning in. Pins were put in to hold it in place. And pins managed to find their way out! My mom totally freaked when I showed her the pin sticking about an inch out of my inner thigh. Straight to the hospital we went and I got to keep the pins. I thought it was cool.

I was born without a socket and what little ball I had was flat. All those many surgeries were to try to keep it in place. By the time I was 13 my leg length discrepancy was 3.5 inches. Grade school will forever be associated with built up Saddle Oxfords – black and white and tan and brick. I’m pretty sure if I ever see a pair again I’ll collapse in terror. My leg also didn’t get as good of circulation as the right so it is smaller around too.

I had a reprieve for about 6 years or so and when I was 13, the summer after 7th grade, I got my first hip replacement. A month of traction to stretch the muscles then a surgery that was pure hell. Muscles had bunched and tangled into that empty space and had to be cut out before the appliance could be put in. I think I screamed for 3 days straight. No amount of pain killers would touch that pain. Doctors came from all over that hospital with suggestions and nothing worked. Only so much morphine you can give a 70lb kid before she stops breathing.

After that the length difference was about 2.5 inches. I put lifts inside my shoe – no way was I ever wearing another build up shoe. When I was 18 – happy graduation! – Doc took out 2 inches of my right femur to make my legs more even and try to alleviate as much future back trouble as possible.
I had my son 13 years after that first hip went in. I tried natural but after a day or so (that’s a whole another story) he came C-section. Hip #1 lasted for 3 more years until I fell on ice and snapped the fake ball off of the fake femur. Of course we didn’t know that’s what happened because I lived on pain pills for a year between the fall and the surgery. Doc told my husband that after surgery #2. So I’ve had hip #2 for 20 years now. I had to have some replacement parts – new ball and liner – in 2012 with the hip genius that my Ortho practice acquired just weeks before I went in with pain. I was so fortunate – this is the practice I’ve gone to my whole life and after my second doctor retired they informed me that there was no one in this area qualified to touch my hip. And yes, I live in the burbs of a big city. That made me feel so special. Not!
My current status is constant pain. The back pain started probably 15 years ago. I have always walked with a limp – first because of the length difference then add to that the loss of most of the muscles that you need for stabilization. Without Celebrex, Fentanyl and Hydrocodone my back pain level would be 20 out of 10 – jump-off-a-bridge excruciating. And ever since the 2012 surgery the entire hip area has joined the pain circus too. The general consensus is that upwards of 20 surgeries is too much trauma to one area and pain is now a permanent fixture.
We need to make this hip last as long as possible. I now have just a bit of femur bone left – what’s clinging to the railroad spike-looking implant. Another replacement would mean I’d have an all metal thigh bone. The left side of my pelvis is paper thin and next time cadaver bone will definitely have to be grafted.
But I’m still walking, I wear 3 inch heals if I want to – and since I’m 4’11” I want to – and I try to stay as up-beat as possible. You can only live one day at a time.





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May 1, 2020 Missy Smiley

Missy Smiley

So my story really started as a child. My hip would pop out of place and I couldn’t walk so my mom would reset it...

So my story really started as a child. My hip would pop out of place and I couldn’t walk so my mom would reset it and I would keep going. I was very active in sports and really had no pain specific to the hip just had really bad leg aches. I went into nursing and the leg pain continued but I thought it was from being on my legs for 12+ hours. I changed shoes and wore compression stockings…and ate ibuprofen until I developed an allergy to it. After some time as a bedside nurse I went into nursing education which required less time on my feet so I don’t really remember having too much pain for some time.

I had two kids and decided I really needed to exercise so I got into running…well this did me in! The pain started deep in the hip. My mom is an orthopedic nurse so she gave me advice but eventually said I really needed to come in and let them X-ray my hips (remembering how my hips popped as a kid). So I did…and the journey began. The PA at their office immediately diagnosed me with a labral tear and hip dysplasia. She said I would need surgery and sent me to a hip preservation surgeon. He said I had a FAI along with the tear and he would repair the tear, fix the impingement and shave some of my femur down. Trusting him I went forward with it…the pain after surgery was horrible! I went back and he of course said it didn’t make sense. He ordered another MRI because I pretty much demanded it and it was normal so he really thought I was crazy and at 6 weeks post op said I just needed pain management and wanted to refer me to a pain management specialist. I of course refused but did later seek one out on my own for an injection in the hip. Thankfully this physician listened to me and told me something had to still be wrong in the hip and so he sent me to a University Hospital to a hip preservation surgeon there. This doctor immediately said it was the instability in my hip because of the dysplasia and the surgery I had just made the instability worse which is why I had increased pain after surgery. I just cried…cried because of the frustration of suffering for weeks after surgery, cried to finally have an answer, and cried because I knew this meant more surgery.

This surgeon said he only did scopes but had a partner who specialized in PAOs which was what I needed. I asked him why not a THR and he said I was too young. So we made the appointment with the next surgeon at the hospital. This doctor is amazing. One of the best bedside manners for a surgeon with his reputation. He agreed a PAO was what I needed. So in August of 2015 I had a right PAO. The surgery was hard and the recovery even harder. I was hoping for the great outcome of others with whom I had networked, but unfortunately I sit today May 2017 still in pain. I finally after over a year of PT stopped as it would only help for a few days (after dry needling and manual therapy). I went back to the pain doctor I saw that sent me to Duke and he has suggested a pain stimulator. So on the 17th of this month I will trial a pain stimulator. I am still numb on my lateral thigh and so we aren’t sure the pain isn’t nerve related. My entire leg often aches as well as does my lower right back. I’m so tired of living in pain as I know many others who have suffered through this are as well.

I did go in December 2016 and have the screws removed hoping that would help and the fellow that was with the doctor who actually made the comment that if my pain didn’t get better I was on the road to a THR. He was actually the first to mention this and so now it plays in my head…should I investigate having a THR? Would I just be adding to my pain even more?? It is so frustrating but thanks to forums such as this and other support groups I know I’m not alone! Even though the surgery did not fix my pain I have to say this new doctor has been amazing walking through over a year with me continuing to treat me and see me whenever needed. He has injected my psoas several times as well as the hip, but he can’t seem to figure out the issue. I am thankful though he has never given up on me and pray one day we figure this whole thing out!





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May 1, 2020 Darryl

Darryl

I am a 45 year old Male from England who was diagnosed with Hip Dysplasia 13 years ago. My symptoms began with lots of lower...

I am a 45 year old Male from England who was diagnosed with Hip Dysplasia 13 years ago. My symptoms began with lots of lower backache which I simply put down to playing too much Football (Soccer) which I had been playing since I was old enough to walk. My GP (Doctor) sent me for an X-Ray and when I went to see him to get the results I was totally amazed and shocked with what he had to say. I was expecting just a basic diagnosis of nothing severe, to my shock when he mentioned the condition I had never heard of it and obviously asked lots of questions.

He immediately informed me that I would need a total hip replacement but not for many years or at least not until it got to the stage where I was in too much pain to continue. During the past 13 years I have had numerous days and weeks where I am in pain and discomfort I guess like lots of other people on this website. I have never received any injections I only take mild painkillers when the discomfort gets too great.

Over the past 4 years I am noticing that I am having more flare ups than ever before. I am currently on my 12th Day of real discomfort in the thigh/knee joint. I am finding that driving is a major problem with this condition it really does aggravate the pain. I go to see my Dr every 12 months at my local hospital where I am always sent for an x-ray to see if there has been any change from the previous visit. I am always being advised that I am possibly too young for a THP as in England we are led to believe that the replacement will only last around 12-15 years.





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May 1, 2020 Stephanie

Stephanie

My name is Stephanie and I was diagnosed with Hip dyspepsia at age 25. I did not consider myself an active person when I was...

My name is Stephanie and I was diagnosed with Hip dyspepsia at age 25. I did not consider myself an active person when I was younger, unless you count Netflix marathons and long walks to the fridge. But I was healthy. I enjoyed gym class in High school and loved going on random hikes in the mountains in the weekends, nothing extreme of course. I was as normal comes till I found out I was pregnant. As my belly grow so did I because I took full advantage of the whole “eating for two”, but instead of eating for myself and a baby I was more eating for myself plus an Olympic athlete. Shame on me, I know. With everything that was going on with my body and the weight gain, when my left hip started to hurt and I began to waddle it was just because I was pregnant.
Six months after having my first born I was still waddling and having the mild pain in my left hip, I kept thinking to just give it time and it will go away along with everything else my body was doing because of all the hormones changing. After a year I knew I was over weight (more like obese) but that something was just not right so I went in to my doctor. Of course they said what I thought they were going to say, I was overweight plus caring my child everywhere, my hip was going to hurt. So I went on a diet for 6 months, no exercise and lost 40 pounds. I was feeling great and wanted to lose the last ten plus look good so I started to do moderate exercise, starting slow then adding every week. That is when the pain really kicked in.
As I increased my exercise the pain just keep getting worse and running was out of the question. So I visit my doctor again, this time they sent me to PT because I most likely didn’t have enough muscle on my upper legs. I was sent home with some exercises, mostly squats and lunges which just made it much worse. When I went back with that update they finally decide to take an x-ray. The PT thought I had a bone spur on the top of my femur and said I needed to consult an orthopedic. There I was told I did not have a spur but had hip dyspepsia but they had to refer me out to a specialist. I made the appointment not believing I had what I only heard dogs having because of all the misdiagnoses. But surely I did have it and the lovely doctor there did me a grand favor and showed me that it was not only my left but my right as well, I couldn’t walk for a week afterwards without extreme pain. After much discussion and lots of research I came to terms and started the very annoying part of talking with my insurance about financial situations, dealing with my work schedule and of course arranging who was going to help me with my now two-year-old.
Scared because of everything that was involved with this. It was all about timing with my new insurance, time-off from work, and when my wonderful (can’t thank him enough) brother-in law was flying out to be my amazing live-in nanny/help.
Once I had my MRI and CT scan and went in for the last consult before the surgery the surgeon gave me some bad news. He let me know that my situation was not good, in fact the only reason he was going to go for the surgery to correct the hip instead of a hip replacement was because of my age. I have done so much damage to my hips that I needed to have a surgery before the surgery in order to fix the situation. I was given strict instructions to “take it easy” (what in the world does that mean?) but the specialist I was so very lucky to get was booked out for two and half months so I took it upon myself to cut out on all pain meds and if it hurt to just stop moving as my interpretation of “taking it easy”. This is easier said than done with a toddler.
In the time before the surgery, I read as many stories, tips, and information about this type of surgery. Thanks to everyone that had put their story out there I had an idea of what I was getting into and also was fully equipped with a walker, crutches, toilet seat, shower seat and a suction cup handle to hold on to something, a recliner with extra tilted cushion with a side table with all I needing in arms reach, ice packs and heat pads, underwear that I cut on both sides and put Velcro on them so I could take them off and put them on without having to bend, lowered my bed so I could get in and out easier, made and froze food ahead of time, had books & movies and more. I made sure I arranged everything with my insurance company before I was medicated and had back-ups for my back-ups regarding help from friends and family.
When the surgery date finally came, I was so nervous I didn’t sleep the night before. I went on a liquid diet for two days before to make sure I didn’t have to bad of a digestion problem, I have been traumatized by the c-section surgery. But the first surgery wasn’t so bad. I had a scope done and went home the same day. It was almost a good thing because it was a preview of what I was going to have to start doing since I couldn’t put weight on my left leg/hip and couldn’t bend all the way, yet I wasn’t in pain so it was easy to figure some things out. When the PAO happened the following week I had to stay at the hospital for six days.


They did tell me four to five but I had a bit of a complication with a sciatic nerve that didn’t let my left foot move making it hard to get around like I should have but with a third surgery to correct that I started to slowly be able to pick my foot up and go home where I could put clothes on instead of just being in a hospital gown and sleep all I wanted without being woken up to check me. I did miss the room service for food. Once home I was very tired all the time so I napped most of the day and night. Didn’t get quality sleep since I always have to use the bathroom or just move to keep conformable. It was a lot of doing nothing but healing and when I did move around it was draining. Dresses were my best friend since putting on socks or pants required a second person and it was a lot faster to use the bathroom which (because of all the inflammation) was always hard to hold in for evens seconds.
Returning to work was overwhelming at first since it was then when I realized how slow I have become but with PT and just taking it easy, it all went fast. Once I was able to really start walking on my own the crutches were more annoying because in my mind I didn’t need them but the limp I would do after a minute of walking without them reminded me that the PT knew best and I should just listen to their instructions.
I was upset at first when I found out they couldn’t do both hips at the same time but it made sense why it’s not possible. The left hip felt so great that I was ready to go ahead 5 months later and do the right hip. I already had everything and knew what it was going to be like, however, I think the knowledge of the time it was going to take to heal was overwhelming. With the first surgery, I just wanted to make sure I didn’t do anything to hurt myself. The second time, I had different fears/problems.

I couldn’t believe I was even more nervous for the second surgery. It wasn’t going to be any different expect for two things, the good part was that I now had a fully healed, working lift hip to ‘lean’ on. The bad part was it was winter time so falling was a lot more possible. The surgery went perfect, this time there was no complications and since I hated all the pain killers including the drip they had me on I ask to be taken off of all of it the day after surgery expect for the anti-inflammatory and aspirin, so I only stayed in the hospital for the PAO for three days then was off. I was feeling much better and not as scared to move around since I knew what I was allowed to do without hurting myself. This led me to grow impatient very quickly. It took me almost having a fall on ice in the back yard for me to realize that I need to slow down and take it easy. It felt like forever the second time around since I just wanted to “hurry up” and go to PT and start enjoying a now fixed body. It was so frustrating and I would get so emotional and didn’t understand why but it turned out that I was going through some depression and anxiety because of all the surgeries I had, my body was throwing some weird hormones around. With that knowledge I was able to talk myself through it and ask for help when needed. It was very hard to ask for even more help then I was already physically asking for. I reminded myself this was all for now, not forever. PT was a lot harder on me the second around since I they were not worried about my other side. I did exactly what they told me to do, nothing more – nothing less. This time around I kept track of my mini goals from being able to hold my leg at 90 degrees for more than five seconds, putting on socks, to not worrying about falling. It helped me see how much I was improving since I was so impatient. I took it one week at a time and to tell the truth I was in much better shape than I ever was doing everything PT was telling me to do.

Now all I have left to do is to go back to take the screws out because they do bother me but not badly and just make sure to keep flexible and active which I fully intend to.

What I would say really helped me was making sure I had everything I needed before the surgeries like all the equipment (walker, crutches, toilet komod, Velcro underwear, etc), arranging everything with insurance, making sure I had the help I needed from friends and family, sticking to a healthy diet and drinking tons of water that allowed me to heal quickly, and most important was listening to my doctor/surgeon and PT instead of doing what I thought I could/should do.





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May 1, 2020 Julie

Julie

I am amazed at how many stories on here are so similar to mine — so many people in their 40s who are having total...

I am amazed at how many stories on here are so similar to mine — so many people in their 40s who are having total hip replacements. I would never have thought that I’d be contemplating a THR at my age, but I am 47 and have been suffering through progressively worse hip pain for the last 4 years.

I walk with a limp, but it’s from a combination of pain and the fact that my leg lengths are seemingly about an inch different. The doctor did a hip to ankle scanogram to see if my femurs were different lengths (nope), but apparently my spine has curved, from what I have no idea, which is giving the appearance that my left leg is longer. If I stand straight on my right foot, my left knee must be bent. If I stand straight on my left foot, my right heel is an inch off the ground and I’m leaning left. (Side note: I was in the marching band in HS and we had to stand at attention (feet together, stand straight and tall) and I never remember having this issue with leg length discrepancy. It’s definitely onset in the last few years.)

I’ve done the physical therapy and cortisone shots (relief lasted for 2 months). An orthopedist diagnosed me with severe arthritis and hip dysplasia (shallow socket), said my cartilage was gone and I have bone spurs, and advised that repeated cortisone shots were only going to get less effective (yep, second one lasted 6 weeks and provided less relief than the first). He prescribed physical therapy again (went through PT first time in 2014) and said I needed to get my hip muscles in the best possible condition before he would consider doing surgery. So I suffered through the painful PT for 3 months. My muscles may be slightly stronger, but the pain remains.

I researched other orthopedists and got a second opinion on my diagnosis and treatment. This hip specialist confirmed the diagnosis, and said it was only going to get worse, so it was up to me how long I wanted to “put it off” – “it” being THR. This doctor is highly recommended, and she performs the anterior approach (no cutting muscles) excellent video here: https://youtu.be/MTJK9tdSsQY , so I’ve decided to do the THR next month.

Since I’m probably going to outlast the replacement parts, I asked her at my consultation about what parts need to be replaced. The metal stem, femoral head, and acetabular component are titanium and don’t need to be replaced – it’s the acetabular “liner” which is the polyethylene piece equivalent to cartilage, which can/will wear out over time depending on how much wear and tear you put on it. Easy peasy, right? Yeah, as long as they continue making the parts for that particular set of hardware. She warned, as they come out with new hardware and procedures for THR, they stop making the parts for your hardware. So I told the surgeon, jokingly, “ok, so I’ll just buy a spare liner and keep it in my safe deposit box until I need it.” To my surprise, she said “well, believe it or not, they have a shelf life and expire.” So much for my brilliant solution. So I guess I’ll just cross that bridge when/if I come to it. What other option do I have.

Very glad to have stumbled upon this site with so many similar stories. I’m even more confident that I’m doing the right thing and it’s not necessarily “too soon.” Mobility and quality of life NOW is what matters.





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May 1, 2020 June

June

I have suffered back and hip pain for most of my life (over 50 years) and despite many trips to my GP (I live in...

I have suffered back and hip pain for most of my life (over 50 years) and despite many trips to my GP (I live in the UK) and many ‘blind alleys’ during attempts at an investigation I did not get a diagnosis until very recently.  I have had one total knee replacement which has become hyper-mobile and so now needs further surgery, and the second knee was due to be replaced last year but fear drove me to cancel the op as I seriously believe that should that also become hyper-mobile I will be unable to walk.

Where the hips are concerned, during my most recent visit to the Consultant I was informed that because I had had a knee replacement (albeit an unsuccessful one)  a bone osteotomy – a possible treatment for the hip dysplasia –  was now out of the question. The Consultant felt that he was unable to make a plan for treatment until he had spoken to his team in order to get an opinion from a number of Specialists in the field.

I wondered if there are any other people out there who have had a similar issue, and also what people’s experience of osteotomy is?

I have found the site incredibly helpful and useful and it really does help to hear other’s stories. Many thanks.





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May 1, 2020 Rosie

Rosie

I was diagnosed with DDH at 9 months old. At the time I was close to be an early walker but I still loved to...

I was diagnosed with DDH at 9 months old. At the time I was close to be an early walker but I still loved to crawl around which was how my parents noticed I would drag my right leg along. Despite a family history of DDH and numerous assessments I wasn’t diagnosed until this point. The severity of it led to me being referred to a Hospital in London, a world renowned children’s hospital. Whilst I was in the best place, it understandable concerned by parents that had to be treated at a specialist hospital.

After 9 months of wearing the harness I showed little sign of improvement which led me being placed in a cast which meant undergoing anesthetic, again unpleasant for my parents. Fortunately after being the cast I was deemed strong enough to be without and before long I was walking! Every year for 16 years after I attended the hospital’s annually for my check ups which were always positive.

My point for posting is that I am now a fit and healthy 23 year old who lives life completed normally and even runs half marathons! Not bad for someone’s who’s life outlook was disability in the worst case scenario or life long hip pain in the best. I understand I am a lucky, but for parent’s facing this with their children, keep hope.





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May 1, 2020 M-J

M-J

I am a student physiotherapist in the UK, and I have bilateral hip dysplasia and have had recent surgeries. My left hip was diagnosed and...

I am a student physiotherapist in the UK, and I have bilateral hip dysplasia and have had recent surgeries. My left hip was diagnosed and treated as a newborn and ‘re-diagnosed’ at age 26 after some years of experiencing symptoms in my hip. It took a number of years after that and a lot of to-ing and fro-ing for me to find someone experienced enough to then correctly diagnose my right hip also (at age 31) and be able to treat them both. My journey involved many health professionals and sadly much conflicting information, I got the impression that there is not very much awareness or understanding of adult hip dysplasia amongst health professionals.

I had been treated as a newborn for a ‘clicky hip’ and my mum had been told that it was then resolved, so when I started experiencing symptoms in my early 20s I didn’t put 2 and 2 together. When I was eventually diagnosed I didn’t even know that this was called hip dysplasia! I thought nothing of it to begin with because my symptoms were so mild at first, I only felt pain when I was doing sport, so I just stopped doing sport for a while. I found it very difficult to find a consultant who could explain what was going on with my hips and offer me surgery to treat it.

I’ve now had pelvic osteotomies on both hips and I am in the later stages of recovery. It has been an emotional rollercoaster going through these big surgeries and doing the rehab for such a long time, but I believe it has been worth it. I’m glad I was able to have the surgeries so that I can delay having a hip replacement until later in life. I am able to walk more and more now.

My experiences doing so much rehab gave me the idea to change career into physiotherapy, and although I had to take time off for surgeries part way through, I am now in my final year and will soon be a qualified physiotherapist! I really hope to use my experiences as a patient to influence healthcare and raise awareness of this condition in adults.





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May 1, 2020 Suzie

Suzie

I am 44yrs old now and was only 18mths old when I was diagnosed with Congenital Dislocation of the Hip (RHS), I cannot remember much...

I am 44yrs old now and was only 18mths old when I was diagnosed with Congenital Dislocation of the Hip (RHS), I cannot remember much of the treatment as I was only small, but my mum has always discussed that time with me.

Last of 7 children I was trying to walk when my mum really noticed an issue, I initially would crawl dragging my right leg and when I did try and walk I would fall over and cry, a cry my mum could tell was pain. Despite numerous trips to the doctors, my mum was told that I was just a lazy chubby baby and that I would walk eventually. My mum demanded a second opinion and eventually I had an xray at 18mths old where they discovered my hip problem.

After being in traction, undergoing surgery to cut the tendon in my groin to allow my hip to move into place, two pelvic osteotomy and a final operation to remove pins, I was up and about by 4yrs old. Check ups took place annually until I was around 14yrs old. I have led an active life, selected to represent my school in 100m hurdles, years of aerobics, step, combat and long distance cycling sports, my hip has never stopped me from doing anything I wanted to do (other than long distance running).

For the past 3 years I have started to have a burning pain in my right buttock when I walk, sometimes this happens when only walking for short distances. I can also tell when the weather is on the change, I often will say its going to rain before it does as I have an ache down the back of my thigh. I have recently mentioned my burning pain to my doctor and she arranged an xray which showed little degeneration of the socket since my previous xray, however I have now been referred to a specialist in UK to discuss why my hip has started to burn. Would be interested to hear from others of my age on how their hips have faired at this stage in their adjust lives. Am worried to learn if I need a replacement.





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May 1, 2020 Jennifer

Jennifer

When I was born both of my legs were turned backwards at the hips. My left leg at a 45 degree angle and my right...

When I was born both of my legs were turned backwards at the hips. My left leg at a 45 degree angle and my right at a 95 degree. I was put in shoes that had a bar between them inorder to turn my legs back around. For two years I had to wear these shoes. My parents were told I would never walk. But I did, I lived a normal healthy life.

I was in my 20’s when I had my first child and how most woman have children naturally. Because my hips had shifted completely out of place I had an emergency c-section. My hips never recovered. Physical therapy, braces ect did nothing but cause pain. Now in my 30’s after two kids, I often find myself losing use of my legs.

I have pinched nerves in my hips and lower back, I have shrank in size. I live in pain and hurt every day. I am unable to stand most days, so keeping a job has been very hard for me. I have applied for disability, but the people who work there have no idea about hip dysplasia and what is can do.

Yes people can walk will help and there are minor treatments, but if you have it you know it never goes away. Its never truly fixed.





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May 1, 2020 Troy

Troy

Hello Fellow Sufferers,I am a 53 year old Japanese/American living in California. Yes, we have the best weather in the USA and thankfully it only...

Hello Fellow Sufferers,
I am a 53 year old Japanese/American living in California. Yes, we have the best weather in the USA and thankfully it only gets down to the 50’s, on an average cold night, which for us suffering from our condition know that cold is the enemy.
I was recently diagnosed with Hip Dysplasia, in both hips, after numerous trips to the Primary Care Physician, Physical Therapy, Rheumatologist, and finally a Joint Specialist who made this diagnosis. So now I’m in the exploratory stages of what to do next.
The Joint Specialist definitely recommends a hip replacement, at some point in my life. Of course being 53, it’s not the opportune time with the average 15 year lifespan for a hip replacement however, the opposing solution being constant pain and discomfort, I feel like it’s time to roll the dice and go for surgery.
I own my own business and travel extensively. In fact I’m headed to Geneva, for 2 weeks, and am a bit concerned if I’ll be able to endure without my PT close by but heck, it’s Geneva….I’ll manage. Cue violins…lol
My work is quite physical and requires my body to be in good, maneuverable shape. Lately, I can barely walk let alone bend down. My limited hip movement is really crippling me, at this point. I don’t need a cane or a walker but when I go shopping, you better believe a shopping cart is my best friend. I call it the walker in disguise. I’m sure a lot of you can identify with the feeling of being too damn proud to use a cane or walker, even if you have to hobble all over the place. It’s really humbling, having a physical handicap, isn’t it?
I came across this site in search of answers and thank God for people like all of you, willing to share your stories and experiences and for the creators of this Institute (Larry the Cable Guy, really?!). I truly believe in helping out your fellow man especially by sharing information and experiences. So thank you to all who have posted and unselfishly shared your pains and triumphs.
I hope to be a contributor myself, one day. For now I’m going to continue to absorb, as much as I can, and continue to pursue the best solution, for me. I’ve never had major surgery, before, and I know this procedure is done all the time but after reading the info, on this site, I realize that the hip replacement procedure somewhat specialized for our condition and that’s why I really want to make sure I understand everything I’m up against and how to best qualify a specialist to perform this procedure.
Best of luck to all of you and thank you for your generosity and time!





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May 1, 2020 Sonia

Sonia

20 March 2018 – 13 weeks post-op THR, left hip CHD at 46 years old based in Australia. Like me, I’m sure there are many...

20 March 2018 – 13 weeks post-op THR, left hip CHD at 46 years old based in Australia. Like me, I’m sure there are many hip dyplastic people feeling isolated who are seeking medical comparisons/experiences to ease their fears, this is the motivation for my current submission.

Diagnosed at 6 weeks I was promptly placed in plaster to my chest for 9 months. Ongoing (annoying) checkups throughout my child hood didn’t show much change as I grew (flattened femur head, shortened femur stem, shorter left leg approx 1cm) but I was told I wouldn’t be able to give birth naturally and would experience significant degradation by the time I was 40. My love of competitive athletics stalled at 15 when I began to experience pain running – I became a guinea pig for a relative studying acupuncture which helped enormously over the years!

Although determined to have a natural birth, I was unable to get into the natural birth centre at my local hospital and resigned to hiring a private midwife in preparation for a potential home birth (not my first choice but I wanted to avoid a C-section). Going into labour 3 weeks early with a breech baby I ended up with a C-section anyway. Needless to say I was even more determined with baby number 2. I lobbied the Government Health Department’s Head of Obstetrics for months and managed to get permission to go into the birth centre for a VBAC despite having had a previous C-section. Successfully giving natural birth to my daughter delivered by midwife with no doctors present, was a fabulous accomplishment! I was 28 years old at the time.

By 38 years of age, my subtle limp became an obvious eye sore attracting sympathy (and prayers) from strangers passing by. I began experiencing agonising sharp stabbing pains in my hip 40+ times per day – I was referred to the Head of Orthopaedics at my local hospital. But as a ‘young’ patient, and despite now being diagnosed with the highest grade of Osteo Arthritis, he wanted to hold off any surgery until I was atleast 50.

Then one day after a gym work out, something went ‘ping’ I could barely walk! Going back to the surgeon, he finally decided to perform a hip arthroscopy as an initial THR postponement measure. It took 10mths on the public health waiting list (yes we are very fortunate in Australia to have a free public health system!) before I was able to undergo surgery. It was only day-surgery, and despite still being very painful but easy keyhole procedure, I was released that afternoon.

I gingerly began to recover, I was on crutches for 5 weeks but the debilitating stabbing pains were significantly reduced – down to barely a few times a week!! This procedure in my case certainly helped enormously!! The process was simply cleaning out floating damaged cartilidge and I believe the removal inflamed synovial tissue in my case. This was enough to keep me going okay for another 4 years.

However, as a well travelled, active, adventurous person, I began to become increasingly depressed at my rapidly reducing activity levels. No longer able to run, dance, trek, clamber over rock pools, bush walk, stand for long periods (or short periods!) etc etc I did not want to wait another 5+ years whilst my quality of life was slipping away – I was still in my 40s!!

After several more consultations, I was finally put on the wait list for Total Hip Replacement in October 2017. 40 days later I received a phone call and was in surgery 6 days after that! With a brand new private hospital recently built in our region, I was referred as a public patient to undergo surgery in the private hospital with all the private perks! My fair sized solo room even had water views!

I had a posterior procedure, with a “Ferrari” of all prosthetics, with an extra 2.5cm (1 inch) added to my left leg which required the release of extra tendons and ligaments to accommodate the longer prosthetic. I experienced ‘fireworks’ nerve pain for up to 5 weeks post surgery in both my left and right thigh (my right thigh has a pinched nerve from surgery placement and resulted in numbness which is still there slightly today.) I had chronic lower back pain for up to 5 weeks as well but as soon as I got back to my Osteopath – the back pain immediately disappeared, and regular Osteo treatments have significantly disspated my ‘fireworks’ nerve pain and numbness in my right thigh too! The physio coming for home visits has also been incredibly helpful.

At 13 weeks, I am still not allowed to return to work until I have full capacity according to my rehab officer at work. And although I am still unable to dance, run or scramble over rock pools, I am progressing very well for someone with CHD.

I stood up and took a couple of steps at 16 hrs post surgery, I took short walks on a walker at 36hrs post surgery, I was off the walker by day 4, I could tackle stairs by day 8, I was off painkillers by week 6, off crutches by 7.5 weeks and now I’m on a walking stick I have been driving since week 8!

Now allowed to bend past 90 degrees and sit without cushions propping me up – I am comfortable sitting for longer periods, I can wash my own legs (mostly – my husband still washes my feet, I can’t reach there yet), I am getting around cooking, doing housework and doing more admin work for our family business.

I have no stabbing pains during the day. I can sleep on my left hip without pain. I don’t even need paracetmol anymore! Whilst there are a few natural challenges post surgery, so far I have been relatively pain free and progressing well (albeit slower than ‘normal hip replacement patients’).

I am grateful to have found the IHDI and know that in future I will require more surgeries, but I now look forward to a more fuller active ‘youth’ and an early retirement living/traveling overseas.





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May 1, 2020 Shayauna

Shayauna

I am a 20 year old college student. It has been over six months since I first injured myself. I was hiking a volcano during...

I am a 20 year old college student. It has been over six months since I first injured myself. I was hiking a volcano during my study abroad when I felt a severe stabbing pain in my groin. I initially thought I had pulled a muscle, but after days of limping and pain I decided to go see a doctor. I was sent to the hospital to check for a hernia. Soon after my arrival I was told it wasn’t a hernia and they wanted to check for bursitis. Long story short, I was discharged with painkillers, crutched and a diagnosis of bursitis. I was cleared to continue my travels for the next month and a half.

Once I arrived home to the US, I was in such severe pain I went to urgent care. This was the first time I heard the idea of a labrum tear. Unfortunately, I was switching insurances at the start of the new year so, I had to seek out a new orthopedic surgeon. This surgeon ordered an MRI to check for a tear and sent me to PT for tendonitis. After weeks of PT not working and my surgeon struggling to give me a definite answer on surgery, I got my old insurance back and went to a new surgeon.

It with with surgeon #3 that I found out I had dysplasia. I was referred to a dysplasia specialist to determine whether or not I needed a PAO. Today, I found out that I will be getting a PAO with a scope to fix my tear in the same surgery. My Dr. told me I need to lose 30 pounds before my surgery. I have no set date yet as we are waiting for an OR to open up with availability. My Dr. said this could be up to a 3 month wait and I am dreading having to be in such severe pain and pushing recovery back even farther.

I am struggling with hearing all this information about losing weight, getting a major surgery and having to start a new exercise regime to regain mobility. I have been on crutches for the last 6 weeks and was using a cane 4 weeks before the crutches. I have been on painkillers since my first doctors visit six months ago. My surgeon advised me that I need to go off of my painkillers 3 weeks before my surgery start in order to make my recovery better. He also recommended I start bicycling and doing pool exercises right away. I feel like my life is going in a full 180 flip.

Has anyone had similar experiences where they had to do a pretty significant weight loss in a small amount of time for surgery? I feel like I am crying all the time because I am so frustrated with how long this process is taking and recovery hasn’t even started yet. Nonetheless, I know that this surgery will be best for me in the long run and I am trying to stay as positive as possible throughout this process. With that being said, any tips, tricks or stories would be greatly appreciated.





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May 1, 2020 Natalie

Natalie

Hello, My name is Natalie and I am 27 years old. Approximately two years ago I was diagnosed with Bilateral Hip Displaysia and Femoroacetabular Impingement....

Hello, My name is Natalie and I am 27 years old. Approximately two years ago I was diagnosed with Bilateral Hip Displaysia and Femoroacetabular Impingement.

I was probably born with it and was checked apparently, but x-rays were never done. Growing up I was always tiny, I was rubbish at running and couldn’t get both of my legs to do breaststroke swimming, and I always thought that I was just useless at it! You would think a PE teacher might have mentioned something, they should really look into training them to look out for signs of problems like this. Anyway as it usually is if I wasn’t an active person I might never have noticed that I had a problem, or so I’m told, however I have always ridden horses and in university took things to a whole new level working on professional yards. At this point in my life I was riding probably 8-12 hours a week, on my feet from 8am to 8pm and hiking as part of my degree up to 20 miles a day on field work trips. I was really fit and loved it. Then everything changed overnight, im not sure what caused it exactly but I think it was a particularly naughty horse, I initially put the pain down to a groin injury that I treated with a private physio immediately. It just never got better, when I left Uni I had to leave the physio that was treating me and I just got on with life as best I could.

As time passed, things slowly just got worse, I took up Pilates saw chiropractors, physios … nothing really helped and I remember thinking that maybe I was being lazy or that I was just wasn’t as fit as I was. If I mentioned it at the GP’s it was easily brushed off as “you’re a horse rider”. The stupid thing was that if I had kicked up a stink at the start I wouldn’t have had to go through this for 6 years. I should have stood up for myself more and I kick myself for letting it happen. That being said it took an epic tantrum down the phone to the GP to get an simple X-ray, which showed the hip displaysia, I don’t think they would have believed me if I hadn’t had that come up. I would have been fobbed off again, even with the x-rays they tried to fob me off! It took an MRI scan to actually find out the cause of the pain, torn cartilage. Thankfully I live near to one of the best orthopaedic hospitals in the country, and they have so far been excellent.

Looking back I don’t think anyone including myself truly realised how bad things had gotten towards the end. I remember being constantly exhausted, sleepwalking through the day, the pain was such I don’t think I actually felt it anymore, I think my body switched it off or i was just too used to it. I would take a painkiller and not actually notice any difference. It was the sort of pain that crept up on you slowly until it was all encompassing and you can’t actually remember what life was like without it. The side effects of the pain were bad, I have always been skinny doctors have regularly told me that I need to put on weight and I have regularly been treated like I had an eating disorder. The stupid thing was I liked food! I would go through phases of not feeling hungry and phases of constantly feeling starving, nether the less I would eat three big meals a day and snack constantly but would not put an ounce of weight on (not that anyone other than my mother believed me). As it got worse my weight dropped even more and I started having problems with my skin and hair. By this point I knew what was wrong with me, it was just a case of getting through the next few months and hoping that the operations would help things.

I had my first hip arthroscopy with labral repair in October 2017 on my right hip and my second in February 2018 on my left. I went from sleeping 12 hours a day and still feeling tired to sleeping 7 hours and waking up bouncing off of the walls literally overnight. It was incredible and I have to say I found it very hard to sit still.

One thing I have noticed throughout all of this is that I am not very patient and if I could go back I would change things, I would have had my operation asap and not waited six months for October (I didn’t want to miss the summer riding). I would have stopped riding competitively the year before and riding all together when I was exhausted with just normal life. I would have not pushed myself so hard after the first op. I just felt so much better immediately and I desperately wanted my life back. It’s been a hard slog, even my mother has said that she hadn’t realized how bad I was, and it’s only now that I’m fit and active that it became obvious how sick I was this time last year.

Now three months on from my second operation I feel like I’m starting to get me life back, I’ve put on over 4kg, I have so much energy I don’t know what to do with it and I feel healthier than I have in years. I am not pain free however. My left hip is excellent and doesn’t cause me any real problems other than a bit of weakness, which I am still working on. My right hip which was done first is still painful and I hate to admit it but actually feels like it is getting worse. Don’t get me wrong, its better 80% of the pain I was in has gone. At my 6 month check they announced that if I am still in pain there are further procedures that they could do, terrifying procedures!! PAO (Periacetabular Osteotomy) google it and you will see, terrifying! Six months of recovery!! Who knows how long until I would be back on a horse. It’s safe to say I don’t want it, but as I’m sat here with my right hip throbbing slightly I’m also scared that I will go back to how I was! We came to an agreement to talk about it at my left hip six month check in July.

For now I’m just enjoying the sunshine and learning how to ride again. My position is completely different and I don’t want to fall back into old habits so I’ve been taking it slowly. The weirdest thing I have noticed is that my left thigh has become a bit hypersensitive since the operation, I am just rubbing it and hoping that it will sort itself out, though it’s a small price to pay for my life back.





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May 1, 2020 Phil

Phil

Hello my name is Phil, I am a 32 year old male who lives in Oregon, US. I have experienced some past hip pain –...

Hello my name is Phil, I am a 32 year old male who lives in Oregon, US. I have experienced some past hip pain – but only after competing in athletics – basketball, and running. So I have always attributed it to being “sore” or part of the “recovery process”. Over the past 6 months or so it has become more debilitating with general activities, walking hiking, etc. and I have seen multiple doctors. I was just diagnosed with Hip Dysplasia a few weeks ago after demanding an x-ray, so I have just begun my journey and I am getting educated. This forum has been a blessing.

Over the past few weeks I have seen multiple physical therapists to help strengthen my body around my hips – but I am trying to ultimately get to the long-term resolution and get my life back. I had an MRI just yesterday on both hips (was diagnosed with bilateral dysplasia). I see an orthopedic doctor for the first time next week.

I have two young children (7 months and 2.5), and a lot of unanswered questions and anxiety around this issue – caring and supporting my family. I think about it most of the time every-day. I have always competed in athletics at a high level – I am 6’2, 190 lbs, and very healthy. This prognosis came as a blind-side and has triggered an initial depression within me – but hoping to see the big picture.

I look forward to connecting with folks on this site, and connect with the community as this journey into the unknown begins. I appreciate all of the shared stories and feedback.

Phil





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May 1, 2020 Ivelisse

Ivelisse

My name is Ivelisse, I am 44 years old and I am from Puerto Rico, but I live in Florida USA for 14 years. I...

My name is Ivelisse, I am 44 years old and I am from Puerto Rico, but I live in Florida USA for 14 years. I was diagnosed with Hip dysplasia in my left leg from 4 years of age.

From there I started with 5 surgeries on my hip, which did not make any improvement. After going to several evaluations with surgeons, at 17 years of age they shortened the right femur to level the legs and avoid further scoliosis. After the operation they left only 2 cm of difference in legs. But, as my dysplasia is that my femur acetabulum is out of the socket, or floating and rubbing the hip every time I walk or move, because the difference of 2 cm is seen more.

This has caused me a lot of pain, a lot of bulling, a lot of depression etc.
But at the same time I think I still have the joy of having my 2 legs and still be able to walk, climb up and down stairs, run, bend etc. Sometimes with pain but I can say that I am blessed in comparison with other people.

Today I am a mother of 3, by cesarean. I keep working hard to get on with my life and enjoy my family.

My most recent evaluation was in 2017, in which the DR thought to see me in wheelchairs, crutches, or cane, according to my x-rays. But when he got in the room, he was amazed at my movements and that I did not use any of those. He just recommended to keep moving because that’s what has helped me and strengthened my back and my hip bones.
While I do not need it, I will not have any surgery on my hip, unless the pain prevents me from my normal life.

I’m glad to know that I can communicate with people who have or are going through similar situations. And to be able to read their stories. It has been a pleasure to tell you mine.

Thank you for your attention.





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May 1, 2020 Jordyn

Jordyn

Hi, my story started 6 years ago, when I was involved in a car accident, in which I was thrown from the vehicle. The accident...

Hi, my story started 6 years ago, when I was involved in a car accident, in which I was thrown from the vehicle. The accident resulted in many fractures around my pelvis, and it took months to heal, but my bones all healed together quite well.
About a year after the accident, I started to feel pain in my hip. I went back to my doctor, and x-rays were done, and I was told that my bones looked good and that nothing was wrong. Well, it still hurt, so over the course of the next five years, I went to my primary physician, who told me to get massage therapy. I would also go to the urgent care, where more x-rays were done and again, I was told nothing was wrong, and that I was not going to be prescribed pain killers(the urgent care doctor assumed I was just pill seeking).
I then tried another option and went to an orthopedic doctor in a city in another state, where a student doctor saw me, did more x-rays, and again, I was told nothing was wrong, that he was not going to prescribe me pain killers, and that I could try physical therapy if it “really hurt”.
Well, I had pretty much given up on doctors believing me that something was wrong, as several doctors did not take me seriously and only thought I was pill seeking. So I stopped trying to get help.
Well one night at work, I was walking and my hip slipped out of socket and I could feel it, and it was extremely painful. I went back to my primary, and told her my hip hurt, she told me to go back to the orthopedic doctor. So, back I went, and did more x-rays. And once again, was told my bones were fine and nothing was wrong. When finally, a second doctor, suggested I do an MRI, to which I agreed.
After the MRI, they called me in, to tell me that my labrum is so torn, that they can’t fix it and I would need to see a specialist. So I was referred to an amazing doctor in Denver, Colorado, 6 hours away from where I live.
So I wait a few months for my surgery date, to reconstruct the labrum. Once arriving in Denver, the day before surgery, I meet with the doctor and he wants to do x-rays in his office, it was his protocol with traveling patients.
After the images were taken, the Dr. comes in to talk to me, he is very somber and apologetic. He tells me, that I have hip dysplasia and that I was born with it, and that he cannot replace my labrum, without addressing the dysplasia as well. So now here I am, looking at two operations, instead of just the one.

So the next day, I had my labrum reconstructed, then 10 days later, the POA. I am currently 9 days post op poa, and it has been a rollercoaster. I stayed in the hospital only 4 days, and I did not get out of bed till the second. I was shocked that i could not lift up my leg and move it forward, i would inch my leg using my toes.
I felt defeated by this operation, like I would never move my leg the way it used to, but finally, it moved, and that gave me motivation and hope for the next day. I made it home finally, and I was exhausted, I mean every time I would stand up, i felt winded. I also have terrible anxiety, so the feeling of being winded, every time I got up, made me nervous that something was wrong.

I started thinking to myself that maybe I was anemic, or had pneumonia, or that I had a clot in my lungs. That really got to me, so two days ago, I went to the hospital, with a heart rate of 130, low blood pressure, my hands were white and clamy, and I was having trouble breathing, all the symptoms of pulmonary embolism.

They gave me iv fluids, and took a few samples of blood, listened to my lungs for fluid, and did a CT scan to check for clots. My blood results came back, and my oxygen, hemoglobin, kidneys, EVERYTHING, came back perfect and normal. I was not anemic. Then the results of CT came back, no clot. My heart rate during this time went down to my normal 80bpm.
I was giving myself a constant panic attack, because I got inside my head about this recovery, and my mind got the best of me. But at least I knew for sure, that nothing was wrong with me(besides being a little dehydrated).
So, I am trying to look at this, as one day at time, I know I will have good days, and bad days, but as the days go by, I can check it off as being one day closer to where I want to be. And before I know it, I will be walking just fine again.
I hope this story helps someone else to know that what they are going through is normal, and to listen to your body, and rest, rest, rest!! Every day is a little but better then the day before. And you can do this!!!!





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May 1, 2020 Penny

Penny

Congenital Bilateral Hip Dysplasia – My Story Learning to accept my body through various stages of health was (and sometimes still is) the most difficult...

Congenital Bilateral Hip Dysplasia – My Story

Learning to accept my body through various stages of health was (and sometimes still is) the most difficult life challenge I’ve faced. After each hip surgery I would think – yes! this will be ‘the one’ then find myself falling down and in a lot of pain a few short years later. As a teenager, it was difficult to understand the benefit of going through painful surgeries and spending months in hospital to gain only a few years of mediocre mobility. As an adult, I’ve gone from being in so much pain I could barely walk at all to being physically strong enough to hike mountain trails without a walking aid. The freedom I experienced by achieving a level of strength and mobility I was told I would never have gave me a glimpse into the world of ‘normal’ people, and it was both a blessing and a curse.

Today, as long as I remind myself to be patient with myself, take time to exercise and make sure I eat the foods that work best for me, I’m pain free and I’m mobile! I’ve learned to look further than the obvious when it comes to interpreting symptoms, and I don’t accept limitations.

Here is my story.

THE BARE BONES

I was born in a small town in south-eastern Saskatchewan, Canada in December of 1965. I don’t know if anyone tested for ‘clicky hips’ at this hospital – I don’t know if anyone in this small town even knew what congenital bilateral hip dysplasia was in 1965. All I know is that no one discovered I had a severe case of bilateral hip dysplasia until I was nine years old.

I was put up for adoption and went to my Regina family in May of 1966. As a small child, I fell down a lot. My knees were always scraped and bruised. I could sit comfortably on the floor, my knees pressed together, with my feet pointing outward at a 90 degree angle. My parents, not knowing any better, would have me display this ‘double jointed’ feat when friends and family visited. No one knew this sitting position might aggravate an already bad situation. As I grew, my developing limp became more exaggerated and the realization that I was ‘different’ was solidifying in everyone’s mind.

In 1974 my dad took me to see his chiropractor. This doctor barely watched me walk through the doorway before he exclaimed: this girl’s problems are way beyond me – she needs a surgeon! There was a radiology department in his office and x-rays confirmed his suspicion – I had bilateral hip dysplasia. The acetabular shelf on the left side of my pelvis was extremely shallow. My femur basically floated alongside my pelvis. The right acetabulum was slightly deeper, but it still only covered a very small portion of the right femoral head. At the urging of my dad’s chiropractor, our family doctor arranged for an orthopedic consult.

Dr. A, to our astonishment, uttered the same words as the chiropractor after viewing my x-rays: this is way beyond my capability! Pointing to the x-ray displayed behind him on the viewing screen, he reiterated what my dad’s chiropractor told us about my condition, but added there was no one in all of Saskatchewan that he knew of that could perform the surgery I needed. He suggested a surgeon in Saskatoon might be able to perform the surgery I needed, but he wasn’t optimistic. He went on to explain that without surgery, there was a high probability that I was looking at living in a wheelchair from the age of fourteen on. Dr. A didn’t beat around the bush. At the time, his matter of fact way of speaking was shocking and terrifying, but eventually I came to appreciate his honesty, integrity and his bluntness.

My parents were deeply concerned and they eagerly accepted help from anyone they believed was capable. The first orthopedic surgery I had was in 1975. A customer that frequented my dad’s hardware store was a Shriner. He arranged for an orthopedic consult through the Shriner’s Hospital in Winnipeg. When we saw Dr. B, he noticed I had cavus foot – a high arch in both of my feet. Tests were ordered to see if there was proper neural and muscular function in my lower legs – which there was. I didn’t walk on my heels or my toes, although I did walk on the outsides of my feet, so it took many years for me to come to terms with and fully understand why he thought cavus surgery was needed when we were all well aware that I essentially had no hip sockets.

Today, there is a much deeper understanding of movement and body mechanics, so I’m not sure anyone would suggest this surgery ahead of pelvic surgery today given the same circumstances. Nonetheless, tendons and ligaments were cut and redirected, bones were reshaped and it did nothing to improve my gait or reduce my developing and increasing joint pain, and I ended up with hammertoe to boot.

Once the casts were off, I spent a few weeks at the Shriner’s Hospital for rehab. The hospital was situated in a beautiful spot on the banks of the Red River. There are a few memories from my time there that linger in my mind, but there is one that stands out because I hear of and have recently had similar experiences all these years later.

As a patient, there is an assumption that all of the various health professionals you work with after surgery know everything there is to know about your condition. It’s simply not true, and it’s not possible either. When I was in training for both counseling and nutrition, we were taught to present ourselves as an authority. This, we were told, helps to instill confidence in the client/patient. The part that was missing from that narrative is there is a difference between presenting yourself as an authority while still maintaining respect toward the patient/client, and being condescending and disrespectful.

I recall a physiotherapist scolding me for using the railing to navigate stairs. With bilateral dysplastic hips, balancing on one leg at a time while going up and down stairs was simply not going to happen. Additionally, the stairwell in the hospital was concrete, and I was afraid of really hurting myself and having to stay here longer if I fell. Today, when I think about this incident, I wonder if the fact that I had bilateral hip dysplasia was even noted on my chart. Years later as an adult, I ran into another physiotherapist who obviously had never experienced physical trauma. Scolding a patient for moving in a way that avoids pain is counterproductive for all involved.

Every year my gait worsened, dislocations became my normal and the pain increased. By the time I was 13 years old my parents knew they had to find someone who could help me very soon. Desperate to get me help, they took me to see a well known orthopod – I’ll call him Dr. C – in our city. Our family physician assured my parents that this surgeon was highly skilled and the only one in the city who would attempt the surgery. He had never performed a Salter’s osteotomy before, but he convinced us he was capable. Surgery was scheduled for the summer of 1980. I spent three weeks in traction and was to remain non-weight-bearing for three more weeks.

Physiotherapy went well once I started putting weight on that leg and I was walking without crutches twelve weeks post op. Initially, the dislocations stopped and there was no more pain. Several months later all three pins snapped in half and started cutting their way to the surface. It was incredibly painful and the entire area around the pins became infected. A few weeks later, I watched as Dr. C, using a local anesthetic, removed the broken pieces that had cut their way to just below the surface. The bottom pieces were left in the pelvis and remained there for several years until they were removed by a different surgeon in a subsequent surgery.

My parents knew the right side still had to be corrected, so in 1982 Dr. C attempted another Salter’s osteotomy – this time using threaded stainless steel pins that were quite a bit longer. I spent six weeks in traction and two more on complete bed rest for a total of 8 weeks post op. The thinking at the time was to give the bones ample time to completely heal before I tried to move. Isometric exercises while on bed rest were not common practice at that time, so there was considerable atrophy head to toe when I was finally allowed up. The pins were removed at twelve weeks before they had a chance to break and cause soft tissue damage. I spent several months in a convalescing hospital where I engaged in physiotherapy twice per day.

Less than one year after the right osteotomy surgery, I started experiencing a lot of pain in my left hip when I walked. Now an adult, I decided to go back to Dr. A to get his opinion about the previous surgeries as well as see what he thought might be causing the pain now. There was no sign of any positive bone growth according to new x-rays despite the osteotomies. The femoral head on my left side had formed a kind of groove on the side of my pelvis. It would occasionally jump out of this groove and we referred to this as a dislocation. I was now suffering from chronic pain in my lower back as well as the entire hip area. Dr. A prescribed analgesics and anti-inflammatories, and encouraged me to ‘wait it out’ as long as I could.

In 1990 a new surgeon who gained considerable osteotomy experience during his residency in Toronto moved to Regina and took me on as a patient. The left hip had become quite painful and needed immediate attention, so Dr. D performed an osteotomy that summer. I was told that I wouldn’t be getting up immediately after surgery, but somehow that information didn’t make it to my chart. A porter came to take me to physio the day after surgery as this was now the common protocol with hip replacement patients. I argued with him telling them that my doctor had told me otherwise, so he checked with the nursing staff who checked my chart and didn’t see any notations. That’s the problem with cookie-cutter protocols and an overworked system – no one stops to listen to a patient – they just blindly follow protocol. The nurses dismissed everything I said and insisted I get up out of bed. A porter took me down to the physio department where the head of physio took one look at me and had the porter take me right back to my room. I was absolutely furious. The next morning at rounds, I made a point of discussing what my course of action was going to be with my surgeon in front of the head nurse, my attending nurse and anyone else that thought they were in charge of my body, so that all of us were on the same page. My left leg was put in a traction sling while I was in bed, but there were no weights attached. The use of a passive movement machine was introduced, and isometric exercises were encouraged while on a 48 hour bed rest. I was instructed to only put my toes on the ground when I stood up, and to sit with my weight on the unoperated side of my butt. Everything seemed to be healing well until I sprouted a major leak. A large hematoma developed just under the incision. Every few hours, the pressure would build up and blood would soak through several layers of heavy gauze. This continued for ten days and prevented me from getting a day pass to attend my grandmother’s funeral. I was released from hospital once the bleeding stopped. Six weeks later I was walking with full wait on my left leg. Twelve weeks post op and still using crutches for support, I returned to work.

One year later, Dr. D. performed another osteotomy on the right side. This surgery went well and there were no complications. A few months after these surgeries were done, Dr. D moved to Nebraska, so all of my follow up was done through Dr. A. A few months later, it felt as though the pins on the left side were working their way up to the surface. It didn’t take much pressure to feel the tip of the pin through the skin, and it felt as though the pins were cutting tissue when I moved. An x-ray showed the pins were exactly where they were supposed to be, so it didn’t make sense to either of us. Dr. A scheduled me in for day surgery to remove the pins. He found a large cyst exactly where the hematoma had been and removed it. I woke expecting a small one inch incision, but found the entire nine inch incision had been reopened. No one in recovery could answer why, so I asked them to leave a message for the doctor to call me. Later in the evening the next day, Dr. A called me at home to explain what he found. The tip of the pins were pressing and scraping on the bottom of the cyst creating pain, and giving the impression they were much closer to the surface.

Unfortunately, these two osteotomies did not work nearly as well as hoped, the dislocations and the pain returned within a year. I was having considerable pain in the left hip and butt area, and it felt like I was sitting on a golf ball all of the time. I was able to get an appointment with Dr. A within 24 hours and we both stared at the x-rays not knowing what to do next. He arranged for a ‘show and tell’ appointment with all of the orthopods at that hospital. No one had any ideas or suggestions for a course of action, so Dr. A suggested I stay home, do as little as possible, avoid stairs, lifting, and encouraged me to stay off the leg entirely and use crutches to get around. Dr. A contacted Dr. D in Nebraska to see if he had any advice. Together they decided the best course of action was to send my entire file to Dr. E – a very prominent orthopedic surgeon in Toronto, ON. Dr. E pioneered a specific type of acetabular reconstructive surgery that was proving successful. He agreed to take me on as a patient and scheduled surgery for the following spring.

In May 1993, an acetabulum was carved out of my femoral head and affixed to the side of my pelvis forming my first real ‘hip joint’. A femoral pin replaced the bone used for the acetabular shelf, and an osteophyte the size of a golf ball was removed from my gluteal tissue. I was told this was the largest osteophyte anyone, including Dr. E had seen so far. No wonder it felt as though I was sitting on a golf ball!

I was up and moving after only 48 hours, but was to remain non weight bearing for six weeks. A few days post-op my new ‘hip’ dislocated, so after a closed reduction in radiology, I was put in an abduction splint and remained in bed for the next 14 days. I was released from hospital one week after getting out of bed and flew back to Regina. Less than a week later, the left femoral head dislocated again. I was taken by ambulance to the ER. As long as I didn’t move, I could manage the pain, but if I moved – even slightly – there was considerable pain. As I laid in a bed in the emergency department worrying about who was going to be able to put my hip back, I overheard an argument down the hall. The physician in charge was yelling at the orthopod on-call who did not want to attempt reduction when he heard it was me laying there with a dislocated hip. All of the orthopods at this hospital knew who I was from the ‘show and tell’ and were aware I had undergone reconstructive surgery in Toronto. The on-call surgeon suggested to the attending that I wait until the following morning, when a surgeon with more hip experience would be available. When I was told this, I was completely willing to wait until morning, but the attending physician insisted I be attended to that evening. The on-call orthopod performed a closed reduction in OR a few hours later.

A large wedge was placed between my legs to keep them abducted. I was sent home a day later with instructions to do as little as possible, remain non weight-bearing and basically stay in bed for the next three months. Being at home was quite the challenge because my hip was incredibly unstable, and my house was not nearly as accessible as the hospital. I was terrified to move. I didn’t have a lot of faith in the surgeons I had access to, and I was worried that if something went really wrong, the only surgeon capable of providing proper care was clear across the country. I was concerned about soft tissue damage from more dislocations and I just wanted to get back up on my feet without further drama. Finally, after twelve long weeks of moving from the bed to the couch and back again, follow up x-rays showed the capsule had finally healed properly and I began physiotherapy. It took several months for me to gain enough strength to be able to return to work.

In 1998 I returned to Toronto to have my right side attended to. Dr. E performed the same reconstructive surgery he had done on my left side, but this time he used a slightly bigger component and there were no complications. I flew back to Regina 10 days post op, which was as soon as the airline would give me clearance to fly. I was walking full weight after only twelve weeks and returned to work five months post op. I was really happy my recovery was fast and easy for a change.

Approximately four years after this surgery, I started experiencing a great deal of pain in my right hip. The femoral head was bulging, and it looked and felt like it was about to dislocate. It reminded me of the dislocation shortly after the left hip was done and I became frightened that there was something wrong. The femoral head appeared to be riding along the front edge of the acetabular cup held in only by soft tissue. By this time in Regina, all the surgeons I had seen before had moved to other provinces or to the USA, so I was referred to someone new. I had x-rays and a CT scan, but nothing appeared out of place or broken.

Dr. G had no answers for the pain I was experiencing, but he told me he would contact Dr. E in Toronto to see if he had any insight. Once I saw the x-rays and the film from the CT scan, I knew there was nothing wrong with the structure and dislocation was unlikely. My fears were abated so I turned my attention toward my muscles. It felt like my piriformis (the muscle right in the middle of my butt cheek) was in spasm and somehow pushing the femoral head anteriorly (toward the front). I began going to regular deep tissue massage therapy. After a few months, the bulge went away, the pain was gone and life was good again. A year later Dr. G called me in for a follow-up. He asked me what happened after I saw him last. Apparently, he had dictated a letter to my surgeon in Toronto outlining the pain etc. but the letter was misplaced in his office and never sent. I explained in detail what I believed caused the bulging femoral head and the course of action I took to alleviate it. To his credit, he carefully considered what I told him, agreed it was plausible and suggested we take x-rays to make sure everything was fine. X-rays confirmed everything was where it was supposed to be so away I went.

This was the first time in my life that I had what I considered to be ‘real hips’. I was pain free and completely off all pain relievers. I was exercising regularly, but not gaining any real strength. I was short of breath despite cycling for 30 min three times a week , and I couldn’t’ seem to get my body to move to the next level. My weight was starting to come back down, but I hit a plateau I couldn’t get passed. Being hypoglycemic, I chose low glycemic foods to keep my blood sugar levels stable, and I ate plenty of fresh fruit and vegetables. Occasionally I would experience intestinal symptoms that neither myself nor my family doctor could explain, but they would pass eventually, so we didn’t investigate further. I also followed a low salt, low fat diet and aside from eating yogurt every day, didn’t take any probiotics. I thought I was eating healthy and giving my body everything it needed nutritionally, but eventually I would learn how incredibly malnourished I actually was.

In 2005 I hired a personal trainer with a kinesiology degree to help me build more strength. I decided to let my body determine what I was or wasn’t capable of and disregarded the long list of ‘never do’ I had been given by all the physiotherapy departments. By mid 2006 I achieved a level of mobility no one believed possible.

My distance improved to where I could easily walk a mile in 25 minutes without any walking aids, but my cardiovascular function still wasn’t as great as I thought it should be. My core strength had improved considerably, although my right leg would mysteriously abduct on its own during weighted abdominal exercises. I never did figure out why this was happening. My guess was, and still is, the attachment points for the iliopsoas (hip flexors) must have been repositioned during one of the osteotomies on the right side causing a strange angle of pull in this movement. My legs will adduct as I fatigue when swimming as well.

In 2009 I was hiking long and steep mountain trails in Banff National Park, canoeing on beautiful mountain lakes, and really enjoying the freedom of pain free movement. I even took the gondola up Sulfur mountain in Banff, AB and hiked all the way down! I was self sufficient in a way that I had never been as an adult. Outdoor yard work and shoveling snow in the winter were easy chores for the first time in my life and I was over 40 years old! This new found physical freedom was short lived though. By 2010, my left hip started clunking and the muscles started weakening. By the fall of 2011, I could barely walk a block, and I was in a great deal of pain. I knew I was going to need to see a surgeon.

I had recently moved to Calgary, AB and hadn’t bothered to look for a family doctor yet. My brother committed suicide shortly before I moved and I wasn’t quite my usual self. As soon as the pain started in my lower back, I started seeing a chiropractor and a massage therapist. Together, they managed to keep my pain at bay, but it was clear that something was going very wrong with my left hip. I began to search for a general practitioner. The first doctor I saw told me, when I asked for hip x-rays, that she wouldn’t prescribe pain medication. I’m not sure how she confused the request in her mind, but it was a very clear indication that this was not the doctor for me. I was becoming desperate and knew I needed x-rays. Why, I didn’t just go to the emergency department shows the level of irrational fear I was in. Nonetheless, I had developed a good relationship with my chiropractor so he gladly ordered x-rays for me. The radiologist suggested further testing using a CT scan, so I had to find a GP to order the tests and arrange for a referral to an orthopedic surgeon. Several weeks later, I finally found a doctor who was accepting patients, took the letter in from my chiropractor and the radiologist, and his office arranged for the first CT scan. Several weeks after that, a leukocyte scan was scheduled although no one in this GP’s office could explain to me why I needed this type of scan. A quick google search gave me the information I needed and eased my worries. I now had all the radiology tests I needed and for whatever reason that I cannot explain at all, I had to convince this doctor to issue a referral for an orthopedic consult. The pain I was experiencing was beyond anything I had ever felt, and on top of everything else, I developed a grocery list of intestinal and other seemingly unrelated physiological issues. Routine blood tests showed no indication of disease, but I vaguely recalled an article that I had read several years prior that described several of the symptoms I was now experiencing. I went to the library in search of appropriate books so I could help myself.

This GP was also reluctant to prescribe pain meds, so I was left with over the counter analgesics and anti-inflammatories. There must be some sort of paranoia about opioid addiction with every orthopedic patient because both general practitioners I saw refused to prescribe pain meds.

By May, I was taking 800 mg of ibuprofen every 3 hours for the pain along with acetaminophen every 4 hours. I was becoming sicker, weaker and gaining weight by the day. I put myself on a restrictive diet based on my research, and started taking probiotics to address my intestinal issues. My course of action did improve my symptoms and my overall pain became manageable for a time. By June of 2012 the pain became so severe I could only manage it for short periods at a time. I spent most of the day laying down and trying to remain very still. I booked an appointment with a naturopath to see if there was anything else I could do. I was given numerous tinctures to help prepare my body for upcoming surgery.

In late August, I had my first orthopedic consult. The first surgeon I saw looked at the x-rays and uttered those familiar words: this is beyond me – you need to see someone else. He arranged for me to a surgeon who specialized in difficult hip reconstructions. Six weeks later I met Dr. H, an extremely gifted orthopedic surgeon. He explained that posterior migration was common among hip reconstruction patients, that no one knew what caused it, and most importantly, that he could repair my damaged hip joint.

During this discussion, the pieces as to how and why I developed a severe imbalance in intestinal tract became obvious in my mind. Despite a diet that included plenty of water, soluble and insoluble fibre, I had been constipated for months. Now, I understood. The left side of my pelvis had moved backwards in my body to the point it was pressing on my colon causing an impingement. Fecal elimination was impaired which then allowed bad bacteria and yeast to proliferate. Bacterial and yeast imbalances can cause joint and muscle pain on their own, so my symptoms had been exaggerated. Nonetheless, my suspicions were confirmed and I was thankful that I had followed my intuition and taken steps to reduce the yeast and improve and repopulate my intestinal tract with good bacteria.

Six weeks later, I was in the OR undergoing another full hip reconstruction. Along with more bone grafting I was given a larger acetabular cup component, and a larger femoral head component. This would greatly reduce the possibility of dislocation. I was extremely nauseas after surgery and had trouble keeping anything down. I was never one to react from any kind of medication – anesthetic or pain meds, but this time nearly everything was causing me to vomit. Weight bearing was minimal for six weeks, but once I was able to fully weight bear, I progressed quickly from walker to crutches, and then to cane.

Rehab was challenging because my left hip was now slightly higher than my right, the muscles on the left side had stretched so much from the entire hip moving backwards in my body, it looked and felt as if the left leg was several inches longer. I used regular deep tissue massage therapy and heat to help manage muscle soreness and pain from the rehab instead of taking medications. As I progressed, my muscles seemed to stay tighter than they should have been, but I kept pushing forward anyway. Although the right hip had not deteriorated to the same degree as the left, it wouldn’t have taken much longer before added stress from the new angle of my pelvis to create a problem. After discussing this with Dr. H, we decided the best course of action was to get the right side done as soon as possible. Six months after the left reconstruction, the right side was done.

I was able to put more weight on the right leg immediately after surgery, so getting to the point of full weight bearing didn’t take long. Rehab was going well, but the cumulative physiological and emotional strain on my body was catching up with me. I was exhausted, extremely impatient and frustrated more often than not. I wasn’t able to sleep more than three or four hours at a time, I was chronically anemic from heavy menstrual blood flow, and just as I was finally starting to get around better, I broke my right foot. I was back on crutches and told not to put weight on that foot. Trying to hold the foot up with the weight of the cast was difficult because my hip flexors are incredibly weak, and my already non-existent patience prevented any rational thought. My foot was in an air cast and the pain wasn’t unbearable, so I walked on it a lot sooner than I should have. Consequently, it took a lot longer for the foot to heal than I was emotionally prepared for, so once again I pushed my overall rehab harder than I should have. I really just wanted to get on with normal life. This time, I tore the meniscus in my right knee. You know the saying: healing is taking one step forward and three steps back……this felt as though it set me back 200 steps.

I couldn’t get up and down off the floor, so I wasn’t physically able to maintain any kind of quality hip rehab. There was too much pain to cycle and I was tired of dealing with pain. The little strength I had gained prior to tearing the meniscus in my knee regressed. The waiting list for knee surgery was a little bit over one year. Finally, fourteen months later, I had my knee surgery. Afterward, I had to start from scratch in my rehab and that was extremely frustrating. I was out of patience with my body.

While it’s partly true that my impatience was a major culprit behind my perceived lack of progress, I discovered that there were other physiological imbalances contributing to my body’s inability to progress at the rate I wanted it to, as well as my lack of patience.

Despite my well rounded diet, I had multiple nutritional deficiencies that required very specific supplementation. My hormones were wildly out of balance, and I hadn’t yet identified any food sensitivities. It had become very apparent to me that symptoms overlap, so I needed to address each area that was out of balance before my physical rehab would progress without further damage.

THE MIND/BODY CONNECTION

When you’re born with a condition that keeps you from living the way everyone else does, your personal understanding about who you are gets tied to that condition emotionally, and every ache and pain you feel in your muscles and joints gets tied to the condition physiologically. Avoiding pain, emotional or physical, is natural, but until you learn to separate you from the condition in your mind, you’re going to find yourself in a never ending cycle of pain – emotional and/or physical.

I believe we come into every life with everything we need to get us through the challenges we’ve chosen. I was defiant – right from the get go. You can see attitude written all over my face in this picture taken when I was only six years old.

The idea that God gives you everything you need to get you through whatever it is you’ll face in this life was true for me, because I came to this life with lots of attitude. That attitude gave me the grit I needed to get through all those surgeries and deal with all that pain, but that attitude also put me in a lot of situations that I didn’t need to be in. Until I learned how to balance that attitude, I lived in a cycle of misery.

THE MIND CONNECTION

Everyone must come to terms with their personal understanding of belonging, but when you have a birth deformity that clearly sets you outside the norm, your perspectives dealing with belonging in the filing cabinets of your mind will likely be distorted.

I never considered myself disabled. I refused to accept that label, despite it being thrown my way for most of my life. I certainly couldn’t do things that other kids could – I couldn’t run without falling down, play sports, or dance like other people, but I had my own gifts. I also came into this life with an enquiring mind that was eager to learn, and luckily for me school was easy. I loved to read, and I had a natural talent for music. My parents enrolled me in music when I was five years old – long before anyone thought of me as having a disability.

By grade 3 though, it became apparent that I wasn’t going to be able to keep up with the other kids. Before that, I was able to participate in various physical games like dodge-ball, go swimming and even ice skating with my class. By grade 5, when my class played baseball, I would swing the bat and someone else would run for me. At that age, everyone is learning the rewards of competition, so I was always last to be picked for a team. The thing is, I wouldn’t have picked me either as a ten or twelve year old had I been physically capable because the reward of winning exceeds compassion or even pity at that age.

I remember an outdoor ed trip in grade 7 that was particularly emotionally traumatic. Our class went canoeing. Each of us was partnered with another classmate but I couldn’t walk and carry the canoe at the same time. I remember the teacher becoming very frustrated with me. He began screaming at me and I was humiliated in front of my classmates. The rest of the trip didn’t go well either. Our canoe tipped and both me and my school mate were drenched. On the trip back to the school, we were both made to sit on the floor of the school bus. Being forced to stay in physical education class after that only made me feel worse. My grit gave me what I needed to suffer it out, but I felt as though I was set up to fail at every class. I didn’t get to the end of that year without becoming full of anger, resentment and bitterness. It didn’t improve the next year either, because no one clued in to or even bothered to ask me why I was so angry. I was punished by the teachers for having an attitude, and ostracized by classmates.

The file that started out in my LOVE cabinet that said “I belong here” had moved to my FEAR cabinet and was gathering hundreds of filters. My defiant attitude was attached to that file and the initial conclusions that said I belong, was rewritten to say “I don’t need anyone – I’m just fine on my own”. Later on, when people reached out and tried to help me, I perceived it as pity and I was instantly offended. This was one of the many mind files that created all sorts of ongoing conflict in both my personal and professional life.

While one mind file that had to do with belonging was creating division between myself and other people, there was another file gathering lots of data. This file was labeled: ‘Where do I belong?’. This was the beginning of my life journey to understand where I fit in. I researched belonging from a mythological, philosophical and Spiritual perspective. Eventually, I was able to blend the two files together and find inner peace and balance.

THE BODY CONNECTION

Growing up with different levels of physical pain teaches you to listen to your body in a way that people who have never experienced illness can’t. I was very fortunate to have surgeons, general practitioners, physiotherapists, chiropractors and nurses along the way who were willing to spend a great deal of time with me, teaching me about my body long before I ever began formal studies. I was also very fortunate to have had doctors who understood and were incredibly receptive to me being an active participant in my overall health, but I’ve also run into several physicians, nurses, physiotherapists, and other health care workers who were disrespectful, arrogant and unwilling to be a co-healer.

While not every person does whatever they can to help their body heal, my father encouraged me to take ownership and be responsible for my body. I learned to apply the physiological science I learned to my body through analyzing my symptoms. This allowed me to provide my doctor with very specific information that helped us determine together, the best course of action, if any, for me.

Most health care professionals – regardless of their discipline – have never experienced illness in the same way that the people they are helping have or are. I learned the hard way to trust my instincts when it came to making health decisions, because making decisions when you are in excruciating pain, fearful that you’ll never walk again, and stressed in every way imaginable doesn’t usually end well for anyone.

Our bodies are complex structures. Every part communicates with another part – beginning at the cellular level and extends outward. This communication is an important indicator of the state of a person’s overall health. Symptoms are the body’s way of alerting our mind that something isn’t working properly. Both conventional and alternative (or holistic) medicine looks at a symptom as an indicator, but the holistic model takes symptom assessment several steps further before offering a course of action. As I mentioned before, symptoms can overlap so it’s worth your while to consider all possible causes before choosing a remedy. Often, when one imbalance is addressed, it will bring into alignment and balance other body systems that were affected. Sometimes there will be natural solutions – like adjusting your nutritional needs, working with a qualified personal trainer, or getting massage or acupuncture to help with pain, and other times you’ll need to take a more conventional approach.

Achieving optimum health after multiple surgeries takes dedication to your health and know how. In Canada, the conventional model – as it applies specifically to congenital bilateral hip dysplasia – puts the patient in contact with an orthopedic surgeon through a referral from a general practitioner (GP). The GP may or may not have a solid understanding of hip dysplasia, and may or may not have experience dealing with this type of after surgery care. The surgeon isn’t necessarily looking at, or even interested in other symptoms that you are experiencing that might impair your body from recovering from orthopedic surgery because that’s not his/her job. Their job is to perform surgery and they are highly skilled at doing just that. Following surgery, if you are given a referral for physiotherapy, there is a limited number of sessions covered by our universal health care, and those sessions will only address the muscles surrounding your hip. If you want to achieve a higher level of function, or if you developed upper back, shoulder, arm or neck strain as the result of using a walker, crutches or cane pre and post op, you will have to pay for further sessions on your own unless you have insurance coverage through a private plan.

People are not infallible, and health care professionals – both conventional and holistic are people. They make mistakes like every other person on this earth, and they are limited by their practical experience and their willingness to think outside the box. A text book can only teach you the theory. It takes practical application to become competent in something, so if a health care provider has not encountered a particular ailment, how could they possibly have an answer? That’s why it is so important to listen to the signals your body is giving you, and to listen to your internal guidance when it comes to choosing the best course of action for you to achieve optimum wellness.

When you have a condition that takes up such a huge part of your life, the tendency to attribute every ache and pain to that condition is commonplace. We get used to certain aches and pains, and when we believe we know what the cause is behind them, it’s natural to dismiss them. The thing is, our bodies are more than just our skeletal deformity, and the surgeries that we’ve had to correct or even address that deformity put added stress on other parts of our body.

Our body is made up of several systems that are all interconnected. The skeletal system is only one system, but it’s the one we who have skeletal deformities tend to focus on. Pain medications, multiple rounds of antibiotics, physical and emotional pain and trauma affect our nervous system, our intestinal system, our endocrine (hormonal) system, our digestive system, our lymphatic system, and our cardiovascular system. Ultimately, every system in your body will be negatively impacted after multiple surgeries, but with the right combination of natural and conventional treatments, it is possible to find your way back to optimum health.

Here are a few of the things I’ve learned from deciphering my own various levels of aches and pains.

Obviously, everyone who has hip dysplasia, regardless of the degree, will suffer from low back pain. Some of this pain is the consequence of biomechanics – because we all limp – but low back pain can also be an indication of other issues such as intestinal imbalances, digestive imbalances, endocrine imbalances, and a clogged lymphatic system.

Digestive imbalances:
Underactive or overactive stomach – chronic pain keeps our bodies in a state of fight or flight. Combine that with a high use of pain medications, it only makes sense that the cumulative effect will create havoc with our digestive system. This contributes to lower back pain and a host of other symptoms.
Common symptoms are:
– Heartburn
– Acid reflux
– Excessive gas, belching or burping after meals
– Bloating
– Bad breath
– Feeling tired after eating
– Stomach pain after eating
– Lower back pain
– Burning sensation in gut
– Feeling full for hours after eating
– Hungry a few hours after eating
– Frequent headaches
– Constipation
– Poor concentration
– Migraines
– Oily skin – especially on nose and forehead

Intestinal imbalances:
Common overlapping symptoms are:
– Extreme fatigue
– Pain in pelvic area
– Repeated bladder infections
– Abnormal muscle aches from exercise
– Pain in back, thighs, and shoulders

Hormonal imbalances:
Chronic physical stress and emotional stress related to pain, frustration, and unresolved resentments related to our physical challenges take a toll on our adrenal system which will, if untreated, create an imbalance in several of our hormone levels.

Nutritional deficiencies:
The fuel our bodies use to maintain a heartbeat, breathe, think and move is made up of various nutrients that we obtain primarily through food. When our bodies suffer trauma, both emotional and physical, there is a higher demand for all nutrients. No one could eat enough food to provide their body with the amounts needed to replenish depleted stores.

It’s important to work with a qualified health professional before trying to tackle nutrient deficiencies or other body imbalances on your own. Listen to your gut instinct when choosing to work with any kind of health professional and remember that you have to actively participate in your own health.

MOVEMENT

Finally, working through pain following surgery isn’t easy, and it’s important to learn the difference between normal pain (the kind you get after exercising), and abnormal pain. I had to try a lot of different things before I found the right combination that my body responds well to without risking further injury. Swimming, for me, is by far the best exercise because I can do things in the water that I simply can’t do on land. I also do some yoga and I love to hike in the mountains, although now I always use hiking poles for stability and safety.

Thanks for taking the time to read through this post. I hope that you learned something that can help you help yourself.





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May 1, 2020 Annick

Annick

10 years ago I had never heard of Hip Dysplasia in humans…only in dogs. 10 years ago, I was a runner…a marathon runner. And then...

10 years ago I had never heard of Hip Dysplasia in humans…only in dogs.

10 years ago, I was a runner…a marathon runner.

And then in January 2009, I was diagnosed with severe bi-lateral hip dysplasia. I had 12 degress cover on my left side and 15 degrees cover on my right.  This meant that I was lucky enough to undergo bilateral Periacetabular Osteotomies(PAOs), LPAO on 20th May 2009 and RPAO on 28th October 2009. My RPAO was three days after I turned 47, and lucky me, I suffered a stress fracture (which was undiagnosed for 3 ½ months) which meant that my recovery was not as easy as with my LPAO.  But being a stubborn old mule, I did not let this thwart my determination to walk the London Marathon in April 2010. I started training at 8 weeks post-op having ditched my crutches the day before, and completed it, with my husband, in just over 7 hours!  Four weeks later, I managed to slip and cause a stress fracture to my Ischium on my left hip, which put me back on crutches for another 6 weeks.

Whilst this delayed my return to running, it did make me realise that whilst I had been okayed to run (three days prior to slipping!), I was actually not okay to run! I had huge muscle imbalances between my right and left leg, and I was weak generally overall. I wasn’t strong enough to run a few steps, let alone for an hour or more, and so, whilst on crutches for a third time in 12 months, I hatched a cunning plan!  This plan was to rehab the hell out of my legs, so with the help of a great sports therapist and a personal trainer, I set about starting from scratch, doing teeny weeny exercises which irritated the hell out of me, but my personal trainer warned me that if I were to do anything other than what he had instructed me to do, he would ban me from the gym…and he meant it!  So over a period of 9 months from August to April, I worked and I worked hard Four days a week. Week in, week out, until I felt strong enough to start running again – I was starting to go stir crazy in the gym! I ran my first 10k in the July of 2011. I was back, well, sort of…it was slow, but I was just so happy to be back out doing what made me happy. But there was still a lot of work to be done.

I continued going to the gym for the next 5 years, 4 x a week religiously.  During this time, I decided it was time to do something a little crazy. I remembered my surgeon’s words on the day that I met him. My first words to him were “Don’t tell me that I won’t be able to run again”.  “You will be able to run, just maybe no more marathons” was his reply…I remember thinking to myself he said “maybe”…he didn’t say definitely! And so with that memory in my head I signed up and ran my first post-op marathon on the island of Jersey in October 2013. And then the ball started rolling. Next up came my first trail marathon and my biggest challenge to date – Glencoe marathon in 2015.  There is a mile of climb on this marathon and the terrain is harsh, so it was a pretty big challenge for me, as just prior to signing up I had had to see my surgeon as I was having some issues with my hip flexors.  He warned me off doing hills! Oops!  So I was pretty stoked to complete it. My hips had been well and truly tested and came out singing! A massive grin factor! Then came 2017and I managed to secure a London Marathon place. I was finally fulfilling my dream of running the London Marathon again – and to say I was emotional is an understatement.  London Marathon holds a very special place in my heart and is one of the “have to’s” in my mind. London is hard though for me, as it is pretty flat, all road, and my hip muscles do not like it.  By 17 miles my hip flexors were screaming at me to stop…oh, no, not till that medal is in my hands!

I rather randomly followed up the London Marathon with The Dorchester Marathon, an inaugural marathon which was being held just 5 weeks later – not something that I would normally do, but I had never run an inaugural marathon before and went for it! My hips, yet again, did me proud!  This route, although on road, was undulating – a much better mix for me as this breaks up the position of the leg muscles when running.  So, no screaming hip flexors this time!  I also found that a run/walk/run mix worked well for the last 9 miles and my legs were pretty good the day after.

When I was diagnosed, my surgeon told me that it would be between 5 and 10 years before I would need a hip replacement…so I have, over the past 7 years, been back to see my surgeon every 2 years for a check-up.  So far, so good!  The last time I saw him, two years ago, he was really happy saying to keep doing whatever it was that I am doing as it’s all looking really good and that there was no difference between that days x-rays and the x-rays taken two years prior. Happy days! I don’t think he totally agrees with what I get up to as apparently he raises his eyebrows when my name is mentioned, lol, but I did warn him that I would test his surgery well and truly, and that he might rue the day that he ever met me, so he was warned!!! (Hi Johan! Just in case you read this.)

I should be going to see him about now, but I have malice aforethought going on…it will be my 10 year hippiversary next year and I want to celebrate my hips achievements.  So ULTRATHON here I come! I have entered one which is 37 miles long,  and is local to me, so I can train on the terrain – it is a mix of trail and a little bit of road.  It is in April, so pretty much exactly 10 years from my LPAO, and it is a distance that I have confidence of completing.  I would love to do a 50 miler but I need to make sure I can get to 37 first!  I then plan go see my surgeon and make sure the hips are still ok.

I think what I have learned from my detour down Hip Dysplasia Avenue, is that I am a lot stronger inside than I ever realized.  I am very much more determined than I ever realized, and I am very goal driven. Through my diagnosis I have gained friends that I would never have had, and I am involved in a community of the most supportive people I could ever wish to know. When I was a Torchbearer for the 2012 Olympics, I was asked to think of a motto that summed me up.  “Inspiration from others, determination from within”.  I am inspired by the likes of Nancy Muir, whose achievement of completing the Bear 100 just blew my mind!  She absolutely rocks! I am also inspired by those who are worse off than myself but who always have smiles on their faces and live life to the full.

Running is a gift, as even walking is not a given. I won’t wrap myself in cotton wool, but I do respect what my surgeon has achieved for me and I do my best to maintain healthy hips without stopping doing what I love.

To read about Annick Olympic Torch Experience: Click Here





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May 1, 2020 Josie

Josie

Hey, I’m Josie and I have bilateral hip dysplasia. All of my childhood I grew up with ‘growing pains’ … Sound familiar? No one in...

Hey, I’m Josie and I have bilateral hip dysplasia.

All of my childhood I grew up with ‘growing pains’ … Sound familiar? No one in my family has any hip issues so no one stopped to think it would be anything other than growing pains. Why would they? The paediatrician checked my hips when I was born and there’s no way of telling now, but they either missed it then, or I have developmental hip dysplasia where they just didn’t form correctly whilst I was growing.
For me, growing up with these ‘growing pains’ meant carrying on with activities despite the pain. Learning to put it to the back of my mind otherwise life would’ve just stopped. From a young age I had to learn my pain limits and what I could manage physically.
I stopped growing in height when I hit 11 years old however the pains didn’t stop. My Mum was convinced I still had another growth spurt left so the ‘growing pains’ explanation continued. I am 5ft 3″. I never had that growth spurt haha.

When I hit 15 years old, the pain was just getting too much. I remember vividly the time I was walking home from seeing some friends and my legs just stopped moving. The pain became too much, and my legs just stopped moving. It was that day, I decided I HAD to take myself to see someone about this pain!
The Dr I saw, referred me to my local Hospital who unfortunately were clueless about what to look for let alone how to help me. They gave me an X-Ray, showed me the results and told me I was fine. A little while passed and I received a letter in the post telling me that they had referred me to a specialist hospital where there was a consultant who knew a lot about hip problems and could possibly help me. Finally, I felt like I was being taken seriously!!
I went to see this consultant who did tests such as an arthroscopy which I had to be put to sleep for and I had more X-Rays before they finally diagnosed me with Bilateral Hip Dysplasia. The physician also diagnosed me with Hypermobility, which often comes hand in hand with Hip Dysplasia.
After being diagnosed, I was absolutely crushed if I’m honest. I think I wanted to be told it was in my head and I would ’grow out of it’. Instead I was told I had a lifetime of hip problems and operations to look forward to. I was offered an operation called a Periacetabular Osteotomy (PAO). The operation meant having my pelvis broken in 3 places and screwed together. I was told the waiting list was very long which I was relieved to hear so I agreed to the operation, went home and I went into denial. Many long painful years went by while I tried to carry on my life like I was fine before I realised, I REALLY needed help now. The pain had worsened, and I was unable to do half of the activities I had been doing without a clunk or a pop and agonising pain. I called the hospital and asked where I was on the waiting list, only to discover I was never actually placed on it.
Soon after discovering I wasn’t on the list, I discovered I was pregnant, so my hip plans had to wait!
5 years later, I had my Right PAO on the 5th Oct 2019. My daughter was 4.5 years old when I had my first surgery. A year later had my Left PAO done on the 24th Oct 2019. Both of these surgeries were with a physician who sees adult patients, as my previous physician only deals with the pediatric patients, which I was when I was diagnosed.

As Hip Dysplasia often happens in the first-born daughter (Which it did in my case), I was naturally concerned for my daughters’ hips. I pushed for 4 long years to get her checked and I am pleased to say that her hips are growing perfectly so far! She’s now 5 and a half and showing no signs of hip pain as of yet.
I was diagnosed with Hip Dysplasia when I was 15 and I wasn’t treated for it until I was 24.
I’ve faced many challenges and struggles while living with Hip Dysplasia and Hypermobility. Both before and after surgery and both physically and emotionally.
I’ve faced many challenges while living with Hip Dysplasia, both before and after surgery and both physically and mentally.
Physically, I’ve struggled with sleeping, walking, exercising, physio, nerve damage, learning to walk again, driving, even sex sometimes. Emotionally, I’ve struggled with being misunderstood. No one can relate to something they don’t understand. Having to leave my job because I was a sports coach in a primary school – It was too physically demanding in the end, which left me with the repercussions of money issues which always (In my case at least) leads to poor mental health. I also lost that socialising aspect of my work along with it. Every part of Hip Dysplasia, even the ones not mentioned, can leave you feeling isolated and anxious.
After my first surgery, I had to find ways to get myself out of the hole I felt I was living in. I had to keep reminding myself to slow down and be kinder to myself. I wanted so much to be better that I was rushing and pushing my body too far and too fast.
My anxiety to leave my front door became overwhelming so when I started driving, I decided to get myself into a gym instead, where I found myself socialising with the lovely staff and feeling much more motivated to do my physio. I also had the support of the staff when I felt clueless.
I started volunteering at my local church. A charity that used to run an art club for vulnerable adults had their funding cut so the church took it over and needed volunteers to help supervise and keep it going. I met some wonderful people there, volunteers AND the local people who went.
Before my surgery, I found a Facebook page that had thousands of people who live in the UK and have Hip Dysplasia. A lot of them have experienced a PAO or have one pending. It was the best thing to happen to me regarding my hips, in such a long time. I finally had a community of people who knew EXACTLY how I felt. It was such a relief! I noticed that a few people had also made Instagram accounts for their Hip Dysplasia journeys, so I decided to do the same.

(@josies_hip_dysplasia_journey) I’ve had it over a year now and I have some wonderful followers that I like to call ‘Cheerleaders’ because they are amazing at encouraging you and supporting you. I often see them commenting on other accounts too with the same amount of love and support; all while going through their own journeys too. It’s a wonderful place to be.

If you tell someone you have a headache, they know how to help you and they can relate to your pain. If you tell someone you have cancer, they may not be able to relate to your pain, but there is enough information out in the world now, for people to have a good understanding of how to help you ease your pain or at least keep you comfortable. If you tell someone you have Hip Dysplasia, they ask you what it is, listen in curiosity and move on. Only people who suffer with Hip Dysplasia, understand people with Hip Dysplasia. I hope that one day this changes, but most of all, I hope it can eventually stop being missed in infants so can be prevented in adults. Hip Dysplasia is more common than people know, and it deserves to be better known about.





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May 1, 2020 Joyleen

Joyleen

Hi everyone! My name is Joyleen and here is my seven-year hip dysplasia journey: August 2011: 1st left labral repair with Surgeon #1March 2012: 2nd...

Hi everyone! My name is Joyleen and here is my seven-year hip dysplasia journey:

August 2011: 1st left labral repair with Surgeon #1
March 2012: 2nd left labral repair with Surgeon #1
July 2012: Bi-lateral hip dysplasia diagnosis
May 2013: 1st Left Periacetabular Osteotomy (PAO) with Surgeon #2
November 2013: 1st Left Hardware Removal with Surgeon #2
April 2014: Overcorrection of PAO diagnosis
October 2017: Left PAO Revision with Surgeon #3
December 2017: Left labral reconstruction with Surgeon #3
May 2018: 2nd Left Hardware Removal with Surgeon #3
December 2018: Left Total Hip Arthroplasty (THA) with Surgeon #3

Disclaimer #1: These dates are not meant to induce fear or anxiety. My hope is that every reader will see the differences in each story and will find strength to push through a difficult season.

Here is my story:

My journey began in Summer 2011 when I was diagnosed with a left hip labral tear. For those of you who do not know what the labrum is, it is cartilage in your hip joint (and shoulder joint) which deepens the hip socket where the head of the femur sits in. Anyways, I had decided to have this repaired prior to my junior year of college. But my recovery after this surgery did not go as expected. In fact, I had re-torn my labrum less than six months after surgery. So, my first surgeon and I decided to correct it again with hopes of me returning to my active lifestyle.

Unfortunately, I never fully recovered from my second labral repair. My first surgeon couldn’t figure out what was wrong and mentioned there was nothing left he could do. Emotionally, I was frustrated, annoyed, and felt defeated. I had been on crutches for most of my junior and senior year of college. However, instead of remaining in this state of mind, I decided to pursue more opinions regarding this problematic hip.

Because of my persistence, I met a physician who was able to diagnose me with bi-lateral hip dysplasia! Now, I had no clue what this was at the time, so I decided to research my options. I found that it could only be corrected through more surgery: a Periacetabular Osteotomy (PAO) or Total Hip Arthroplasty (THA). I thought since I had two labral repairs, might as well pursue the THA.

WRONG. The joint replacement doctor I met with was clear that he’d never perform this surgery on a 21-year-old and referred me to a pediatric orthopedic surgeon. The pediatric orthopedic surgeon explained in detail the PAO, its recovery, and explained we could move forward with it once my school year was over.

Third surgery was down in the books and it was HARD. The pain that my second surgeon described was right on the money. This was unlike the labral repairs I had gotten – it was worse.

Disclaimer #2: I have a very low pain tolerance! Everyone handles this pain differently.

The recovery was a tough one, but I was blessed and humbled to have a strong support group to cheer me on. I was determined to live a normal life when at about 5 months post-op, my hip pain returned – back to the surgeon I went. He explained that my screws could be causing the pain and that since my bone had healed, we could remove them. Surgery four arrived and it was nothing compared to the other surgeries – it was so much easier! After my hardware removal, it was time for me to live my life and man was it getting good; I was engaged to the man of my dreams and we were beginning to plan our future.

At ~10 months post-op from my PAO, I returned to my surgeon complaining about more pain. We tried pain management which failed so another MRI was ordered. This time, it came back clear. It was time to get a second opinion. My second opinion told me that my hip had been overcorrected (say what?!) and that I needed a revision PAO.

Disclaimer #3: My 2nd surgeon is fellowship trained. This complication is very uncommon but can happen to anyone. Even the most experienced surgeon has had this complication.

I called my surgeon and told him what had been said. He encouraged a third opinion. The third opinion told me that although my hip was overcorrected, there was a 50-50 chance a revision PAO would work. Seeing as there was no reproducibility with this procedure, we opted out and I decided to just live with the pain.

Four years later…
I am a wife, a mom to an 18-month-old, and had recently returned to work full time. It was then that I really noticed that my hip was hurting badly; I was limping by the end of the day. Initially, I thought my muscles were causing the pain, so I returned to Physical Therapy (PT). A few weeks in, the pain was still there – so it was time for a diagnostic injection. Since I had gotten some relief from the injection, my surgeon ordered another MRI. The results showed a third labral tear. My heart sank. I knew exactly what that meant. No amount of PT or decrease in activity was going to fix the tear. I needed more surgery. To my surgeon I went…

We spoke about a few options: a scope, a surgical dislocation and arthrotomy, or as a last resort, a revision PAO. Instead of making a decision, we decided to get another opinion. This surgeon examined my hip, reviewed my imaging, and said: you need a revision PAO.

TEARS. Not literal tears but I was definitely crying on the inside. I did not WANT to go through that again. It was different this time too – I was a wife and a mom; how could I possibly go through this again? Between surgeon #2, this second opinion, and a surgeon I had seen years ago, the consensus was a revision PAO with surgeon #3 since he had some experience of performing a revision PAO. Now the tears were real…

My revision PAO date arrived and I was nervous, scared, and terrified of the recovery. I remember waking up and my husband telling me my labrum was not torn, it was shredded. I needed another surgery to repair this. Surgeon #3 later explained that my labrum was beyond repair and I needed a labral reconstruction – we could potentially do this in eight weeks. Talk about amazing news to hear after major surgery!

The recovery was much harder this time around. I had to rely on a squad to help my husband and I with the cooking, cleaning, pick up/drop off of our toddler, babysitting, etc. It was intense. It was not fun. I felt alone and defeated often. I also found myself going crazy at home because I couldn’t do anything – I thought I was failing as a wife and mom by being in this condition.

Luckily, the squad I relied on constantly reminded me that it was only a season. Surgery number six arrived and although I was still experiencing post-op pain from my revision PAO, I was focused on the end goal, living pain free. The labral construction was successful, but the recovery was slower than ever – no surprise there!

I remember I felt like this recovery was going to break me. I was not meeting the typical goals for how far along I was. Again, defeated and frustrated – it was really obvious at this point. I had many ugly cries and meltdowns. Luckily, my care team never gave up on me. Instead, we tried many things: hydrotherapy, PT, injections, deep tissue massage, you name it.

At six months post-op from my revision PAO, we decided we could remove the screws. I was still on one crutch (long time, I know) and still in pain, but another step forward to being back to normal. A few weeks later, I finally weaned off of that one crutch and continued with physical therapy. My muscles were getting stronger but extended standing, sitting, and walking for long periods of time aggravated my hip. In addition, my right hip was starting to hurt as a result from overcompensating. Mind you, I have hip dysplasia in my right hip along with Femoroacetabular Impingment (FAI).

I returned to my current surgeon. We had discussed doing a PAO and scope on my right hip in December but also discussed a diagnostic injection in the left hip – if I had relief, it would confirm that the pain is coming from my joint. If not, I’d need additional testing. I had my diagnostic injection and had relief. Time to talk to my surgeon. We had decided that it wasn’t worth proceeding with my right hip PAO and scope without addressing my left hip – I would be miserable. The only thing left to do at this point was a Total Hip Arthroplasty/Replacement (THA/THR).

Now, the purpose of ALL of these surgeries was to delay the THA. To hear these words were heartbreaking. As I write this, I am still struggling to swallow this big pill. Will this recovery be much easier than past surgeries? Yes. Will I finally get relief? Yes. You would think this would be an easy decision but it’s not… it’s been an exhausting journey. All of these emotions and thoughts are completely normal. It’s okay to be afraid of making the wrong decision especially when I know that I’ll need another THR. However, my end goal remains the same: I want to live pain free. I want to be able to walk in the grocery store without limping at the end. I want to run after my toddler and future kids without wondering if it’ll aggravate my hip. I would LOVE to return to one of my passions, dance. In the end, will I get through this? YES!

I know my story is long, complicated, and a bit crazy. However, it remains my story. And despite this being one of the hardest things I’ve had to face in my life, I know it will get better. I am hopeful and convinced that I will be able to live a normal life. So, here is some encouragement for those of you reading this story:

1. Advocate for yourself. Your voice matters – never settle!
2. Accepting help doesn’t indicate weakness. It’s a sign of strength.
3. Stay positive. Setbacks are always a possibility, keep moving forward!
4. Do not compare your story to others. Everyone’s story is different.
5. You are strong and capable of getting through this!

I’ll end my story with a quote that has helped me tremendously – I hope it can provide comfort to you all as you write your own story.

“You never realize how strong you are until being strong is the only choice you have.”





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May 1, 2020 Courtney

Courtney

When I was a teen, through my twenties, and early thirties I was a runner. Always experiencing pain after a run in my right shoulder,...

When I was a teen, through my twenties, and early thirties I was a runner. Always experiencing pain after a run in my right shoulder, I went to a sports Dr. (in high school) to find out my shoulder pain was caused by the difference in lengths of my legs. Now I know that to be a characteristic of hip dysplasia.

Fast forward 15 years and I was 4 years into increasingly intense pain in my right “leg”.
I kept up my intense yoga schedule but had forgone running 2 years prior due to pain. Walking from my car to work was unbearable. I had to psych myself up to get the mental and physical courage to even walk to the bathroom. I hated the stares at my increasingly pronounced limp, the strangers coming up to me asking what was wrong … I just didn’t know !!!
Right when I couldn’t take it anymore, at age 33, I found out I was pregnant! For the first time! What a crazy turn of events. Given this new responsibility, I scheduled a long overdue MRI. It was that day that I was diagnosed with bilateral hip dysplasia. I would start with replacing the right hip, then the left, then in 15 years do it all again. It felt like a ton of bricks slammed me in the chest – how could this be real?
Pregnancy was excruciating, but there was an end in sight. Three months after my scheduled C-section I was going to have a total right hip replacement. I had ultrasound-guided cortisone shots injected into my pelvis every 3 months that kept me walking without a cane, crutches, or a wheelchair – that, and pride.

My daughter’s arrival into this world went wonderfully and my beautiful healthy baby was finally here. Now came the reality – I have to figure out a new body part, re-learn to walk, oh yeah and keep a tiny human alive – with my body!

Becoming a mother changed my hip dysplasia journey profoundly – I don’t know how I would’ve handled this without my baby, or if I would’ve even thought having a child was the right decision for my body. Although reading this story you may think that it was irresponsible to not seek proper treatment sooner, I believe there was something bigger at play and the diagnosis came exactly when it was meant to.

Before all this – running, swimming, surfing (sort of), hiking, yoga, teaching paddleboard yoga, and any physical activity were my identity – and now they were gone. Who was I without it? What made me happy? Would I ever be active again? Am I disabled? Is that my new identity…disabled? The thought plagued and embarrassed me.

That was one and a half years ago.

Today I just returned from surfing 5-foot waves on sunset cliffs in ocean beach – something that I watched from the sidelines for ten years. Eight months after surgery, I joined 8-week program called Ground Swell Community project that gave me back the skill and confidence I was seeking in the water (if you’re interested at all in surf therapy please check them out, they are amazing).
For my 35th birthday this July I went on an off-roading surf trip to Mexico where I had the courage and skill to surf off the grid spots. Nothing can describe how that felt, or feels every time my board touches the water. I saw myself in my mind teaching my daughter how to surf. I didn’t know how I was going to get there but things fell into place as they do.
When I tell you that my new hip gave me my life back – believe it. I am beyond grateful every day that I can do all these amazing things – but also that I can pick up my daughter without pain, walk her down to the farmers market, play hide and seek … all the things!

A lot of the time I have trouble wrapping my head around the surgeries and “things” that may come up in the future, especially as my now 35-year-old body begins to age.
If anyone reading this ever doubts their physical ability after this life-changing diagnosis – please don’t. You are capable of so much. So, so much.

If you’d like to keep in touch or share YOUR story please contact me on Instagram: Cali_surfin_mama





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May 1, 2020 Kelly

Kelly

hi , I’m 23 years old from Dublin , only started to have severe right hip pain in the past year ,visited my doctor she...

hi , I’m 23 years old from Dublin , only started to have severe right hip pain in the past year ,
visited my doctor she sent me for a x-ray and then I was sent for an mri , after this I was diagnosed with hip dysplasia. Apparently its quite bad as in the wear and tear around my shallow hip joint is very badly worn (hence the pain) , every single day I have pain when I sleep and when I walk and when I go to the toilet and when I stand its never ending but you just deal with the pain I suppose , sometimes I think I’m going mad trying to explain to my boyfriend or family how much pain I’m in , I don’t want to take pain killers everyday (some days I have to) and I don’t want to have this pain for the rest of my life its draining.
I was so happy when I finally got an answer to this dark cloud that’s standing over me , the surgeon said that he puts his house on it that ill need the full hip replacement in the next 5 years! (because I wont be able to take the pain anymore)

that’s scary!
– thoughts that run through your head
– is the pain going to get worse ?
– will this affect me having a child ?
– am I going to end up addicted to pain killers in the meantime ?(will they even work anymore)
– am I going to push everyone around me away due to the stress and pain?
-am I going to get so unfit my recovery will be even harder?
– is there anyway I can avoid surgery ?

a lot more thoughts that I just cant remember right now ,
can anyone relate to this ?

current situation is I haven’t had to the operation , few months after diagnoses now and pain is still there and I feel getting a small bit worse.
from the way I walk to aid my hip I always have a lot of pressure and tension on my back and lower back which makes it so hard to sleep at night , always need a thick pillow to sleep with between my legs to aid the pain.

I FEEL LIKE ITS TAKEN OVER MY LIFE





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May 1, 2020 Melodee v2

Melodee v2

~Melodee Nugent~ My Updated Story 1-month post hip revision surgery (December 2018)I already have had a previous Patient Story (click here) with the International Hip Dysplasia Institute...

~Melodee Nugent~ My Updated Story

1-month post hip revision surgery (December 2018)
I already have had a previous Patient Story (click here) with the International Hip Dysplasia Institute in November 2015 regarding my hip dysplasia story and how well I had been doing. A lot has changed since then, and I feel I need to give my revised story.
First off, I encourage anyone with hip dysplasia to get in the water and swim. I know swimming is not for everyone, but it is one of the best sports out there that is easy on your joints. I am lucky to have chosen swimming as my sport (though I didn’t really have many options with my hip dysplasia). I have swimming to thank for helping to make me the person I am today. I can’t imagine myself without this sport I love.

I was born with hip dysplasia which was first noticed at a routine check-up soon after I was born. I had multiple surgeries as a young child; one to correct the angle of the hip and one to try and correct the difference in leg length as a result of the first surgery. I vividly remember one of my last appointments with my pediatric orthopedic surgeon when I was 18 years old. He told me two things: 1) “Watch your weight” and 2) “You will probably need hip replacement by the time you are 40”. His words have always stayed with me over the years.

I credit swimming 100% to my overall health and putting off the hip replacement by about 10 years. I was able to have three children without any complications for the hip. Swimming is a low impact sport and thus makes it a perfect activity for me and others with similar joint issues. There are many swimmers over the age of 40 because swimming is very easy on the joints. Unlike other endurance sports, specifically including running and cycling, wherein athletes are subjected to rigorous pounding of their joints, swimmers can continue to get better as they age.
My passion for swimming has been a gradual process; one that I would never have imagined when I started as an adult more than 20 years ago. I joined United States Master Swimming at the age of 27 (1994). I consider myself a marathon swimmer. I train in a pool all year long. I love the open water races (I have competed in 12 different US states and have traveled to the Caribbean as well). A marathon swim is considered any distance of swimming over 6.2 miles (which is the equivalent of a marathon run). To date, the farthest I swam was a 36-mile swim in the Red River in North Dakota in 2016 (a year before I had my hip replacement). That race took me 12 hours and 27 minutes to complete. I am always looking for new challenges.

Swimming never bothered my hip, probably because being a distance swimmer there is little kicking involved. At the end of 2016, however, my youngest daughter said, “Mom, you say owww all the time”. I knew I was slowing down with walking, doing stairs and bending. I was used to my slower lifestyle on land and learned to deal with it and thought that was just life. I went to the doctor in January 2017 and got the surprise of my life, the reason for the slowness was because there was little, to no cartilage left on my bad hip. Was I shocked….completely! It definitely explained how I had been feeling. I tried a cortisone shot, with hopes of it lasting long, but it lasted only a couple weeks. Then I had to make a major decision, should I go ahead with total hip replacement surgery? This was not quite the 50th birthday surprise I was expecting. I knew my situation was unique and made the surgery more complicated than a regular hip replacement. I really felt that was the best choice for me. The big bonus was that my surgeon would try his best to lengthen my short leg (one-inch leg difference). I was very excited about that possibility.


Hip replacement surgery went well, though my femur splintered, which I knew could happen. I had weight restrictions because of the splintered femur and the leg lengthening, which meant I had to use a walker for the first six weeks. Then I used a cane for another 6 weeks until I felt comfortable walking. I was told the recovery would be about one-year and then my doctor changed it to 6-months because he said he knew I would be tenacious about recovery.
I needed to wait 4 weeks post-surgery to hop in the pool. I really missed my athletic club during my month off from swimming. Not only am I friends with swimmers, but other members as well. They are my second family. I rarely miss a day in the pool. I started back gradually by swimming 1000 yards and slowly increased the distance. Not only was I swimming laps in the pool; but water walking, water jogging and PT exercises as well. It was early summer, and I spent many many hours in the pool (we have an above ground pool at home). I spent at times up to two hours a day of water walking, which involved reading a book that was on the float and walking in circles. I was also able to do my first open water race 2 months after the surgery. I still was not up to speed and needed assistance getting out of the water and walking to the beach but was thrilled to be able to compete. I was able to do 5 more open water swims in 2017. I knew the recovery would be long, but it was going so well. I truly believe that all my water activity shorted my recovery time significantly.


What made me happy was doing underwater dolphin kicking and when I looked at my feet, it was so cool to see my toes line up evenly. It made me appreciate what I went through. Plus, I could buy any shoes I wanted and did not have to examine shoes to see if a shoe lift would work. I was the happiest about that because I thought I would always walk with a limp.
I continued to do well after the surgery. I was even written up in the Froedtert Today magazine a year later. I had a great swim season in 2018 and did very well in my open water events. I did a 15-mile swim called “Border Buster” in Vermont in July 2018. Lake Memphremagog is on the border of Vermont and Canada, so we swam across the border into another county. In August, I went on an 8-mile walk with my girlfriends along Lake Geneva (Wisconsin). I would have never done this prior to the surgery because I would have never made it. I also went to a big Milwaukee festival called Summerfest that summer. My girlfriends and I were talking about why it has been so long since we came, and it was because I could not have walked that much before. I didn’t think of the hip issues anymore, I had put that chapter of my life behind me…….or so I thought.

I had my follow-up the next month (September 2018), this was actually 16-months post hip replacement surgery. I was asked questions about my physical activities and I explained all was good. Then my doctor pointed out his concern, there was a shadow on the x-ray showing that the implant has moved. I didn’t notice any pain associated with the hip (though upon reflection there may have been some red flags). He told me to be aware of thigh pain and not dismiss it as something else.
I was surprised and concerned after that appointment. It never occurred to me that it wouldn’t work out for me. We discussed coming back in 6 months to see how the x-ray looked.
I went on a trip soon after that and returned to notice the start of thigh pain. After a couple friends asked me about how my hip was doing (no one asked in so long, but apparently, I was limping again), I made an appointment with my doctor one month after I last saw him. I am glad he mentioned to be aware of thigh pain because I would have dismissed it as something else and I am sure it would have taken me awhile to figure out it was related to the hip. The x-rays didn’t change, but it was apparent that something needed to be done. Three weeks later I had the revision surgery on November 5th, 2018. Prior to surgery, there were uncertainties on the recovery. It all depended on how the hardware came out, if it came out easily, then a quicker recovery. If he had to break the femur to get it out, then it would be a longer recovery. Of course, there were problems getting out the old stem and the femur had to broken to get it out (he spent 2.5 hours trying to get out the old stem).


The surgery was over 5 hours long and I now have a longer stem (about 8 inches long instead of 5 inches). With the femur broken, I was not able to weight bear for 6 weeks and used a walker again.
The recovery from this surgery was different than before, the scar was almost double in length (higher and lower), which meant sitting was difficult. I spent most of the first 2-3 weeks laying down with the couch only slightly reclined. Pain was mostly in the lower femur (because the new stem was longer). I went back to work part-time at 5-weeks, which may have been a week too early because I still was not sitting comfortably yet.
I was extremely happy to be back in the water 1-month post. Everyone at the club who knows me noticed the smile on my face to be back. For me swimming is not only a physical activity but is also a part of my rehab. I started out gradual again with the swimming. I would use the pull-buoy for the first 2 weeks (which is foam piece you put between your legs) to work on the upper body (this prevents me from kicking). I actually showed the doctor a video of me swimming with the pull buoy prior to surgery so he wouldn’t have concerns about me back in the pool. I was back to my normal distance of 4 miles a day in about a week. Of course, I was not breaking any records, not doing any timed sets and not doing flip turns. That will all come with time. At my 6-week appointment, everything looked good so far and I am hopeful at 3 months it will look good too.


After having two hip surgeries in a year and a half, I would encourage others to look at “weekly” improvements, not daily. It is difficult to see daily changes, but easier to notice the weekly changes. Each week I would see improvement in my sitting, moving around, walking and bending. I was often asked how I felt about having another surgery so soon. Of course, it was not what I had planned in life, but I feel there are much worse things out there that people struggle with daily. This for me, was only a bump in the road of life. My husband did mention to me recently how proud he was for how hard I worked at the recovery and how well I took this second surgery.

Swimming has taught me lifelong lessons, not just in the pool, but outside of the pool as well. The water will always be my “happy place” where I can escape the real world, clear my mind and push my limits to train for those crazy marathon swims. Those mornings where it would feel great to stay in bed, swimming teaches dedication and hard work. Most non-swimmers can think of something else they would rather be doing than follow a blue line in the pool for hours. I never get bored of that line in the pool; it will always be there for me. Swimming taught me discipline, commitment and goal setting. Commitment that can sometimes be obsessive at times. I love to have a big swim planned and have months to prepare for it. Without the many hours spent to meet these goals in the pool, I wouldn’t know what hard work feels like and to go after something you really want to accomplish. These characteristics will carry me through the rest of my life and helped me with the recovery of my hip surgeries. I am not sure if I chose swimming or swimming chose me. I think it goes both ways, but whatever way it is, I am lucky!





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May 1, 2020 Ema

Ema

Hi, I am 44 and only been diagnosed with hip dysplasia. It make so much sense through my life. I was brought up by my...

Hi, I am 44 and only been diagnosed with hip dysplasia. It make so much sense through my life. I was brought up by my grandmother and from an early age I was constantly aching tired and generally unwell.

My mum said I was a wingy baby when I was born. when I got to 12 years of age I had a real passion for dance and this is when y aches and pains escalted, I was taken the docs and I was put in Ibuprofen the big pink tablets daily, It kind of eased it but the more active I was the more I ached. When I was 15 I went to see a specialist and he said infront of my nan its in her head, xrays were done but it was in my head. He could not see anything. So off i was sent on my way.

I had a career in dance became a teacher and got into a dance company, al the time I was having terrible aches and pains, having operations for my bones in knees etc. fast forward years of medication physio, tens therapy EVERYTHING. then I was pregnant at 22 I was in so much pain I was admitted to the hospital at 34 weeks, I could not move. I had to have help to the toilet. at 38 weeks my daughter was born, That put me off having anymore kids.

I was still going to the doctors being referred and they found I had osteo-arthritis in my lower back but still no diagnosis of hip dysplasia. I was 24. I decided that I did not want anymore kids and fought for sterilization. A BLESSING. I was living in Sandbach cheshire uk at the time and was referred to have cryotherapy freezing of the facet joints in my lower back, i had this three times but still no diagnosis, For years I would go to the doctors and they diagnosed me with all sorts, One was Fybromyalgia, I was fuming and said NO your missing something, so I kept fighting I wanted answers I was doing my own research as I have a brain.

In 2014 I had a high tibial osteotomy in my left leg and it was due to the dis-alignment of my hips, but STILL NO DIAGNOSIS. until I went to my doctors about swelling fingers and the aches. she referred me to the reumatologist and after he examined me he said you need an MRI on your hips this was the first time EVER I had MRI, they found I had a labral tear discreetly in my hip socket, so he referred me to the orthopeadics, (in wales) he looked at my case and referred me to a Top specialist (in England) He urgently asked to see me the next day and sent me for a xray and then it came out that it was hip dysplasia. From here I am either going to have the tear repaired or hip replaced.

I am confident that now I can get on with life happy. What I have remembered the most is how people made me feel, I was a liar I was lazy and that my illness was not in my partners life plan. If this story has hit a cord with you, remember this you are the one that knows your body, if you have a child you know your child. You fight for what is right.





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May 1, 2020 Mariam

Mariam

Hi. I was diagnosed with hip dysplasia since i was born. Im 22 years old and im from Georgia (country). Me and mostly my parents...

Hi. I was diagnosed with hip dysplasia since i was born. Im 22 years old and im from Georgia (country). Me and mostly my parents where dealing with that my whole life. When i was born nobody knew that i had dysplasia till my grandma noticed. she knew it because my cousin was born with same diagnose. I started walking pretty soon so she noticed that something was wrong with my hips. My both thighbones were not in the hipbone sockets. So doctor’s suggested surgery but my parents didn’t wanted. my cousins had surgery and now she has pain when she grew up. they decided to fix it with massages and fixtures.

I wasn’t able to run or playing sports till 4 years. I don’t remember that i was struggling because of that. because i had lots of toys and they carried my outside on hands. so it wasn’t that bad. after those years my both feet were great. Like nothing happened. Doctors suggested not to have really crazy life like no jumping but i was little and i didn’t cared about it. and after 14 years my left thighbone came out again. I didn’t knew that it happened. i just had pains and i was hiding it from my parents. i didn’t knew that it was something bad. It was getting harder and harder to walk some long distances. and i was walking like duck. so they noticed my crazy walking and i told them and when they took x ray it showed that my left side wasn’t ok. but my right tight is totally fine.
I had two surgeries. Firs they sticked some nails in my hips (surgery was 7 hours long) I was supposed to stay in bed for 3 months in one pose and don’t move. In one year they took out those metal things and i started to learn how to walk again. My left feet is shorter now and i walk way worse than duck but it doesn’t hurt me anymore. Im learning how to walk better and i have some special lifter in my shoe. It not that bad actually.

My parents made great decision when they say no to the surgery for the beginning because my right leg is totally fine and its helping me. I never had complexes about that (even when one of my classmates was laughing at my walking) still lots of people likes my and i have lots of friends. and its great way to start conversation haha.

One thing that im sorry about that my parents had some hard times. they were nervous about of me and they had some hard times with money because of massages surgeries and rehabilitation. Im so thankful and it helped me to appreciate my parents way more. They are best parents i could get. They are one and only reason that i didn’t had really hard times with my hip dysplasia. And that im really successful woman with great job, great friends and great boyfriend. they did best job. I hope i will pay them back. P.s sorry for my English.





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May 1, 2020 Rhonda

Rhonda

I was diagnosed with bilateral hip dysplasia in July 2017. I had struggled with what I thought was a groin injury for about a decade,...

I was diagnosed with bilateral hip dysplasia in July 2017. I had struggled with what I thought was a groin injury for about a decade, but it became much worse in the year prior to my diagnosis. Over time, the pain moved more into my trochanter area and the muscles surrounding the hip joint. It never occurred to me that I might have a problem inside my hip, until a stone turned under my foot during a hike and I felt a shooting pain sear through my right hip in May 2017.

By the time of my diagnosis, I had tried many different therapies to heal what I’d always thought was a soft tissue injury. But my pain and disability kept getting worse, and I could barely walk. I’ll never forget staring at the X-rays with my surgeon and realizing there was nothing left of my right hip joint. By the end of the first appointment, I was preparing to have my hip replaced and trying to deal with the fact that the other one was going to have to be replaced too. I was 51 years old.

My right hip was replaced on September 20, 2017. It was a difficult and painful recovery that took much longer than I’d anticipated and some of my pain never went away until we figured out what was causing it. By December 2017, my left hip was failing. I figure it decided it had carried me long enough and it was done. I had my left hip replaced on May 16, 2018. That was my miracle hip! I was walking without aids in 4 days. I had so much less pain and difficulty that it was amazing. My physical therapist told me my first recovery was one of the toughest she’d seen and my second was one of the best. They say no two hips are alike and that certainly was my experience.

But after the second replacement, it became clear what was causing my difficulties on the right side. I’d had a cerclage cable placed around my femur to support it after my first replacement. My surgeon was concerned that the femur may have fractured, since it was already distressed from having waited so long. The cable is made of twisted wire and looks like a zip tie you would use to hold together electrical cords. It has a sharp end and rough edges on the clamp which were poking into my muscles. When I flexed them, you could hear them snap over the end of the cable! The doctor told me the cable might bother me and if it did, he would remove it. I had the cable removed on October 31, 2018.

It was amazing how fast everything changed after that. All my pain disappeared finally! I was able to walk up stairs and put full weight on the leg while doing yoga and Tai Chi without pain. I healed very quickly and within four months was back to all my normal activities. I am still regaining strength as of this writing, particularly in the atrophied muscles on my right side. I now have even leg length for the first time in my life. My right leg was always about ¼ to ½ inch shorter. I’m also no longer duck footed! I can’t really tell that I have implants at this point. The one thing I notice is that my point of balance, for example in one-legged yoga poses, is now out to the side. I realized I always hugged in to the midline of my body, because I didn’t really have hips out there to hold my weight. It’s a trip relearning these poses!

When I read the stories on this site, I am thankful I got 51 good years on my deformed hips before they gave out. When I was diagnosed, I was old enough that replacement was never questioned and that fixed everything. Within a year and 3 months after my diagnosis, I went from dysplastic to bionic! I am grateful to my skilled surgeon, his assistant and my PT’s for helping me get my life back. It is truly a miracle what modern medicine can do these days. I was up and walking the day after both replacements with a walker. I barely had to use the walker for my second replacement.

I guess my big takeaway was that I wish I’d gone to an ortho sooner. I tried rehabbing for too long and caused unnecessary pain and difficulty for myself. My second replacement was so much better because I didn’t wait too long on that one. I also wish I’d had that cerclage cable taken out at the beginning of last summer instead of the end. It caused me so much grief that I could hardly hike last summer, and it was so easy to remove.

For those of you who may be just embarking on this journey, or who may have replacements in your future, I want to say, “Don’t put it off too long. They can fix dysplasia and you can go back to all the things you love.” (Though you might want to stop the high impact sports…) I am now able to walk 3 miles regularly, swim 1000 meters 3-4 times per week, cross country ski 3 miles (including back country skiing which involves breaking trail through fresh snow), dance, lift and carry 25-50 pounds, go up several flights of stairs, and do yoga and Tai Chi.

When I was first diagnosed, I found this site to be incredibly helpful. It was especially helpful to find people’s blogs where they talked in more depth about their experience. It inspired me to start my own blog, which chronicles my journey from the beginning to now, complete with photos and video footage. You can reach it at: https://rhondaashurst.com/category/hip-adventures/. This is a non-commercial site and all the information is free for you to download and use as you wish. I put all the tips I have in a PDF called “Rhonda’s Hip Tips”, which you can find on my Resources page or at the top of the Hip Adventures theme.

Sending a big hug out to all my sisters and brothers out there dealing with dysplasia. This is, thankfully, a fixable condition. Find a good surgeon and PT’s to help you. Be good to you. This is a tough journey, but it’s worth taking and being able to walk. Hang in when you feel discouraged, it will pass, and you will do what you love again





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May 1, 2020 Tina

Tina

Hello fellow Hip Dysplasia Family!  I am very happy that we have the Dysplasia Institute that has made it possible for people to share their...

Hello fellow Hip Dysplasia Family!  I am very happy that we have the Dysplasia Institute that has made it possible for people to share their experiences and exchange information on this condition. I used to Google this condition for many years but I just to used to get information on Dog Dysplasia.

I was born with congenital hip dysplasia on the left leg in Africa. Back then, they wanted to experiment on my leg and my father refused. I am happy that he did coz I would be in a wheel chair today.  I am in my earlier fifties and the hip has been good to me with no symptoms. I wear an orthopedic shoe since the left is shorter by 1.5”. I was able to carry two babies to full term. I saw a specialist 10 years ago and he recommended a THR coz of my deformity.  Recently, I have started to experience sharp pains from the hip. I have been taking pain killers but I can’t continue on ibuprophen. I am looking around for adult Specialties who are skilled in deformities. I live in DC area and I am willing to travel within the U.S for care. I am hoping my leg can give me another few months as the surgeries will render me immobile and I am just recovering from some other unrelated surgeries.  Life can be very challenging at times.

I have the following questions:

  1. What is the average time of recovery for THR. Can one work from the bed while recovering? I have flexible job that can be done remotely.
  2. Is the pain manageable with pain killers?
  3. Does the pain linger even even after one year?
  4. Is physical therapy painful in the beginning?
  5. Is someone on meds for entire time on bedrest
  6. Did people install stairwells after surgery? I am now in fear of working on these new sockets
  7. Can someone share their experience of Mayo clinic in private. I understand this is a public forum and people may be unwilling to share their experiences.
  8. After hip replacement, did the pain go away completely?
  9. Has anyone been using CBD cream for inflammation and pain relief? I hear great testimonies.




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May 1, 2020 Abby Wheatley

Abby Wheatley

On the 20th of July 2018 I was told the heart-breaking news I had Hips Dysplasia and needed another operation. This was one of many...

On the 20th of July 2018 I was told the heart-breaking news I had Hips Dysplasia and needed another operation. This was one of many procedures i have had to undergo to try to rectify my hips. When i was told the diagnosis i was relieved as i finally knew what was causing me so much pain but also very devastated that this was my life now. There were days where i really struggled to even walk due to the amount of pain i was in. This made me feel very down and i was always in tears.

I was told to go away and have a think about this operation but I was informed this operation was a last resort for me as all the other alternatives had been exhausted. I was about to undergo a surgery that is very rare as only a handful of surgeons in Europe can perform this. The surgery is called the Peri-acetabular Osteotomy and this is only performed several times a year.

On the 14th January 2019 i was going into hospital to have the operation done to hopefully give me some relief from my hip pain. I was so scared that is was going to fail again but i had to put my trust in my surgeon. i cannot fault the hospital in anyway as they were amazing and so supportive as i have always experienced there. When i came to in recovery i was quite poorly and very tearful as i knew this was going to be a very long and challenging recovery.

Day by day step by step i am making good progress although its very slow. I am still having to use my crutches to help me walk and also using a wheelchair when i go out on a long day. I hate the fact i have to use this it as i hate people staring and judging. I have a long way to go still of this journey but i keep going because of the love and support from my family and friends. Also i have a blog that i am doing everyday which gives me something to work on whilst recovering and hopefully it will help others going through this. You can visit my blog here: click here.

Thank you for taking the time to read my brief story. i hope i can help many people.





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May 1, 2020 Suzanne

Suzanne

What a wonderful site. I think I have you all beat in age. I am soon to be sixty born in 1959. I have an...

What a wonderful site. I think I have you all beat in age. I am soon to be sixty born in 1959. I have an interesting story to share as it was told to me. My parents were stationed in Germany and I was born there. My mother noticed that when she changed my diapers I didn’t kick my legs. I was the third child so she was an experienced Mom. The Canadian doctor on base told her there was nothing wrong with me and it was all in her head. A young officer, who was also a translator, took my mother aside and offered to take me to a German Doctor off base. At this time in history I don’t think medical knowledge was shared internationally as it is now. At 6 months of age I was put into a body cast which apparently allowed blood flow to the femur head (so I was told), and following that braces for about a year. A side note. My father took me to the welding shop with a few of his buddies and they drilled into my cast putting castors on both knees and one on the chest. Apparently after pulling this heavy cast around for weeks I’d built up a good set of guns. When he set me down, all proud of himself, I miss judged and heaved so hard I went careening down the hall and crashed. My mother, furious no doubt, made him take me back and removed the castors. I think I needed a new cast at this point. Men! LOL
I ran and jumped and played like any normal child. I used to have to go to the hospital every year for an examination. I was told at one time that I was one of the first Canadian children cured of this affliction. My mother, grandmother and great grandmother all had congenital hip dysplasia.
Now comes the familiar thread I see in all of the stories posted here. At about 50 I started limping with over exertion or long distance walking. Now I have been diagnosed with “Chronic bursitis”. The Dr. is wonderful but seemed to dismiss my history and says they are not related. I beg to differ. I demanded a full MRI of the hip. Get this. I have also recently had 2 small basil cell skin cancer spots removed and the Doctor in Nuclear Medicine says. “That qualifies you for a TOTAL CT bone scan. Who knew this was policy in Canada? I bet many don’t.
Some times the pain in my hip is so bad I can’t sleep. That wrecks havoc on your over all well being.
Results in a week. I think the disorder also affects the ligaments and soft tissue surrounding the joint. No one seems to talk about that.
I do believe that researchers could learn a lot from my generation or our generation and the future of other born with this anomaly.
This sight is primarily meant for parents and babies born with this and I think it could use a much more comprehensive and in-depth look at adults and their concerns and issues.
Thanks for listening.
Suzanne





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May 1, 2020 Samantha’s Story

Samantha’s Story

Samantha was firstborn and female, but didn’t fit into any other risk factors for DDH. She was checked before we left the hospital after her...

Samantha was firstborn and female, but didn’t fit into any other risk factors for DDH. She was checked before we left the hospital after her birth, but nothing was found.

At her 8 week baby checkup, the nurse found a clunk. We didn’t really know what this meant. The nurse told us to go to our GP. She mentioned plaster and traction, and referred us to a physiotherapist.

The physiotherapist was lovely and kind. She fitted Samantha with a Pavlik Harness and taught us a few things about the condition. I researched on the internet, but ended up more confused than ever. There didn’t seem to be anybody I could talk to about it, that had been through it.

Samantha’s DDH was so “severe” that it hadn’t been able to be detected at birth; they look for a clunk, but there was nothing to clunk with. She had seemingly no socket.

She stayed in the Pavlik Harness from 2 months old to 8 months old. Every ultrasound visit, every orthopedic visit, every physio visit was a case of feeling hopeful, then crushed. I anticipated it after a while, but it never stopped those feelings.

Finally it was decided that the Pavlik wasn’t working any more, so they prescribed a Hewson Brace. I don’t know what sort of difference this was supposed to make, but I *did* know we could take it off sometimes for baths and for that I was grateful.

She wore the Hewson from 8 months until 1 year old. At that time she was pronounced “good enough to go without.” For a little while afterwards, we had followup x-rays. However, the last one, at about 15 months old, looked no different from a normal hip.

Today, Samantha runs around like crazy and can’t be stopped. She doesn’t need x-rays or followups.





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May 1, 2020 Gabriella’s Story

Gabriella’s Story

Although I prepared for my baby’s arrival for months, nothing in my prenatal visits, mother-to-be emails, or What to Expect When You’re Expecting book prepared...

Although I prepared for my baby’s arrival for months, nothing in my prenatal visits, mother-to-be emails, or What to Expect When You’re Expecting book prepared me for having a daughter with hip dysplasia. During the routine pediatrician exam shortly after her birth, the doctor noted that Gabriella had a “slight click” in her left hip. He said he would schedule a follow-up appointment at the local radiologist’s office if the click was still present at her one week-old appointment. One week later, there was still a click.

In the two weeks that followed waiting on her ultrasound, I thought very little about her hip. The doctor previously mentioned that often the hormone Relaxin remains in the infant’s system for a brief period after birth and could be to blame for the click. My husband and I bundled her up in early March for a trip to see the radiologist. My worry was minor compared to the anxiety I felt over her being past her due date. The nurse called her name, and we went to the room where the doctor pushed and pulled on her small legs and tiny hips. Then, in a very matter of fact tone, told me my first-born daughter had bilateral congenital dysplasia of the hip (bilateral CDH). Not only was I shocked, the burning sensation of frustration, confusion, anger and disappointment simultaneously welled up inside of me. No one, not one person, in the entire gamut of medical professionals who had spoken with me in the last 8 months had even vaguely mentioned “hip dysplasia” to me. Why not? Why didn’t I know this was a possibility, but yet I am forced to confront it?

In all my fantasies of holding a perfect little baby, not one of them contained a picture of a Pavlik Harness. But at 3 weeks old, the physician’s assistant placed my daughter in one.

The diagnosis of CDH had been confirmed by the head pediatric orthopedic surgeon at the hospital; my daughter had mild dysplasia of her right hip, and moderate to severe dysplasia of her left. When she was fitted and placed in the harness, I cried uncontrollably. I was certain her diagnosis was a direct result of something I had done. After all, I was her mother. I carried her, I nourished her, I rocked her. I had not had dysplasia as an infant, and she was not born breech. Nothing made sense to me. But the reality remained that this condition can affect the children of even the best of mothers. Hip dysplasia is a problem with the formation of the hip joint occurring mostly commonly in first born girls – first born girls just like mine.

Since Gabriella had CDH, she had to wear the Pavlik Harness (which we referred to as her “bungee jumping suit” for other children who asked what it was) twenty-four hours a day, seven days a week in an effort to correct the angle of her hip and deepen her hip socket, the acetabulum. The acetabulum index, or AI, became a focal point for my husband and me. The PA wanted the AI to increase to 63°, an angle number considered in the normal or acceptable range following treatment. Our expectation was that after a few weeks of remaining in the harness, the socket would deepen, the AI would increase, and the harness would be removed.

In fact, the harness was removed and replaced with a foam Rhino brace shortly before she turned 3 months old. A Rhino brace would now allow for Gabriella to return to normal bathing, and the brace fit over her clothes instead of underneath. While it looked like she was wearing a huge foam diaper, a dress slightly larger than she needed made the brace hardly noticeable. While I didn’t mind if anyone saw the brace, I ached when others gawked at her as if she were defective. On the contrary, she was growing like a weed and never seemed to notice her brace. She smiled, cooed and played like every other baby her age. The only adjustment was learning to sleep in the Rhino instead of the harness.

The adjustments as parents were much harder than anything our daughter felt. We learned how to choose clothes that fit, to answer questions of curious strangers, to pray more often, and to find the cheapest gas stations on the 200 mile one-way trip to the doctor. We learned our way around the hospital, and visits became routine. During the bi-weekly appointments for adjustments to her harness and repeat ultrasounds, her hips appeared to progress well. While the right hip had reached normal range, her left was farther behind. The percent coverage of the femoral head increased from 25 to 50 on the left side, putting it in the normal range. However, the AI was still at 58 and needed to be 63. That initial frustration from the very first visit returned. Gabriella needed to remain in the Rhino brace as a last resort before considering surgery as a treatment option.

The surgery the doctor referred to as a possibility at her next appointment was not something we wanted to hear about. Gabriella was only 13 weeks old. The next pieces of information fell on my deaf ears as I slightly when numb. My husband explained it to me later in these basic terms. The brace appeared to no longer be working, and according to the X-ray, a psuedo-acetabellum was forming on the left side. The PA said she would give the information to the head pediatric orthopedic surgeon, but Gabriella would most likely need an open or closed reduction and a spica cast for 3 months. Due to the distance being prohibitive for a quick return visit, she said she would call us in a day or two to let us know the doctor’s decision.

The phone call was not what we had hoped for during those two days. We thought she had been progressing so well and after being in a Pavlik harness for 3 months, she should be fine. We began praying fervently and asking God to heal her, completely or through using surgery. Our meeting with the surgeon was set for June 1st, and the arthrogram followed by closed or open reduction, for June 2nd. The reduction is closed if the surgeon can maneuver the hip into the socket, and open if an incision is required at the top of the thigh to cut ligaments and then move the hip into place. We requested that the X-rays be repeated on the 1st, and then we met with another surgeon. He viewed her X-ray and said had we not told him it was the left hip, he would not have known. He continued by saying based on her physical exam, he felt no subluxation and no dislocation of the hip. Then we talked to the head surgeon. He said based on her history and X-rays alone, he was 90% certain she needed a reduction surgery and spica cast. However, after his exam, his certainty of a cast was 60%, but that neither an ultrasound nor X-ray was capable of showing the femoral head at her young age of four months. Thus, he would perform the arthrogram and if the hip was not stable, he would continue with reduction surgery so she would only be under anesthesia once. He left the room for my husband and me to discuss whether to go forward. I had complete peace about doing the procedure. I knew in my heart God had healed her.

The next morning we headed to the hospital. She stayed fast asleep until time for her procedure. We put her little surgical gown on her as we answered questions, and then I had to hand my daughter to the nurse at 10:00 a.m. for anesthesia. A tube was put down her throat, and she was put on a ventilator. Her small body had to be totally paralyzed while the surgeon injected contrast allowing a clear view of the femoral head. I must say here that the hardest thing I have ever done in my life to date is give my little girl to a nurse, trusting God that she will come back exactly the same while beating back the mental battles of the risks, the surgery, and the potential cast. The surgeon did promise that he would talk to us immediately after the arthrogram to let us know whether the hip required surgery and a cast.

A very long 40 minutes later, he came out and sat down in front of us. He simply stated, “It’s perfect. There is nothing I can or need to do for her. The hip is exactly where it should be.” Of course, I burst into tears realizing that God had given us the miracle for our daughter that we had asked of Him. We had already determined in our hearts that, in facing our giant as parents, we would praise Him if he healed her, and we would still praise Him if he healed her using surgery.

Regardless of what you believe in or do not believe in, this story is a reality for my husband, for me, but most of all, my daughter. She continued to wear the Rhino brace only at night until February 22, 2010, eleven days after her 1st birthday. However, she has been walking since she was 10 ½ months old, and nothing slows her down. She runs, jumps and plays like any child who has not had hip dysplasia. I am so thankful for the treatment she received by her pediatrician, her PA and her surgeon. Whether by harness, brace or a spica, if necessary, hip dysplasia can be treated successfully if caught early. My hope is that each of us will take part in educating the public, supporting other parents and children, and raising awareness of hip dysplasia, for the benefit of all children who will run, jump and play one day soon.





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May 1, 2020 Emma’s Story

Emma’s Story

Emma was my first born and was breech. My doctor recommended a c-section at 39 weeks, when by ultrasound, we could tell she would be...

Emma was my first born and was breech. My doctor recommended a c-section at 39 weeks, when by ultrasound, we could tell she would be a difficult delivery. When her pediatrician paid me a visit later that afternoon, he informed me that both of her hips “clicked” – actually, they were both freely moving out of the socket. He said that an orthopedic surgeon would be visiting me later and that Emma would be fitted for a harness. I was devastated. He informed me that the key to positive results is to diagnose early…luckily they had.

By Friday morning, Emma was wearing her Pavlik Harness. We were told not to remove it at all. I had to wash around it and change her onesie one section at a time. When we went in for an ultrasound at two weeks (her first ultrasound) it was evident that her hips were still clicking and the Pavlik would need to stay on for at least four more weeks.

At six weeks, the orthopedic surgeon could not get either hip to click at all (and he really manipulated her little legs!). He recommended that she wear the harness for four more weeks. Last Tuesday (week 10) her second ultrasound showed no movement (clicking) and that she had “normal” hips. On Thursday, the orthopedic surgeon let us finally take the harness off. We will be visiting him next month (14 weeks) and then following up periodically until she turns one.

The surgeon said that the two most important things about hip dysplasia are: diagnosing early and persistence in wearing the harness (24/7). There is hope!





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May 1, 2020 Madison’s Story

Madison’s Story

After Madison was born, she was checked out by a doctor who noticed that her hips clicked. He explained what this was and we learned...

After Madison was born, she was checked out by a doctor who noticed that her hips clicked. He explained what this was and we learned that it was similar to what our dog had. We made an appointment for Madison to have an ultrasound at a children’s hospital the following week. When we arrived home from the hospital, we searched the Internet and found out all we could about hip dysplasia.

After visiting our Pediatrician we were referred to a doctor at a children’s Hospital. We learned that our doctor was a well-known orthopedic doctor. The following week, we had our first of many visits with our doctor. He put Madison in a Pavlik Harness, which was supposed to keep her hips in the proper position.

The next few visits to the doctor were hard. Madison would get mad during the ultrasound and kick her hip out of socket. After seven weeks our doctor decided that the harness was not working and said we will wait one month until Madison turns 3 months and then put her in a cast. We were scared. We felt that we were worrying enough, so we decided not to tell our families until after our next visit.

My husband and I spent the next month getting used to Madison being out of the harness and doing all the things with her that they could not do before. At the next visit the doctor gave us wonderful news, Madison’s hip was getting better on it’s own! We were so happy we had a 4th of July party to celebrate!

We still visit our doctor to make sure the hip is growing properly. Despite all that Madison went through, she was not slowed down. Two days after the harness was taken off Madison started to roll to her side.





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May 1, 2020 Meghan’s Story

Meghan’s Story

Meghan was diagnosed with Developmental Dysplasia of the Hip within moments of birth. She had the problem in both hips – the left less severe...

Meghan was diagnosed with Developmental Dysplasia of the Hip within moments of birth. She had the problem in both hips – the left less severe (described as a click) and the right worse (described as a clunk). She was first born, female and breech (three of four higher risk factors). She was frank breech for the last 3 months of pregnancy and delivered by c-section at 39 weeks. We brought her home from the hospital in a Pavlik harness and the doctor gave us 90% success rate.

After a few weeks, Meghan stopped moving her right leg and the harness was removed for 2 weeks until she started again. This went back and forth for a couple of months until the Ortho said it was time to move to the next procedure. The left hip was fixed but the right one was still completely dislocated. A hip spica cast was applied when she was 4 mos. old and she wore it for 10 weeks with a change at 5 weeks. Again, Doc gave us 90% success rate.

Unfortunately, closed reduction failed and she underwent open reduction at around 9 months. It was discovered that there was no abnormality in her hip structure but the socket had filled with fatty tissue and had to be cleaned out. After three days in the hospital, we went home with a new spica and a success rate of 95%! The Ortho was very positive that this would work – his words were that there was no reason for it to fail.

Five weeks later, we went back to the hospital for what we thought was a routine cast change only to find that the hip was still dislocated. We were devasted.

Since Meghan had spent 4 out of 10 months in a spica or harness and could not even crawl, our Ortho wanted to postpone further treatment until she was 1 1/2 years old and potentially walking. Our last hope of repairing the problem is with a procedure called Femoral Osteotomy.

Meghan’s osteotomy lasted 3.5 hours but did not require a blood transfusion (as originally anticipated). Her thigh bone was cut completely in half and the top part (with the ball) was rotated until there was a good fit into the socket. They took a slice from the bone and put it at the top of the socket – this stimulates growth and helps to prevent the ball from slipping out of place. They then reattached the femur (with a pin inside/plate & screws outside) so that the leg was pointed correctly. There was an approx. 5″ incision made across her hip and another approx. 6″ down her thigh. The doctor said everything looked good but he seemed somewhat reserved considering our past failures. Meghan was in severe pain for 2 days and was having some breathing problems from putting a tube in her throat during surgery. It was really tough to see her suffering so much. Within 2 days, she started drinking on her own so they removed the catheter and later the IV. The next day she was acting like her old self again although she didn’t have an appetite. She continued to take pain medication for 1 week.

This cast was shaped different than before and car seats were not an option so we were loaned a funny looking harness from Easter Seals. It straps the child flat on the seat laying down. Since transporting her was so difficult and the cast was so awkward, we elected not to put her back in daycare until after the cast came off. My hubby and I alternated time off from work for the next six weeks to care for her.

Meghan had her cast changed after 4 weeks and was put back in a cast for three more weeks (vs. the expected two). The new cast was significantly different – only her right leg was casted with a 4″ ring of cast around her hips. Her left leg was completely exposed and there was no stabilization bar. It really presented a challenge since all of our gear was designed for the hip spica.

After 3 more weeks, Meghan had her cast removed and everything looked great! The doc said the hip was in place and he saw some normal development/improvement since the last x-ray.

Two weeks later, Meghan went back for more x-rays and was fitted for a brace which she had to wear at night only. The brace was two velcro cuffs with a bar between them and it looked a little like the Pavlik harness. She wore this at night for two months.

At Meghan’s six months checkup post fem. osteotomy she was been deemed “fixed”. She’ll have to be monitored until puberty and still has a plate to be removed but the prognosis is great and we don’t have to see the doctor for a whole year! Her leg is still turned out a bit and slightly shorter than the other but she runs and plays like every other kid her age. The angle and leg length discrepancies will improve with time and should be gone in around 2 years. Each day her mobility and gait improve – most people don’t even notice her hip now. Right now, we’re not even facing therapy and no current prospects of surgery.

2002 Update:

Meghan had the surgery to remove her hardware. She was taken back for surgery at 8:45am and we were on the way home by 1:45pm. She was heavily medicated that day but was on ibuprofen only by the next morning. The only problem we had was trying to keep her calm. Meghan’s doc said that we had to be extremely careful for the first 10 days (especially in the first 4). We were supposed to keep Meghan as calm as possible with no running or jumping. He said that he didn’t think a cast was necessary and normal activity was okay. His biggest concern was jumping — he said a jolt to the leg could cause a fracture but that within 10 days the holes would heal enough that we wouldn’t need to worry. We weren’t able to keep her calm since she wasn’t in any pain but luckily nothing happened. We went for her post op and her x-rays showed that all the screw holes in the bone were filled in and weren’t visible at all.

2003 update:

Meghan went for her annual check up: 2 years post femoral osteotomy and 1 year post hardware removal. She had a standing x-ray, physical exam and was observed walking and climbing stairs. On all counts, the news was great. Her doctor was pleased that her leg angle is almost normal, indexes are completely normal and leg length discrepancy has decreased (although its still around ½ to ¾”). We were surprised at how different her right hip (the problem one) looks from her left but the doc and intern said it looked great. Her doctor said that it will take years for the hip to look normal on x-ray but that she was progressing beautifully. At this point, he does not foresee any necessary treatment in the future but will continue to monitor her with annual checkups until at least 8 – 10 years old.

What we thought would take 8 weeks to fix ended up taking several years and multiple surgeries but we are finally there. Meghan’s was the most difficult case her doc had seen in 20 years of practice but even her problem was able to be corrected and she’s now a normal, happy little girl.

2005 update:

It’s been 4 years since Meghan had a femoral osteotomy. She’s been monitored every 3 – 6 months since then, mostly uneventfully. We were always told that the ball of the femur didn’t sit perfectly in the socket but that it was good enough. We started seeing Dr. A around 2 years ago when her original doc and only surgeon (Dr. N) retired and we got what we thought was a false scare. The doc said that the coverage was getting worse but it turned out that the xray wasn’t taken right (we found out several months later).

At her check up 6 mos. ago, the doc said the same thing — not great but good enough and no further surgery appeared to be needed. When we came back 6 mos. later, we got the news that the coverage was getting worse and if we did nothing, the prognosis wasn’t good (arthritis in her teens and hip replacement early twenties). Dr. A was recommending a pelvic osteotomy before she turns 8. We were devastated as Meghan appears to be fine (no limp, runs a lot, no pain) but were holding out hope that the doc was wrong. I started researching docs in Wash., DC for another opinion but took her to a new doc (Dr. K) here in Richmond, VA in the meantime. After a thorough exam and several xrays, his diagnosis & prognosis were the same but he recommended a femoral osteotomy instead. He committed to send Meghan’s xrays to San Diego for another opinion. He did consult with doctors in San Antonio and doctors at Dupont (one of the other places we were considering taking her). He said that they all unanimously agreed that:

  • pelvic osteotomy would most likely cause more harm than good by making the hip stiff (a pelvic is what the first doc recommended)
  • if anything should be done, it should be a repeated femoral osteotomy
  • before we do anything, Meghan should have an arthrogram to better determine how badly the femoral head is seated and if surgery is necessary or would even help

When I told him we scheduled a consult with Dr. B at a Children’s Hospital in DC, he encouraged me to go to that appt. first (before the Arthrogram). He said if I didn’t hear the same thing from there, I should continue with consultations until I felt comfortable with what I’m hearing. Even though the Arthrogram isn’t that invasive (dye injected into the hip than xrayed), Meghan would have to have anesthesia and she’s considered high risk so he wanted me to be sure. So far, I like Dr. K’s approach and the attention he’s giving Meghan’s case so at least I’ve found a new local doc. Unfortunately, the news from Dr. B wasn’t good either.

Even though not recommending surgery isn’t necessarily a good thing since the long term prognosis doesn’t change, I’d much rather make that decision than to put her through anything else that may not work. We aren’t really any better off than we were before but I’m at least starting to get the info. we need to make a decision.

I have told her current doc that I will not make a decision on further treatment for at least 6 months. I need to see another xray that shows the hip getting worse before I believe that it really is. He agreed with this approach.

We are very reluctant to approve any more procedures unless we can be convinced that something will work without doing more harm. All of the docs that have seen her agree that it may be too late and it’s a very frustrating guessing game at this point.

Another 2005 update

It’s been six months since surgery was recommend and Meghan’s xray showed no change or possibly a little better. With Dr. K’s agreement, we decided we would not pursue further surgery unless the hip degraded or Meghan started developing stiffness or pain. We were finally in agreement that no action was preferred since the surgery could make things worse (and put Meghan through trauma that might not even help). The plan was to monitor her every 6 months for changes.

2007 update

Since our decision (against most medical advice) not to pursue surgery. Meghan’s xrays have been the same or possible a slight bit better.

That news finally changed with her recent visit. The hip position is possibly a little better but the ball of the femur is now rounding out to fit better in the socket. Her doctor is so confident that we made the right decision and she looks good enough, we have finally graduated to annual visits!

I know things could change in the future but it is very gratifying to know we made the right decision 2 years ago, even if it was against 5 doctor’s advice.

Meghan is almost 9 now and is a smart, active, rambunctious child. She just finished a Tae Kwon Do class so I don’t believe she seems to be limited by much. We know there will be somethings in life she can’t do (track) but for now, she’s a pain-free happy little girl with two very happy parents!

2014 update

Meghan has started experiencing pain in her hip which is preventing her from being active in physical education in school.  She had an Arthrogram and MRI performed here but because we have exceeded Dr. K in Richmond’s expertise, I took her to Boston’s Children’s Hospital to investigate a possible Periacetabular Osteotomy (PAO) as a way to delay total hip replacement which would be the next step.  Dr. K in Boston said she wasn’t a good candidate and it was a matter of time before she would have to have a right total hip replacement.  He said the amount of pain she was in would tell us when it was time.

2018 update

Well, it’s time.  Meghan’s freshman year at college put her hip to the test and unfortunately, she has been in a lot of pain due to walking around campus.  The only option is total hip replacement.  She is scheduled for right hip reconstruction/total hip replacement on June 14, 2018.  The surgery will be performed in Alexandria, VA and she will spend one night in the hospital.  We are hopeful that she will make a full recovery in time for the start of her sophomore year in college.





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May 1, 2020 Livia’s Story

Livia’s Story

Livia had a normal pregnancy and a normal head-down vaginal birth. Livia’s only risk factors for DDH were first-born and female. Everything was normal in...

Livia had a normal pregnancy and a normal head-down vaginal birth. Livia’s only risk factors for DDH were first-born and female.

Everything was normal in the nursery, however, at her eight-week check-up (in 2000) her pediatrician noticed a “click” in her left hip. This was a Friday. By Tuesday, we had an appointment for an ultrasound with an orthopedic doctor. He told us that her hip was “dislocatable with pressure”, meaning that the hip was in but when you pressed it the right way it would pop out. He recommended a Pavlik harness and assured us that this was a very correctable problem and would like to see her in four weeks. After this appointment I did a web search and found more on hip dysplasia with German shepherds than hip dysplasia with humans. Somehow I stumbled onto the e-group website “Hipbabies” that had been started only four days before. At that time I became the third or fourth member. What a lifesaver!

Four weeks later we returned (it was in 2000 and Livia was now 12 weeks old). She had an x-ray done which showed that the hip was completely out of the socket – the Pavlik hadn’t improved anything. In fact, the hip was worse. This doctor then referred us to a pediatric orthopedic surgeon at the local Children’s Hospital. This was a Tuesday and we had an appointment with Dr. W at the hospital by Friday.

I felt everything was moving too fast, but as I found out later there is a certain time frame where the success of correcting DDH is the highest. Dr. W confirmed that the hip was out of socket and recommended either a closed or open reduction. These are types of surgeries and both involve spica casts. We were scheduled for surgery less than a week later. He explained that he didn’t know which one Livia would need until she was actually under anethesia. When she was completely relaxed he would attempt to place the hip back in the socket without making any incisions. If the hip stayed in then he would just apply the cast (closed reduction). If the hip did not stay in then he would have to make an incision into the hip (open reduction).

Because of scar tissue that had already filled the hip socket, the hip would not stay. Livia had to have the open reduction. An incision was made in her inner thigh and the scar tissue was scraped out. After that, the hip bone fit nicely in the socket and a spica cast was applied.

The spica went from her rib cage to her feet; just her toes were sticking out. Livia had to stay in the hosptial overnight but was doing so well the next day that we were able to go home early. She had the cast on for seven weeks and then we went back to the hospital to have the cast removed and see if the hip was stable (2000). The hip looked good and she didn’t have to have the spica anymore but was moved to a Hewson brace. This was to be on for 24 hours a day for the next six weeks. We were able to take it off for diaper changes and one bath a week. After six weeks (2000) the hip still looked good and the Hewson brace was decreased to 12 hours a day. At the end of the year, 2000 (Livia was 10 months old) the x-ray looked great and we were able to discontinue any sort of brace! Livia is now in follow-up and has to return in April, 2001 for another x-ray as the hip could slip back out. After that, she will continue to have follow-up every year until she is 16 years old.

Update 2001

After an x-ray in 2001, Livia’s hips were pronounced “perfect” by her doctor. She is now on yearly x-ray’s and exams until age 16. In June 2001, a baby brother arrived and after several thorough checks and an ultrasound, his hips appear to be normal.





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May 1, 2020 Kailyn’s Story

Kailyn’s Story

Kailyn was born 2 weeks late following a semi-uneventful pregnancy. I had some minor problems with pre-eclampsia, and as a result was placed on bed...

Kailyn was born 2 weeks late following a semi-uneventful pregnancy. I had some minor problems with pre-eclampsia, and as a result was placed on bed rest 4 weeks prior to delivery. Kailyn was also breech and seemed to be underweight, but this was explained away as an erroneously calculated date of conception. She did turn at about 38 weeks, but she was folded in half, with her feet up by her head. My OB/GYN believed this would work itself out during delivery.

Long story short, my water broke around 9:30 on a Sunday morning and following 12 hours of no progression, Kailyn was delivered by emergency c-section. Come to find out, her placenta had a small rupture for quite some time, explaining her low birth weight of 5 pounds 15 ounces. I thought the worst was behind us… boy was I wrong!

Our wonderful pediatrician was the first to become concerned about hip dysplasia because Kailyn had been folded in half, and I had problems with my hips during the pregnancy. These problems had been caused by an overproduction of the hormone that makes the hips relax for delivery. After an examination 8 hours following birth, the pediatrician confirmed that Kailyn had “loose hips” and fitted her for a Pavlik harness. That would be the first time we were introduced to bilateral hip dysplasia. She then made an appointment for us with an orthopedic surgeon.

We saw the orthopedic surgeon once a month for 5 months. He saw no progress in the development of the sockets, and Kailyn’s hips were both easily dislocatable. Following an arthrogram and a failed attempt at a closed reduction, he referred us to a pediatric orthopedic surgeon at the large children’s hospital in our area. Kailyn was 5 months old.

We arrived at our appointment with the ped. ortho. feeling defeated and scared. As first-time parents we had enough on our shoulders without hip dysplasia, but here we were! The doctor looked over Kailyn’s file and films and said the words we feared most… open reduction. Our first ortho. had mentioned this possibility, but it was in the context that it was rarely necessary. Surgery was scheduled for the following week, and we had no idea what to expect.

Kailyn was in surgery for almost 4 hours. When the ped. ortho. came out to speak with us, he seemed very pleased with how the surgery went. He took us back to the recovery room to see her, and we were shocked at how she looked. Our tiny little girl was completely covered from upper chest to her toes with this huge pink cast. I guess we hadn’t really known what to expect since we had not seen a child in a spica before. It was definitely not what we had expected!

We spent 2 nights in the hospital before Kailyn was released. She was hard to carry (there was no bar between her legs to hold onto), and we had no carseat that she would fit into. We drove the 2 ½ hours home with her strapped laying down in the back seat of our car. What an adventure!

Kailyn would spend the next 13 weeks in the spica. She had one cast change after the first 7 weeks, but other than that everything was smooth sailing. I was so surprised at how happy she was even though she couldn’t roll over or crawl like other babies were able to. We obtained a Spelcast carseat from a local home health agency, so we tried to take her out as much as possible just so she would have some outside stimulation. And I went back to work, so she got to spend time with other children at daycare. She was a very popular girl!

After Kailyn’s spica was removed at age 9 months, she was fitted for a rhino cruiser to be worn at night. We continued to see the ped. ortho. once a month for x-rays to check for progress in the growth of the hip sockets. Before the open reduction, Kailyn’s acetabular indexes were around 40. Following the removal of the spica, her indexes were 36 on the left and 34 on the right. However, that was the last progress we would see.

At Kailyn’s 18 month check-up (9 months following removal of spica), we were told that pelvic and possibly femoral osteotomies would be necessary on both hips. There had been no growth since her first surgery, and it was time to take the next step. Here we go again!

The ped. ortho. gave us a month to get our work schedules sorted out for the surgery. This would be a bigger ordeal than the open reduction, and I would have to be away from work for quite some time. We also needed time to prepare our then wild and free 18 month old for life in “confinement”. There would have to be another spica, and Kailyn would go from weighing 25 pounds to around 35 pounds. We had a lot to prepare for.

The initial plan given to us by the ortho. was to get inside and look at the hips to decide on whether the femoral osteotomy was necessary. Thirty minutes into the surgery, a nurse let us know that the doctor believed only the pelvic osteotomies were necessary. He would work on her left side first, close her up, and we would come back in 3 weeks to do the right side. They said it would be about 4 hours before the end of surgery.

To our surprise, about 3 hours later, the doctor came out to tell us that not only was he done with the left hip, but no hardware was necessary to hold the femur in place. The bone grafts were all the support they needed. He would go ahead and work on the right side that same day.

Another 3 hours passed and we were so excited when the nurse called us to come to the recovery room. Kailyn was very swollen and completely out of it, but both sides were done with no hardware. That meant no more surgeries for us, right? Wrong!

We spent nearly 5 days in the hospital this time. Kailyn had to have a blood transfusion, and it took quite awhile for her caudal to wear off. Once her hemoglobin levels were normal, we were sent home. I thought she would be a bubbly little girl just like after her open reduction. Well, she was having no part of that, and pretty well crabbed and cried non-stop for a week.

We went in to see the ortho. one week post-op. The x-rays told a horrible story… Kailyn’s left femur had dislocated from the socket and the bone graft was lying flat in the socket. Back to surgery we go.

Kailyn was scheduled for emergency surgery 2 days later. This time hardware was used to hold the left femur in place, but the right hip was holding up beautifully. It was good and bad news all in one, but we would still have to have another surgery to remove the hardware. We spent 4 days in the hospital this time, another blood transfusion, and we were sent home.

Kailyn was in the spica for 9 weeks before it was removed. She was now 22 months old. The ortho. opted to leave the hardware in the left hip “just in case”. She would have it removed 6 weeks later with no problems… not even a night in the hospital!

We are now 3 months past the hardware removal. At her recent check-up, Kailyn’s indexes were in the low 20’s on both sides, and the ortho. said those words we all long to hear, “See you in a year.” It’s been the longest 2 years of my life, but one thing is for certain, it was worth every minute of it to now see Kailyn run and jump and roll around just like a “normal” kid.

One year later she had her next check-up. We were sent to x-ray as usual, and with nervousness my husband and I waited for the news from the doctor. He and his assisting physician both entered the room with smiles from ear to ear. Kailyn’s hips were absolutely perfect in every way. Both femurs had wonderful coverage and were completely in socket. She will now be able to do anything she wants to – dance class, soccer, even skating. She’s a perfectly normal little 3-year-old. In fact, the doctor was so impressed with her progress that we will only need to see him every 2 years until Kailyn is about 13-years-old. I can finally breathe a little easier and let Kailyn have the freedom I wish she could have always had. Like the old cliché – we lived happily ever after!





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May 1, 2020 Claudia’s Story

Claudia’s Story

Claudia was born full-term, the second child, of a normal pregnancy. The only problem was that Claudia aspirated meconium while still in utero and had...

Claudia was born full-term, the second child, of a normal pregnancy. The only problem was that Claudia aspirated meconium while still in utero and had to spend 4 days in intensive care. Once home things were fine and not one of the 4 different pediatricians that saw her in the first few days discovered her hip problem.

At her nine months check up I mentioned to the pediatrician my concerns about the way Claudia’s legs, especially the right one, turned out. We were given a referral to an orthopedist, but not a pediatric orthopedist. The orthopedist simply felt her legs and hips with his hands and did not take x-rays. He pronounced her fine and said I was worrying needlessly.

At the 15 months well baby check up I again brought up my concerns. Claudia had been pulling up to stand since she was 9 months old. Yet in all that time from 9 months to 15 months she was unable to take a step by herself without holding on to something. She would cruise around furniture going sideways but never going forward. I found out later that in a child that has bilateral (both hips affected) DDH the inability to take an unassisted step forward is a common sign.

We were referred to a pediatric orthopedist and within minutes of being in the exam room he was able to tell us that he suspected she had CDH (oftentimes called DDH now). Based on his physical exam and all that we told him about the way her legs turned, the inability to walk, etc. he diagnosed her with bilateral congenital dysplasia of the hip with acetabular indexes of 45 degrees in each hip. He took x-rays which confirmed his diagnosis.

Arrangements were made for her to enter the hospital the following Monday for skin traction of her legs. This was on a Thursday. When we entered the hospital, long pieces of a special tape with a metal bar that went across her instep were taped to both sides of her legs from her thigh to her ankle. Over top of this was wrapped ace bandages. The weights were attached to ropes that connected to the bar at her foot. She was attached to the traction for 8 days and was allowed out to eat her meals in a high chair. Other than that she stayed attached to the weights.

After 8 days, Claudia’s ortho determined that her muscles and ligaments has loosened up enough for him to do the operation. Since she was so old when the DDH was discovered, her femurs had been trying to make a hip socket about two inches above the normal spot on the pelvis. In that time the muscles and ligaments tighten up. During the operation the ortho performed an adductor tenotomy. This means that he cut the tendons on the inside of her legs to allow the femur to be placed in the correct spot on the pelvis. He was able to perform a closed reduction because there was no socket at all so there was no place for cartilage to collect. Then he put her in a hip spica cast which went from her armpits to her toes. She was in the shape of a staple.

Six weeks later he changed her casts. It was at this time that he determined that she would need three sets of casts for a total of almost 19 weeks in body casts. One good thing was that each time the casts got smaller- her first cast went to her toes, the second one went to her ankles and the third one only went to her knees, she had spica shorts. After her third cast came off, Claudia’s doctor decided that her acetabulums were still too shallow. Her acetabular indexes were in the low 30’s after 19 weeks of casts. She was put into a walking abduction brace.

Claudia wore the brace 24 hours a day for the first 5 months. After 5 months she was allowed to sleep without the brace, but she was not allowed to stand or put any weight on her legs without the brace. Six weeks after getting the braces Claudia took her first unassisted step. She walked like a cowgirl as we liked to say, but at least she was walking!!

After she had been in the braces for about two months the ortho started talking once again about the possibility of Claudia needing osteotomies. The braces were helping some but there was still a long way to go to get full coverage of her femurs. We continued to have her wear the brace all of her waking hours, but four months after starting the braces it was apparent that no more progress had been made. Her acetabular indexes were 28 degrees on the left and 35 on the right.

2 ½ months later (total of 7 ½ months in the braces), after we had gone for two additional opinions, Claudia had bilateral pelvic Salter osteotomies. In this operation the ortho takes a graft of bone from the rounded hip area. The doctor makes a cut through the bone above where the femur rests and inserts the bone graft. One or two 2-4 inch pins are inserted through all the pieces of bone to hold everything together. Then Claudia was back in a hip spica cast from her armpits to her toes again for 7 weeks.

The osteotomies were not tolerated well by Claudia. The surgery was 4 ½ hours long and anytime she has to have anesthesia for any length she gets very sick. So she was throwing up for two days and she had muscle spasms. The ortho ended up ordering a narcotic to let her sleep which was put into her epidural to help her recover. Once we were released from the hospital, Claudia started to become her old self about 14 days post-op.

She developed an infection in the pins in her left hip. She still has a scar on top of the osteotomy scar on the left side from the infection. Seven weeks later Claudia went back to the hospital to get the pins taken out and also to have the cast removed. Her doctor did not order any physical therapy since he felt that the normal crawling, pulling up, playing, etc. would be enough for her legs.

She started to walk without any help 5 weeks after the pins came out and the casts came off. We were so thrilled, it was something I wondered if I would see. We went back for check-ups every few weeks at first, then every three months, then every six, now she goes for a once a year check-up and will continue to be checked until she has completed her growing. It was a long trying road, but my daughter is now fine. She remembers much of the ordeal, and still talks about it five years later, but she is healed and hopefully will not have any additional problems related to the DDH.





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May 1, 2020 Allison’s Story

Allison’s Story

My beautiful daughter Allison was “officially” diagnosed with CDH/DDH at 6 months of age. At birth she had a “mild” click with the left hip,...

My beautiful daughter Allison was “officially” diagnosed with CDH/DDH at 6 months of age. At birth she had a “mild” click with the left hip, but had an ultrasound and was evaluated by an [adult] orthopaedic surgeon who felt that no treatment was necessary. At her following well-child pediatric appointments no click was present and I breathed a sigh of relief. At her 6 month well-child visit to the pediatrician he heard the click again. 2 days later we had another consult with the original orthopaedic surgeon and had an x-ray and ultrasound done. The radiologist – who is a friend of ours – said that the x-ray showed dysplasia. The orthopaedic surgeon still felt it was too mild to require any treatment. I had had it at this point.

I called a pediatric orthopaedic surgeon with whom my husband was vaguely acquainted, and begged him to see us ASAP. He squeezed us in on a Friday before his vacation as a favor. He took one look at Allison’s films and said she needed immediate treatment which meant 3 to 4 months in a spica cast. I could not believe what I was hearing! He delayed his vacation by a day and scheduled her for a closed reduction that Monday. I had 2 days to adjust to the fact that my BEAUTIFUL, good tempered little cherub was going to be immobilized for 4 months! I cried non-stop… I too was very worried about her going under anesthesia, but my husband is an anesthesiologist so he was able to respond to my concerns and calm my fears.

She had the arthrogram/closed reduction that Monday – the procedure went very well. The cast covered both legs from her nipple level to the tips of her toes. We took her home that evening – she actually slept through the night. She was totally FINE with the cast.

She was checked a week later – the hip was stable (staying in place). She proceeded to have 2 more cast changes (for a total of 3 casts). Each was a little bit different in that the hole for defecation/urinitation was slightly varied in size. The last cast gave us back her feet – it was so nice to see them again.

She was in the cast 2 weeks shy of 4 months. Once the cast was removed she went to an abduction brace for 23 hours a day for 6 weeks. When we went for the follow-up visit after the 6 weeks her acetabular angles were measured and we had 18 on right (the unaffected side) and 19 on the left (affected side). So she was taken down to 16 to 18 hours a day in the brace.

We just had another follow-up last week and everything has remained the same so she is down to nights and naps now. So far our outcome has been really great – thanks to a lot of prayers and a GREAT doctor.





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May 1, 2020 Megan’s Story

Megan’s Story

When we went for Megan’s 9 month well baby check up, we were shocked to hear that her pediatrician wanted us to see an orthopedic...

When we went for Megan’s 9 month well baby check up, we were shocked to hear that her pediatrician wanted us to see an orthopedic surgeon. He pointed out her leg length discrepancy, skin folds that were not symmetrical and he could feel that her hip was not where it was supposed to be. I normally take Megan by myself, but this visit, I had my mother with me and I was grateful that she was there. My sister was diagnosed with bilateral DDH at three years old in 1964 so my Mom had some idea of what I was feeling. Our second thoughts were about the problems my sister had and is still having with her hips. She has been through two hip replacements and she is only 42. I did not want this to happen to my daughter.

Two weeks later we saw an orthopedic surgeon who, thankfully, knew he was not qualified to treat a baby and sent us to a pediatric ortho. We met with him and after a few more x-rays it was decided that Megan would have an opened reduction. When the surgery day finally arrived, Megan was 11.5 months old. We were very nervous, especially me. Megan was cruising along the furniture in the waiting room and I kept thinking about my poor baby being in a spica cast for 6 weeks. After they took her away, we took a walk and tried to eat something. After only an hour and a half, her surgeon came out to tell us that the good news was that he only needed to do a closed reduction. Her hip had gone right into place under anesthesia. The bad news was that she would be in the spica for 12 weeks with one cast change. We stayed one night in the hospital and Megan only had two doses of pain meds while we were there. She was wonderful!

When we got home, we put her down for a nap. When we got her up we were surprised to see that Megan had flipped herself over onto her stomach. Her cast only went to her knee on her right leg and she was already starting to learn how to use it. By day four she was pushing herself backwards and within two weeks she was pulling herself around. She ended up learning how to cruise the furniture and a week before the cast came off for good, she was climbing the stairs!

We were very excited to learn the she would be getting the cast off after 10 weeks instead of 12. She screamed the whole time the cast was being cut off because of the noise. (To this day she does not like loud noises.) Her right leg had sores on it, her left leg had no muscle tone and had layers of dry skin. I immediately gave her a sponge bath. It felt wonderful to hug a squishy baby again. We then went to get her Rhino Cruiser brace which she began wearing 23 hours a day. It took a while for her left leg to gain back strength, but before we knew it, she was learning to walk, with her brace. After 6 weeks in her brace her index had gone down, so her doctor reduced her time to 20 hours. After another 6 weeks her index was at 29 and she then only had to wear the brace when she was sleeping. Her next x-ray, three months later, showed that her hip was staying in place, but her socket was still shallow. Her doctor decided to keep her in the brace, sleeping only, and the next x-ray was to be in six months with one check up at three months. It was a long six months, but on Sept. 30, 2002, 16 months after the closed reduction, her hips were pronounced normal. Both of her indexes were measuring at 20. As I was looking at the x-ray, I actually had to think about which side was the bad side because each side looked the same. It was the most wonderful news! Megan goes back for another x-ray when she turns three. Right now, it looks like there will not be any further treatment. We are keeping our fingers crossed.

June 30, 2003 – Megan went for her three year x-ray. As we were waiting, it was so nerve racking. I kept thinking about what we would do if the x-rays did not turn out well. Her doctor came in with the x-rays saying “We have great news.” Her right index was 14 and her left was 17! We go back in a year for her next x-ray. It was such a relief to see her hips looking so good. I asked the doctor to let me see all of her x-rays since April 2001. I took pictures of them so I have a record of her progress and added them to her picture site. It was amazing to look back at the progress she has made in the past 2+ years. Her hips are looking normal! Yeah!





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May 1, 2020 Samantha’s Story

Samantha’s Story

My pregnancy with Samantha was nothing out of the ordinary. At 7 months, I was at risk for high blood pressure (which I had before...

My pregnancy with Samantha was nothing out of the ordinary. At 7 months, I was at risk for high blood pressure (which I had before I got pregnant anyway) and was put on bed rest for 3 weeks. After that, everything was normal. My ultrasounds were fine with the last one being on Halloween.

Labor for me was quick. Even though Samantha was my first baby, and my husband and I were expecting a long labor – it didn’t happen. My water broke at 2am, by 3:30am I was contracting at 3 minutes apart. I was at the hospital by 4:30am contracting a minute apart and was 1cm dilated. Upstairs in the labor room, at 5am I was still 1cm with contractions coming at a minute apart. About 30 minutes later, they found me at 5cm dilated and a minute apart and decided to have me walk down the hall to my room where I’d deliver. At 5:56am – Samantha was born, all 6lbs, 14oz of her.

A midwife at my OB/Gyn did the delivery. No complications, everything went so smooth that they didn’t even get an IV into my arm (no drugs whatsoever). Immediately after delivery, the midwife checked Samantha’s hips. She said they didn’t feel right, that they were very “loose”. My pediatrician showed up 2 hours after delivery and checked her hips immediately. He confirmed the midwife’s suspicions – Sam had loose hips. It was time for an ultrasound to be safe and confirm what both medical professionals were discovering.

At less than 5 hours old, my husband accompanied Samantha for an ultrasound on her hips. Within a few hours we would know exactly what was wrong. We were later told that Samantha had two dislocated hips. Her hip sockets hadn’t formed properly and we would need to see a pediatric orthopaedist. I began to wonder what could have caused this to happen. According to my pediatrician (and the orthopaedist), this condition is common in first born girls and those of Italian decent (my dad’s side is half Hungarian and half Italian). It’s also common in breech births (which Samantha was not). But before the hips could be taken care of, we had to get rid of the Jaundice.

We were referred to the best pediatric orthopaedist in our area. As matter of fact, he won’t even treat adults – only kids. After two weeks of battling the Jaundice, it was time to find out what to do about the hip problem. First thing to try – a Pavlik harness. It basically went from her back to her toes and kept her legs in a certain position to try to fuse the hip ball and socket together.

After a month, right side fused, left didn’t. The doctor told us we were looking at a Hip Spica cast. Devastated and not knowing anything about this problem, I scoured the Internet and came up empty handed. That’s how my web site got started. My doctor couldn’t even tell me how to care for Samantha other than “trial and error”.

Samantha had to be placed in traction for about two weeks to help the blood circulation to the hip before being placed into the cast for about 3 months. The hip didn’t seem to bother her, as she liked to stand supported and “walk” around with weight on both legs. Nonetheless, we were told that if we didn’t do this now, the chances of Samantha walking later in life were going to be slim and she would be in constant pain.

She was admitted to for overnight observation and sent home with the traction unit to be attached to her crib. A technician came out daily to check her and make sure she wasn’t uncomfortable. Throughout this process, Samantha had “caught on” to the fact that she wasn’t able to move her legs while in traction. We had to periodically take her out for a few hours and give her a rest before putting her back into her crib.

She had to go into surgery to have the cast put on, as the doctor had to nick both tendons to be able to manipulate her legs into the right position. The cast was finally removed after 9 weeks instead of 12 weeks.

When Samantha went for her 12 month checkup, the doctor asked how she was progressing. I told him she was walking and he didn’t believe me. That was until he watched with his own eyes her walk across the room. He told me that she did the impossible, that she must be one very determined child. He told me that she should not have started walking until almost 18 months old.

Today, Samantha is 4 ½ years old. She doesn’t have any visible scars from the tendons being nicked before the cast was put on. She’s in gymnastics twice a week (and I’ve noticed lately that she can really get her legs and hips way out further than the other girls). She swims, runs, rides her bike, and does everything any other 4 year old does.





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May 1, 2020 Taiyara’s Story

Taiyara’s Story

Taiyara was born in Thailand. She was breech the last couple months of the pregnancy and delivered by an emergency c-section. When she was born...

Taiyara was born in Thailand. She was breech the last couple months of the pregnancy and delivered by an emergency c-section. When she was born both of her legs were completely blue which promoted the doctor to request she be checked by a specialist. A specialist checked her legs with an ultrasound 3 days after birth. She was diagnosed with DDH – Both legs were out of the hip socket. Pretty scary not knowing anything about this condition, the doctor first tried to manipulate her legs back into the socket, then checked with a ultrasound – No luck, could not get her legs into the socket. The next step was to wear a pavlik harness for a month.

She wore the pavlik harness 24-7 for 1 month, we went for 1 month check-up and the ultrasound showed both sides were still out. The doctor tried again to manipulate her legs into the socket – Again, no luck. We discontinued using the Harness at that time.

The next step was to try a traction method which per the doctor is the last option before surgery… we tried the traction method, she was in the hospital for 2 weeks. Tried again to manipulate her legs into the socket, again did not work. We tried 1 more week of traction in the hospital, still could not get her legs back in the right position. At this point the doctor is now indicating surgery is the next step – We were scared!

We saw a few doctors for 2nd, 3rd opinions and got conflicting diagnoses. One doctor indicated both sides were in the socket – Another doctor indicated both sides were out. We were confused but ended up going with the initial specialist who had checked her since birth. DDH is not common in Thailand, we later found out that the doctor we were seeing is the #1 specialist in all of Thailand for this condition – He has 15 years experience treating this condition and said Taiyara’s condition was the worst he has seen in all the 15 years. Time was running out so we decided to follow his recommendation. He indicated he was 100% confident the hips are dislocated and told us to just follow him.

Taiyara is 2½ months old, she was put to sleep and had closed reduction surgery to release the groin muscle on both sides. After the surgery the doctor indicated he could only get the reduction on one leg and the other leg was still dislocated – Devastating news but I guess one side being in is better than no side in. She had a cast from the waist down to her toes.

We went back in for check up to see the MRI results…..MRI results show both sides are out again – We were devastated again!! The next step was to take her cast off and put her in the traction again for 2 more weeks, then do another closed reduction surgery and try to get the reduction. The doctor said that if it did not work the next step would be an open reduction surgery but she was too young and had to be at least 6 months old.

We tried the closed reduction surgery for the 2nd time. This time when the doctor came out he indicated that he successfully got the reduction on both sides. She had a cast from the waist down and had to wear it for 4 months – every 3/4wks we had to change the cast and check her legs with an ultrasound. The ultrasound results have all been positive so far, each time we checked both sides were in.

She got her cast off – finally! Confirmed again with a MRI and both sides still in. Right now she has to wear a brace for 3 more months – Much better now – we can take the brace off, take her in the swimming pool, give her a bath, she’s starting to roll around a little.

In September we have to go for the first check up since her cast was removed and hopefully she can stop wearing the brace – Will be just in time for her to start crawling…





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May 1, 2020 Riley’s Story

Riley’s Story

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose...

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” Romans 8:28 (NLT). I never heard my biological clock ticking away the years loudly in my ear. I had been married to a great man for 10 years, and we were having an awesome time together. I loved my career, and I was progressing nicely up the corporate ladder. I didn’t really have a strong desire to change things when they were going so great. But I also couldn’t imagine us growing old with no family. So my clock sounded more like “now is as good a time as any other, and you’re not getting any younger.” Then, I got pregnant, and everything changed.

I absolutely loved every part of having a baby. The pregnancy went smooth with no morning sickness, so I started packing on the pounds right away. The only snafu was when we found out the baby was a girl. (I just knew she was supposed to be a boy.) The C-section delivery went well, as far as C-sections go. And we had a beautiful baby girl. It was such a very exciting time!! The joy that filled my heart from holding that sweet little girl is truly indescribable.

The morning after baby Riley’s birth, her pediatrician came to the hospital for the customary initial check up. Riley was in the hospital nursery when she did the check up, so we weren’t actually present. The pediatrician came to my room to let me know she had seen Riley, and I will never forget it. In the haze of everything, it seemed so innocuous then. The first thing she asked me was if there was any history of hip problems or hip replacements in our family, because she had felt a slight “clicking” in Riley’s hips. My heart sank a little when she asked that, but she assured me it was not a big deal, and we would look into it further in the doctor’s office once we were released to go home.

At Riley’s first in office pediatrician visit, the doctor still felt the “clicking” in her hips, so she sent us directly to the Pediatric Orthopedic doctor. And that is where it all began. Over the next few weeks, Riley had several checkups with the orthopedic doctor, including X-rays and ultrasounds of her hips a couple of times. He kept waiting and checking in hopes that her hips would tighten up on their own. Since my husband and I had been married, we have been strong believers in the power of prayer. But let me tell you about praying over your child!! Talk about “praying without ceasing.”

The X-rays were showing no improvement, so the doctor finally decided we were going to have to put Riley in a Pavlik Harness. He said we would try the harness out for a couple of weeks, and if she made progress, then she would wear it for six weeks. If she did not show any progress, he said we would talk about that when the time comes because the harness has such a high success rate. I was extremely upset that she had to wear the harness, but I kept praying and believing with all my heart that it would heal her hips and she would be great!

After a couple of weeks in the harness, Riley was sent for another X-ray. The doctor reading the X-ray told me it did not look like the harness was working for Riley. He off-handily mentioned something about surgery and a body cast, which the Orthopedic doctor had not yet gone over with us. I broke down in the X-ray room for the first time through all of this. The thought of my sweet baby in a body cast was just too overwhelming.

Our Orthopedic doctor did confirm Riley would require surgery, which would mean a body cast for 12 weeks. The doctor indicated to us that he would wait until she was six months old to do the surgery. So in the meantime, we just had to wait it out. Riley was in no pain of course from this so it was not a problem. I am not usually an emotional person, but I can tell you that the weight of it all was very heavy. During those months of waiting, I have never prayed so often and with so much determination in all my life. I never blamed God for this. I may have asked “Why?” a couple of times, but either way, He used it to bring me closer to Him. I really got my strength for this from Him. I kept hope through my faith and prayers all the way up to the surgery day that He would miraculously heal her hips, and we wouldn’t have to go through with it.

The day of the surgery came, and the doctor confirmed it was still necessary. In fact, we would learn after the surgery that one of her hips was 100% out of socket and the other was 80% out of socket. At this point, what can I say; this will forever be one of the hardest days of my life. To send my sweet, precious, tiny six month old into surgery; it was difficult. Of course the whole family was there at the hospital for support, and for that I am so grateful. I am usually good at thinking through things in a straightforward way − In a something has to be done kind of way. And this day was no different. I told myself this would be tough, but it had to be done and we would get through it. The surgery took about four hours after they finally took her back, so it was a waiting game. The operating room nurse did call every hour with an update to let me know it was going as planned. Finally, after the surgery was complete the doctor came out to give us his version of how it went. He explained that the surgery involved making an incision in her upper, inner thigh to allow for more lengthening of the muscle, then another incision was made at the inner hip joint area to allow the doctor to go in and set the hip joint in the socket. Then she was placed in a full spica (body) cast. He said everything went as planned and we would be called back to recovery as soon as they had her setup there.

No amount of mental preparation can prepare a parent to see their infant like that in a hospital recovery room. The recovery room nurse was not quite ready for us when they brought us back to recovery to see Riley. She still had all the surgery tubes and equipment lying on her bed. But worse still, they had not yet administered her pain medication and she was awake screaming. Her little face was puffy from the anesthesia and fluids and crying, and she just looked so pitiful. It was so hard for us to see her like that; I just can’t tell you the emotions that were running wild. The nurse was able to help me get positioned to hold her, then she gave her some pain medication. And finally, Riley calmed down. Holding her there like that in that big cast, there was no one else in the world at that moment. I love her so deeply and couldn’t stand to see her go through it all. After she was cleared from recovery, they moved us to a room where we stayed the night.

This is when our smooth surgery ended and the drama of having a child in a spica cast began. The nurse came in to Riley’s room and gave us some bottles and extra diapers and told us whatever we do, do not let the cast get soiled!! Then, she left, leaving us on our own.

The spica cast was open between the legs to allow room for diapering, but certainly not in a traditional manner. Almost immediately, her cast became soiled and no one was able to suggest any diapering method that prevented it from happening. After the first week, her cast was so soiled in the back that her back looked like it was covered in large water blisters, which was essentially a bad diaper rash. This is when I finally had a breakdown. The pain of surgery wasn’t enough, now Riley had a horrible rash from the cast. By the way, did I mention it was June in Memphis when we were going through this, so it was already blazing hot weather? I was worried that the mildew from the soiling would be so bad that the doctor would say the cast would have to be changed, which would require her to be sedated again. We became desperate and determined at this point to get her cast dry and to figure out how to keep it that way.

My husband found this thing on the internet called a “cast cooler”. You wrap it around the cast and attach a vacuum cleaner to it, and it is supposed to pull cool air through the cast. I thought to myself, what a gimmick! So we bought it. Remember. . . we were desperate. Well, what do you know?! The thing actually worked! In fact, Riley loved it so much that we used it on her throughout her entire time in the cast. She would sit for close to an hour with the vacuum cleaner running, pulling cool air through the cast and onto her back and legs. Because of the cast cooler, we were able to get the cast dry. We then used a strong diaper cream on her rash, and with her cast now dry, it healed very quickly.

Perhaps most importantly, we discovered the best way to diaper a child in a spica cast to avoid any additional issues. The secret? Incontinence pads. In fact, after everything was said and done, our doctor said he had never seen a cast stay so clean. However ingenious it was, you haven’t lived until you’ve gone to your local store dragging an infant in a full body cast around in a red flyer wagon, which you’ve stuffed full with boxes of incontinence pads to buy. You can imagine the looks. I think I even laughed at myself the first time. So I did what all enterprising women would do in such situations . . . I sent my husband for the pads. That too got its share of looks — turns out it’s apparently just as rare to see a 33 year old man buying the economy-size package of incontinence pads. Who knew? (I give full detail instructions on how to diaper an infant in a spica cast at the end of this story for anyone who needs to know. The diapering issue was only one of our hurdles we encountered through all of this.)

Before leaving the hospital after the surgery, we were provided a car seat that fits children with spica casts. Frankly, I am glad the hospital did this, because it is not something that even crossed my mind that we would need. In Tennessee, there is apparently a grant program that provides the car seats free of charge. So a state worker brought a car seat to our hospital room and left it with us. It wasn’t anything special, to be sure. It was just a normal car seat with really low sides to allow room for the widespread legs. Everyone assured us this was the standard car seat they give to spica cast patients so I never questioned it.

When it came time to checkout, my husband took the car seat to the car and installed it, and then he brought the car around to the front lobby door of the hospital to pick Riley and me up. One of the nurses rolled us out in a wheelchair and dropped us off at the door. We went to put Riley in the car seat, and immediately we knew she did not fit at all. It was terrible! Riley was in pain from surgery and each attempt we made to fit her in the seat was hurting her even more, causing more screams — all of which added to the anxiety. But it just wasn’t working.

We had no idea what to do. We had already been discharged from the hospital, so we didn’t feel like there was anyone really responsible for us anymore — and apparently they felt the same way because everyone disappeared. The nurse that originally dropped Riley and me off came back with another patient, saw we were having trouble . . . and quickly scurried off before we could ask for help. Meanwhile, a security guard was hovering and harassing us, riding our case because we were blocking the front drive to the hospital. Not to mention that my sweet girl had doubled in weight (15lbs. to 30 lbs.) over night because of the cast. Luckily, God was watching out for us in that moment, as He always is.

About that time, a nondescript man in scrubs walked by and asked if we needed help. We explained our situation, and he immediately went to work helping us resolve the issue. Turned out that the man was some high level administrator at the hospital. The whole thing turned into (what I can now say was) a comical situation. I mean, here we were, discharged from the hospital and technically no longer a patient, but with no way to get home because the car seat is incompatible with Riley’s spica cast. Thankfully, the gentleman ended up bringing in reinforcements — another state worker and two other hospital employees — and, truthfully, not a one of them knew what to do with us.

I mean, it is the law for infants to be in car seats. But no other car seat options would fit Riley. Turned out that the problem was it wasn’t common to have a child that small in a spica cast, and that’s why the standard-issue seat from the hospital didn’t work. The seat depth was simply too long for her. But when they called their legal department to ask if the hospital could risk sending us home with Riley riding in my lap, the answer was a resounding “No!”.

That moment was so surreal. I felt like Tom Hanks in that movie “The Terminal”, where the US wouldn’t let him enter, but his home country wouldn’t let him return. Riley — and my husband and I — was stuck in limbo in this hospital lobby, already discharged, but not allowed to leave. After three hours waiting in the lobby, someone came up with the brilliant solution of getting us an ambulance transfer home. But nothing’s really that simple when dealing with hospitals, who have been sued by attorneys, and who have now paid the hospital’s attorneys big money to write these ridiculous regulations making sure that no one could ever again sue them for that reason — or any other among a carefully enumerated list detailing a parade of horribles that will occur if one dares violate the regulations. The regulation in question apparently makes it abundantly clear that an ambulance cannot pick up someone for transport from the hospital lobby or any other common area (like the front door): they must pick up patients only from a specific, numbered hospital room. Okay, so we’ll just sit in this room over here. Um, no, you must actually be readmitted to the hospital to get one of these specific, numbered rooms, just long enough to notify the ambulance company of the specific, numbered room to pick us up from. And, like getting admitted to the hospital the first time around, that’s not the fastest process in the world. But, we finally made it to a room, and shortly thereafter the EMTs came in and were quite baffled at their atypical assignment for the day. But we finally made it home.

Thanks to the internet, we found the Britax Hippo (Spica Cast) Car Seat, quickly ordered it, and it solved the transportation problem quite nicely. After all of that, which was just the first week, we were able to focus on getting through the summer in the spica cast.

Over the summer, God would begin to reveal Himself to me through this process. My opening verse here says that God uses everything for good, and now I can say I truly, deeply believe that. I know God would never wish this on Riley, but His word promised that if she had to go through it, at least some good would come of it. Through the pregnancy and Riley’s short life so far, I had really prayed so hard that God would make a way for me to be able to stop working and stay at home to raise Riley. I longed for it so badly, and I let it affect my mood and outlook about going to work every day. Because of this situation, I was able to make arrangements with my work to be able to work from home while Riley was in the cast. That alone was such a blessing because the other option was unpaid medical leave. Instead, for ten weeks I worked from home with my mother’s assistance to help care for Riley. During this time, I began to understand why my prayers of being a stay-at-home mom had been answered with a “no”. God really opened my eyes during this time and showed me how much I enjoy my job and working, and that I am blessed with such a great job that is flexible with me being a working mom. This was so refreshing for me. We got through the remainder of Riley’s casts days with no issues. We even had fun with it. An infant in a spica cast is stationary enough to be able to polish her toes — so i did, and let me tell you, that got such a reaction from everyone, even strangers in public. Daddy also loved to raise her up high by the legs, which were rigid because of the cast, and it made it seem to Riley like she was flying, and she loved it. We also joked about the things we were going to say to people because, let me tell you, we were stopped every single time we went into public. At times it seemed to be for sympathy. Others though seemed to gawk. So my husband and I used to joke about telling people that it happened in a bungy-jumping accident. Anyway, we had some fun with it.

But there are so many things that are difficult about this whole process for a parent, and I can’t stress enough: You will get through it! Trust in God, and He will give you the strength for it. There are so many other things I could tell about our experience, but these are the highlights. There are also so many other little blessings God provided, like my health insurance paying for the spica cast car seat we had to buy, friends and family that sent food to us that first week, friends and family that watched Riley some so Tim and I could get out of the house, and the fact that she ended up only having to wear the cast 10 weeks instead of the expected 12 weeks. So look for the good in the situation and you will find it.

Diapering a Child in a Spica Cast:

As I mentioned in the story above, you will need incontinence pads like Poise pads, not the Depends undergarments. Get the long version. Also, you will need two sets of diapers: one set that are about the same size your child was wearing at the time of surgery, and the second set that are the largest size.

First step is to insert the incontinence pad under the cast. Make sure it is centered and you might want to place it so there is a little more length in the back instead of the front. If it’s too long, you may tuck it in the back some up under the cast — but this is not meant to fill the gap entirely, that’s what happens in the next step.

The second step is to take the smaller diaper and position it where you tuck it up under the cast but over the incontinence pad. Be sure to smooth the diaper out as much as possible to cover a maximum amount of area. This diaper should be big enough to stay in place once you tuck it in all around. If the incontinence pad is positioned well and changed frequently, then this diaper should not need to be changed every time since the moisture is almost all caught by the incontinence pad, which fills up the space quite well.

The third step is to place the large diaper around the outside of the cast as you would normally diaper. This diaper is really just to help keep the incontinence pad and small diaper in place. You should rarely need to change this diaper.

Some other useful items in general is a kid’s size bean bag, the cast cooler mentioned above, a red wagon in place of a stroller, and a sling carrier.





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May 1, 2020 Francesca’s Story

Francesca’s Story

Francesca was born on a Summer morning. Once our baby was in our room, it all become so real. We were spending time bonding with...

Francesca was born on a Summer morning. Once our baby was in our room, it all become so real. We were spending time bonding with our new baby when her pediatrician walks into the room, asks our guests to please step out in the hallway, and our hearts sink. It’s at that moment that you know there is something wrong with your perfect baby. Nothing will erase that moment from my mind.

Francesca was diagnosed with DDH in both hips that very morning. She was to be “triple diapered” until a proper fitting Pavlic Harness could be ordered, in Preemie size. Both hips were dislocated at the time. While they didn’t cause her any discomfort they needed to be put properly in place. Francesca faithfully wore the harness from 5 days old to 3 months old. As new parents it was sad to see our daughter immobile, but yet it became normal to us. We were told we could then wean her out, her hips were “looking good”. After many x-rays and ultrasounds, we were excited to have our baby back. We weaned her and were so excited to finally see some progression in her gross motor skills. She had learned to roll over and sit up with assistance! We were so proud of her.

At 6 months old, Francesca had a follow up appointment with the orthopedic doctor, and after her round of x-rays, we waited, and waited for the doctor to come to our room. Something was not right. The doctor walked in and explained that her hips “looked bad” again, this time the left being worse than the right. However, this required more treatment. We were scheduled for a surgery, while they were hoping for a closed reduction, we were prepared for the very real fact that an open reduction may be needed. Nothing could have shocked us more. Our perfect baby was going to need surgery.

At 9 months old Francesca had a closed reduction done, and was placed in a Spica cast. She did fine, considering that she was suffering from RSV. She was in the cast for 10 weeks total. While in the cast she learned to “scoot” on her back to where she wanted to go. She could roll from her tummy to her back and seemed to be comfortable with her new situation. Not looking forward to her being put under again, we were excited for the cast to be removed. At just shy of 12 months her Spica was removed, and she was put into a Pavlic Harness again. According to the doctor, her hips were now “textbook perfect” and we should be done with treatments. As we slowly weaned her out of her brace, we were again overjoyed at seeing our daughter finally able to sit. The first time my girl was able to sit was at 13 months old. She started to army crawl at 15 months, and was finally walking at 16 months old.

We were excited for her 4 month follow up with her orthopedic doctor. After xrays, they suggested an MRI. Of course we were worried. We went ahead and got it done. We waited for the doctors response. We were floored to hear that the closed reduction and spica, followed by the Pavlic harness only fixed her right hip. Her left was still dislocated, lacking a true socket, and would need further treatment.

During this time we moved and were told to find a new orthopedic doctor in our new city and state. We did right away. At 18 months our stomachs dropped once again. After x-rays and a new doctor visit, they suggested surgery. However, since it is a new doctor he wants to wait and see her progression over the next 6 months. We have her follow up appointment at 24 months, and sure enough, her hip is not better, but worse. The right is fine, the left is almost without a socket. We are scheduled for a pelvic osteotomy. As parents we were devastated. She could walk, run, jump, she was fully potty trained. We had to face choosing when to do the surgery. In the summer? In the winter? When is a good time to choose for your “big” 2 year old to not walk?

At 25 months we are preparing for the surgery when we are hit with yet another bomb shell, at her pre op appointment with her pediatrician, they hear a heart murmur that has never been there before. After a cardiologist visit we are told that Francesca has IHSS, ASD, and HCM. We decide to wait on her heart and go ahead with her hips. Francesca is excited as we pull into the hospital for our “sleep over”. She had the surgery, all went well with the exception of the pelvis breaking completely and needing 2 pins to fix it. She was put into her second Spica cast. Poor thing at 2 years old, fully potty trained… now unable to move on her own. We spent 2 nights and 3 days at the hospital, dealing with her pain and learning (again) to care for a child in a Spica cast. Another specialized car seat, more diapers and depends, and the pain.

It isn’t recommended, however Francesca quickly learned to roll over, scoot, crawl and even walk and jump in her Spica. We had many x-rays to watch her healing. She was doing well, better than expected. After 2 months it was removed. She was scared, but excited. For this removal they did not sedate her, rather cut it off while she was awake. She started walking that very day!

She had a follow up and again we are being told that it is “text book perfect”. We were able to schedule her to have the pins removed. About a month later she had her 4th hip surgery. Again the fears rush in, being a parent. She pulled through just fine and we went home the same day! She had some pain, but was very happy to be able to stay at home this time. The orthopedic doctor said that everything looks so good that we don’t have to return for 6 months! We haven’t gone this long without seeing the orthopedic team since she was born!

We will see from here, however we are hopeful that after all of the “devices” used to fix our daughter, that she is finally able to lead a normal life. Francesca is now 3 years old, she has been in a Pavlic Harness for 6 months, and a Spica cast for another 5 months. 11 months total, nearly ONE THIRD of her life has been spent restricted, immobile. But as first time parents, it all seemed very normal to us! Francesca has a little sister, born with perfect hips. We didn’t realize how much care it took with Francesca, because you just do it… without thinking about how “hard” it is to have a baby that isn’t “normal”. Francesca and her sister took their “first steps” together, after her second Spica cast was removed. It was heart wrenching, beautiful, and I wouldn’t change that moment.

Despite our worries Francesca walks with only a mild limp. She is physically able to do everything a “normal” 3 year old would be able to, with one exception. She cannot walk up and down stairs. But that will come. Since then she has had her first dance class and did wonderful! Thinking back we were so worried that she would never walk, or walk normally, let alone be able to jump, dance, run and play with other kids her age. It was a long road, and I hope that this is the end of her hip surgeries and our journey with DDH, but I wouldn’t change a thing. She is a perfect girl and looking at her you would never know that she had any issues. After this 6 month follow up we will be able to just follow up with the orthopedic doctor every year until she is done growing. We are hoping for the best, as always prepared for the worst.

Now that Francesca’s hip seems to be fixed, we can focus on her heart and her upcoming open heart surgeries.

Update – 2011

Franceca was in for a check up and is nearly 100% “textbook” after her osteotomy, which is fantastic!





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May 1, 2020 Grace’s Story

Grace’s Story

When our baby Grace was born our doctor said that she might have hip dysplasia, it scared us – all new parents want there kids...

When our baby Grace was born our doctor said that she might have hip dysplasia, it scared us – all new parents want there kids to be healthy and safe…we had never heard of hip dysplasia before.

It was the end of Winter when Grace went in for her first x-ray. The doctor told my husband and I that when we’re born, the ball part of the hip joint is cartilage, and usually by 4 months, the ball has become bone. More and more, babies are developing the ball into bone later, even though all of the medical textbooks say by 4 months, it should be bone.

Our doctor has seen kids as old as 14 months that still have not developed the ball from cartilage to bone. Due to the fact that the ball is still cartilage, we were unable to get a clear picture of the socket and how it is positioned on an x-ray, since cartilage doesn’t show up on x-rays. For that reason, we had to go back in 2 months to have another x-ray, hoping that the ball will be bone and show on the x-ray.

Grace had her second x-ray in the Spring of the same year. There was concern that the socket wasn’t deep enough yet. The way the doctor explained it to my husband and I was that Grace is a B+ and she needs to get to an A. Our doctor decided to use a “Hip Abduction Brace.” We were fitted for this a few weeks after and then returned in 2 months for more x-rays and to see if Grace had to keep wearing it.

Our doctor said she might have to wear it for 3-6 months depending on if it is helping… Grace had to wear it 10-12 hours a day. However our doctor didn’t recommend using it at night.

Over the next 1.5 years, Grace has had 3 more x-rays and they all came back showing that her hips had healed!! We were very lucky that she did not need surgery. The doctors we saw were amazing. Grace crawled at 8 months and was walking by 12 months!! She is turing 3 in 1 month and is a very happy active little girl!!





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May 1, 2020 Isabelle’s Story

Isabelle’s Story

A Long, Hard Road to a Positive Outcome We hope our story will help other parents who have children with dislocated hips, especially those that...

A Long, Hard Road to a Positive Outcome

We hope our story will help other parents who have children with dislocated hips, especially those that are found after walking age and are difficult to treat. After our daughter started walking, we noticed that she was limping and her left leg looked shorter. We took her to the pediatrician and a dislocated left hip was diagnosed at the age of 13 months.

With a dislocated hip, the ball at the top of the thigh bone is up higher, which makes the left leg appear shorter. She had to bend her right knee to stand.

Our lives immediately changed and haven’t been the same since then. We saw an orthopedic surgeon who sent us to a pediatric orthopedic surgeon who had lots of experience with dislocated hips in children. My husband is in the military and we have another child so that made problems seem even worse. However, we both have a positive attitude towards life and that probably helped us as much as anything.

Of course we wondered how our darling daughter could have a dislocated hip that was not diagnosed earlier. We learned that this happens in almost 10% of dislocated hips even though our daughter had good medical care and regular examinations as an infant. There are definitely cases that come out of the socket after the age of six months. Even countries that have had comprehensive screening for decades are still reporting late cases of dislocation. It didn’t help us to blame anyone and it wouldn’t help our daughter recover so we turned our attention to getting her well as soon as possible. That turned out to be a lot harder than we ever imagined.

Brace Wear

We wanted to avoid surgery. A new method was tried called the Hoffman-Daimler method. It’s similar to a Pavlik Harness and successful treatment had been found in Greece. She tolerated it well and didn’t seem to mind but it was hard to get her clothes off and on. Also, it kept her from walking and that was pretty tough on a 13 month old who couldn’t understand what was happening. After six weeks the doctor said that this wasn’t working and she would need the standard treatment of closed reduction and cast treatment. The thought of four months in a cast was frightening but we had no other choice since bracing had not worked.

Note from the IHDI:
When a brace does not correct a dislocated hip, the next treatment options are a closed reduction or surgery involving an open reduction, possibly together with osteotomy. In a closed reduction, the child is put to sleep, and the doctor manipulates the hip joint to get the ball at the top of the thigh bone inside the hip socket. In an open reduction, the doctor surgically opens the hip socket. In an osteotomy, the doctor cuts bone to realign the hip socket and/or the thigh bone. In some cases the doctor tries for a closed reduction, which is less invasive, and if that doesn’t work, will then do surgery. Parents often prefer this approach as well because if the closed reduction works, then surgery is not needed.

Attempted Closed Reduction

At the age of 15 months, our little daughter had general anesthesia for a closed reduction. We expected everything to be fine. It was pretty depressing when the doctor told us that the hip wouldn’t go into the socket because the ligaments were too tight and something was in the socket that kept the hip out.

The arthrogram shows that something is preventing the ball from going into the socket.