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!

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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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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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 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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April 30, 2020 Emma

Emma

Hello!I am 29 and was diagnosed with congenital dislocation of the hip at 6 months, but was advised I needed to wait until I was...

Hello!
I am 29 and was diagnosed with congenital dislocation of the hip at 6 months, but was advised I needed to wait until I was 15 months before they could operate. I had a salters osteotomy on my left hip followed by a hip spicer cast. They needed to reshape the socket to fit the femur.

My parents were told that I would need to have further surgery as a teenager due to my leg indifference and after yearly reviews, at 12 years old I headed back to hospital for an operation on my knee to drill the growth plates in my longer leg.

I am still over a centimeter out and walk with a limp, but they can not operate unless there is a greater indifference.
I have always had restricted movement in my left hip and could never cross my legs and there is only about 50-60% movement, which is getting less year by year. Tying my laces is hard and bringing my knee to my chest is impossible.

I love sports and was very lucky to lead an active childhood. I played netball, rode horses, danced and kept up with most of my friends. I did have to adapt – ballet was always tough doing the movements so they helped me change them. I couldn’t sit on the floor at school so they let me sit on a chair. Running has always been an issue and at 20 years I was advised by the orthopaedic consultant to cut my sport back and not do any high impact sports.

It was hard to accept, but I have slowed down at sports and turned to hiking to try and keep active and go to the gym. As the years have gone on I have noticed I am getting more pain in my joint. It is frustrating wanting to keep active and to keep weight off, without doing further damage. I have to be careful not to overexert at the gym or walking, however I have been so lucky to be able to do what I have done and I will always be grateful for the amazing surgeons that helped me.

At 29 I don’t know what the future holds, I am worried about it deteriorating. Friends have advised doing yoga to keep it simple, but I can’t do half the movements so I just get flustered and embarrassed!! Cycling is okay gently, but I have noticed spin classes aren’t good. Swimming it is then! 🙂

It would be great to know if anyone else has similar experiences or has any advice?!

Thank you X





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April 30, 2020 Michelle

Michelle

I was born with bilateral hip dysplasia. My left hip is worse then my right. It effected my whole life. I couldn’t play with the...

I was born with bilateral hip dysplasia. My left hip is worse then my right. It effected my whole life. I couldn’t play with the kids on the playground. I was full of shame because of my limp. I felt I attracted a lot of negative energy because of surgeries I had as a kid. It was a lonely cause no one I knew experienced what I was going through unless I was in the hospital.

Just 3 weeks ago I finally got a THR. I am so happy I can’t wait to feel like a person I always wanted to be but couldn’t cause it was too painful to face what was my reality or my limitation. People can say some heartless things. Just cause you can’t see the pain doesn’t mean it’s not there all over your lower half of your body. You’re body compensates for your bad hip and causes you tremendous amounts of pain. It’s hard asking for help and losing your independence.

There is so much I could say I don’t know where to go from here. I guess if any of you do get a hip replacement too please be forgiving of yourself and cry if you need to. It’s not like a typical hip replacement we have different anatomy and extenuating circumstances. So our healing takes longer. Be kind to yourself cause it’s a lonely journey. No one knows it unless they walk it and not too many have it all their lives. I have limped so long I am struggling with walking even. Just be kind and patient with yourself.





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April 30, 2020 Rebekah

Rebekah

In 1990 I was born with hip dysplasia in my left hip, but it went undiagnosed. It wasn’t until I started walking with a profound...

In 1990 I was born with hip dysplasia in my left hip, but it went undiagnosed. It wasn’t until I started walking with a profound limp that it was obvious to my parents something was not right. I was diagnosed with hip dysplasia, something unheard of in our small central IL town. It was decided it was too advanced and required surgery. The doctor who operated had never seen anything like it before and he was so excited he filmed my walking and sent it to some university or other.

So at 1 1/2 years old I had a corrective surgery to repair the hip, then another surgery to lengthen my femur. My parents will tell you how terrifying it was watching their precious blonde haired blue eyed girl hobble down to surgery holding a nurses hand. The good news is I made a full recovery, the bad news is my bones were so weak from being casted as soon as I was healed I fell and broke my leg.

My childhood was full of X-rays and doctor visits to make sure I was developing normally. Luckily the experience prepared my parents for when my siblings were born. You can imagine they religiously checked their hips for any signs of hip issues. My sister also had dysplasia in the left hip but it was caught early enough it was corrected with a brace. My brother had no dysplasia but recently fell and slipped his growth plate in his hip requiring surgery on both hips, so he joined his sisters in the hip problem club.

The doctors told me I would walk normally but would never be a runner. I defied them by making sure I was the fastest runner out of all my relatives. And today I am married to a distance runner, I have ran 3 5ks, worked as a chef (a very physically demanding job) and now I have a little blonde blue eyed boy of my own! It makes me so happy to know that I am not alone. In my early teens years I was hungry for information about what happened to me but was disappointed to find only articles about canines. So thank you for this organization, if my parents had this information I know they could have benefited greatly, and would have had greater peace of mind. Here’s to the future!





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April 30, 2020 Leah

Leah

I am 38 years old and had been having hip pain in my right hip for the last 6 years. I approached my doctor at...

I am 38 years old and had been having hip pain in my right hip for the last 6 years. I approached my doctor at the time about this and was sent to a chiropractor. They did x-rays and found nothing of concern with my hip but did find issues with my neck and lower back. He said he was not able to help me and if another chiropractor tells me he can by cracking me to run. So, I just lived with the pain. Fast forward 4 years and a lot of weight gain due to lack of exercise because of the pain and continue injuring myself. I tried exercise again and was down about 30 pounds until the problems started back up again and with advengance. August 22, 2017 I went into work knowing I should have stayed home but could not due to missing work due to the pain previously. I had used up my vacation time and my FMLA. I had to hold on to things as I moved around trying to do my job, which is shop work. By the end of the night (I worked third) I could barely make it to my car. I sat in my car and cried. I went home and called my doctor right away. She took me off work until further notice. This is when my search started by going to different doctors. The first thing that was found was a herniated disk in my neck. I was then introduced to a new doctor. He did the surgery to fix my neck the best he could. I’m still left with constant headaches and limited motion. He started looking into my lower back and ordering different test. April of 2018 I went to Grand Rapids, Michigan to have a spec scan. To his surprise my back did not show up take but my hip did. He then sent me to a orthopedic surgeon. This surgeon did x-rays and sent me to have a hip mri arthrogram done. I went back for the results a few weeks later. I was told that I had tares in the cartilage around my hip joint but my socket was very shallow and there was no point in repairing them because it would just happen again. He referred me to another doctor to see if a PAO would be possible. In November of 2018 I went to see this new doctor and found out that I have hip dysplasia in both hip, the right being the worst. He ordered another hip arthrogram mri because the previous one was not the best quality. He called me with the results. My hip had too much osteoarthritis for a PAO to be effective and a total hip replacement would be my best option. So, I started looking for a surgeon. Meanwhile, I am now walking with a cane for short distances and a walker for anything with a larger distance. I was told I need to lose weight in order to qualify for a total hip replacement so I went to a dietitian and lost 37 pounds, which is really hard to do when you cannot exercise. Regardless of the weight loss the pain stayed the same. I have now seen two surgeons about a hip replacement and one told me I was too young and the other told me that there was not enough osteoarthritis to justify doing a THR. He told me I was in like a limbo where my hip is too bad for a PAO and not bad enough for a THR. I cried all the way home, feeling completely hopeless in my current situation. I am still beyond myself at this point and do not know where to turn. I want my life back. I’m not sure what to do at this point besides to continue this fight and refuse to give up. I will continue my new healthier eating habits to continue to lose weight and hopefully find a surgeon who will not let me live in this horrible limbo where 90% of my life is lived in a recliner. I’m too young to feel this old.

My hopes in writing my story is that someone, somewhere will read this and be able to give me some guidance. Whether it is a lead to a good surgeon or just some advise on how to ease the pain while I am stuck in purgatory.

I want to thank everyone who has written their stories because it has helped me not to feel so alone in this fight. I hope mine will help others too who are new to this debilitating condition not feel so alone.





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April 30, 2020 Kimberly

Kimberly

It’s been quite the journey mentally, physically and emotionally the past 10 years. I am a 31 year old female and was a competitive gymnast...

It’s been quite the journey mentally, physically and emotionally the past 10 years. I am a 31 year old female and was a competitive gymnast and college cheerleader. I have battled hip pain since 2010 thinking I kept having a groin strain from tumbling. In 2017 it started to get more frequent, more intense and the pain started to travel. My hip would give out for no rhyme or reason just simply walking in the grocery store. From deep aching pain on the sides of my hips, to subtle “jolts” in the groin from turning my leg the wrong direction. Once long walks started to be out of the question, I knew I had to do something about it. Believe it or not, running on my hips was much easier than walking but I hated to run (that’s dysplasia for ya! )

I am a chiropractor and my job is to help people manage their pain conservatively, ultimately finding the root cause of the pain. Living with this hip pain began to get incredibly tiring so I knew after trying every conservative therapy out there, something wasn’t right. No sleep at night turned into long naps during the day and weight gain from lack of mobility. Laying flat on the heating pad was the only relief I would get.

I never really vocalized how bad it was to anyone until I couldn’t take it anymore. I saw 5 local orthopedic surgeons, all of which said “your hips just don’t look right” after multiple series of x-rays and MRIs.
As a physician myself, it’s not really what you want to hear. The last doc recommended I head into NYC to see a hip preservation specialist. I thought all along I just had a torn labrum and needed to be repaired via an arthroscopy.

Once in NYC, they did more and more imaging to get a proper diagnosis. When they said “you have bilateral hip dysplasia”, all I could think about was dogs and immediate sadness. They explained how my socket was shallow and not covering my femoral head and the only way to fix it was to reposition the pelvis. After doing more research when I got home about the PAO surgery, I was terrified. I had my right hip done in October 2018 and I’m starting to really get my life back! I still have some bad days and deep aches out of no where but my leg is getting so much stronger! My right hip no longer gives out and I don’t have to walk like a waddling duck anymore! I am getting a left hip arthroscopy in 2 weeks to try to stay conservative but knowing there is a chance it fails without repositioning the socket again. Just the thought of losing my independence and being on crutches again is terrifying.

When you’re faced with a diagnosis like this, no one really understands unless you live it. If you’re reading this because you struggle badly like I used to, there is help out there. (Both physical and emotional help) I encourage you to join our Facebook groups and reach out to family and friends for support!





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April 30, 2020 Patricia

Patricia

Born in 1961, my Bilateral Hip Dysplasia was not diagnosed until age 18 months. I was child #5 for my mother who had to insist...

Born in 1961, my Bilateral Hip Dysplasia was not diagnosed until age 18 months. I was child #5 for my mother who had to insist on further tests as I wasn’t able to stand or walk. A basic leg manipulation showed no issues. Xrays showed not only dislocated hips but that they were grossly deformed and undersized, pointing in the wrong direction! I was put in traction for some time and then into the body cast, which went from my armpits to ankles and had a fixed rod holding my legs apart. This cast was removed every two months, my legs rotated into another position, X-rays taken and another cast was put on…..for close to 5 years! After that, it was a bar braced between two shoes with the toes cut out, to slowly bring my legs back together. That took six months to accomplish. I still have the ‘rig’ in my office at home, looking at it reminds me to be a good girl and to not take walking for granted, which I never do.


I was not permitted to play with the rest of the kids, no running, jumping, bike riding or roughhousing with my brothers and sisters, but could swim and walk. By the age of 15, I required a PAO on the right acetabulum and the next year the left side had one as well. Both were successful. My right side was always more painful, shorter leg length and had a limited range of motion.
Move ahead to age 29….I moved to the Yukon, Canada. I was working with special needs children at our school and walking was becoming almost impossible due to right side groin pain, limited range of motion and when bending over the hip would lock into place. I simply couldn’t move by myself, and when I did it clunked and popped….I LOVED that the kids thought I was ‘special needs’ and helped me get up and around, taking turns holding me and my cane.
No doctor would touch my hips because of my young age, but I’d heard about an Orthopaedic Surgeon at another province. I found his number and called him directly from my home in the north. He asked me to send him my recent x-rays (those were the days) and called me when he received them. After a long conversation and my history, he agreed to replace my right hip first, three days after school broke for the summer. It was a difficult surgery with adjustments to the prosthetics and my pelvis, but I was back in school in the fall, feeling wonderful and able to walk with just a cane again. Apparently, I had developed Traumatic Heterotopic Ossification (THO) all over the place and needed the removal of bone frequently. He replaced the left hip two summers later along with more excess bone (THO). The femur cracked trying to slide the shaft down inside so a hybrid was used that required glue. He gave me a really good piece of advice. “Wait until you can’t walk anymore at all before you have your liners replaced” Before the time came he was hit by a snowboarder on the ski slopes and died in the arms of his wife of 53 years….! Not long before that he had emailed me from Istanbul to ask how I was making out. Seriously, they don’t make doctors like that anymore. RIP Dr. Charles Sorbie.
On to another surgeon on the west coast who was to do a simple liner replacement and more THO bone removal, followed by radiation to stop it reforming. He opened me up but the prosthetic was so old he didn’t have a liner that fit….so he removed everything and started over. He also moved the acetabulum back changing the alignment. It dislocated 10 weeks post-op while I was getting up from the sofa. Two air ambulance rides, three hospitals and six re-insertions that wouldn’t stay seated and I wake up days later in Vancouver outside the OR, ready to have my incision reopened and the hip put back in AGAIN! It wouldn’t stay ‘in’ so that surgeon removed everything AGAIN and, after some adjustments I am sent home. He said it is never going to be ‘right’ and to be careful twisting, turning etc. No raking, vacuuming, shoveling…. it is only a matter of time before it pops out again.
It goes on and on…but then I start ranting and this isn’t the forum for that. My best advice is what Dr. Sorbie said, plus be absolutely sure of who does what to what part of you. The relationship you have with your surgeon is like a dance partner…if they keep stepping on your toes and pushing you into something that doesn’t feel right, switch partners…get a second opinion and do your research first. Ask lots of questions and make sure you know exactly what is being done and why. AND BE PROACTIVE with your health, not reactive…oh, and one last thing, you are not alone out there.





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April 30, 2020 Lee

Lee

I was diagnosed with hip dysplasia at the age of 31, I was a semi pro footballer for many years and thought the pain i...

I was diagnosed with hip dysplasia at the age of 31, I was a semi pro footballer for many years and thought the pain i was getting was just wear and tear as i was getting a bit older. after numerous appointments with physios telling me i wasn’t stretching enough matches, i new something was more serious.

Finally i get submitted for an MRI scan and get an appointment with a specialist, it was then i got the news that i had severe hip dysplasia in both hips. shock wasn’t the word, i left the hospital in tears that day knowing i wouldn’t be able to be as active as i always was.

10 years on and i haven’t seen a doctor since, I am in pain on a daily basis but i just have to manage it as best i can. i still keep myself active doing activities that are low impact such as swimming, cycling, body weight exercises. I know one day i will eventually need my two hips replaced but i will remain positive and try and go as long as i can before opting for surgery. I just thought i would share my story because i think keeping active has definitely helped my mental health as well as my hip dysplasia. I try and keep a very positive attitude at all times but i am  finding its getting harder year by year.Most people look at me and think i am very fit and healthy as they cant see whats beneath, I don,t usually tell people as most wouldn’t understand because i look well on the outside.





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April 30, 2020 Lynn

Lynn

The night before my 6 month check-up my dad was playing with me and move my legs a bit. My left leg fell in a...

The night before my 6 month check-up my dad was playing with me and move my legs a bit. My left leg fell in a way the should not have been possible, but I just giggled. The next day it was confirmed by the family Dr. that I had DDH of my left hip. From there I spent time in a harness, which did not fix the dysplasia. I had a series of body casts, again these did not set my hip right. Eventually, I went to the hospital for surgery to have metal pins inserted to hold my hip in place. After being declared fixed, at 2 1/2 years old, I would need to take frequent breaks while walking or playing. I would not be able to walk 1.5 blocks to my grandparents house without sitting at least once. My mom said I never complained about pain, only that my hip was “tired”. This led to another surgery to have the metal rods removed. At the end of this surgery, my left hip was about 1.5 cm longer than my right. As I grew this 1.5 cm distance stayed the same, so the doctors grew less concerned.

Starting around the age of 15, I started to feel severe pain in my right hip. We went back to the doctor that had tracked all my follow-up care and were told it was growing pains and it should get better. The pain continued through collage. At times it was fine and other days it would be so severe I couldn’t walk. As I finished collage and was applying to graduate school, pain became more frequent. Over the next several years, I lived in 3 different cities and went to several orthopedic specialist to try and get a solution to the pain in my right hip. Each one read my complaint of right hip pain, took X-Rays and come back into the room with comments on my left hip’s location. I was told that they couldn’t figure out my right hip problem because they couldn’t compare it to my left hip. I was prescribed lots of physical therapy. Each time physical therapy would made the pain worse.

Finally, I was reffed to an orthopedic surgeon who took the time to get and look over my records from when I was a baby and everything after that. Then he did a round of MRIs. His conclusion was that my left hip not being completely in the right place my whole life and the fact that this made my left leg longer had done damage to my right hip. While he couldn’t see anything definitive, he wanted to do surgery on my right hip to try and “clean-up” some things in it. This was about 1 month before I was going to Poland for 5 weeks and 6 months before my wedding. Since there was no guarantee the surgery could be done in time for me to walk down the aisle, I elected to hold off.

At this point, my sister, who is an occupational therapist, suggested neuromuscular therapy. After 10 years of so much pain I would not be able to walk or would cry myself to sleep many days, I decided to give it a try. It only took a couple of sessions before I felt a difference. Not only did the pain start to get better, but my range or motion improved as well. After about 2 months of weekly sessions, I was able to start tapering sessions and eventually went to monthly sessions for maintenance and have now not gone in 4 years. As she worked, I could feel the tightness of the muscles around my hip and began to realize that 25 years of poor hip structure tightened these muscles to allow me to walk and do basic movements. I eventually learned to stretch and massage in specific ways and can mostly keep the pain away. I still have arthritis in both hips and can feel my left hip pop and move in and out of place often. That said, I now know the early signs and when to rest, stretch, etc. In short, I have much more control over the problem.

Almost two years ago, my kids started taekwondo. Although I’ve never been athletic, I saw the things that would do and wanted to learn. So about a year ago my husband and I started too. When I started, I was worried about my hip and if it could take it. The last thing I wanted was to go back to nearly constant pain. Actually, the opposite happened. The combination of stretching for flexibility (particularly in the hips) and the kicks and other movements we learn that build strength, have led to less bad days. In addition I can now almost do the splits and kick above my head. I still avoid excessive jump kicking and anything that makes my hip pop or move in a way that does not feel right, but am able to do most of the moves and have a lot of fun with it.

I’m sure this is not a solution for everyone, but am glad that I went with some non-traditional methods. I often joke that several very intelligent doctors could not fix my problem, but a woman with an art degree (who happened to also be training as a neuromuscular therapist too) did. Someday, I’ll need hip replacements, but I’m going to hold off as long as I can.





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April 30, 2020 Kelli

Kelli

Hi there fellow Hippies! It has been a blessing to find this site and community dedicated to the education, support and fellowship for those of...

Hi there fellow Hippies! It has been a blessing to find this site and community dedicated to the education, support and fellowship for those of us, young and adults, affected by hip dysplasia. Whether as the warriors or the loved ones, we are all impacted by this diagnosis in very heavy ways.

For my (very lengthy) story, it begins as the second born female child of very young, economically challenged parents during the Vietnam War era near Dayton, Ohio. The family was a happy lot who enjoyed family, nature, animals and spending time together, watching the baby “Beaner” develop into a toddler (Beaner would be me 🙂 ). My nickname was Beaner as I was over a 9 lb baby to a very tall, thin (bean pole) mother. I was round and plump, full of spit and vinegar, and as my mother would go on to say, had I been born first, there would not have been a second child 😉
Needless to say, the Toddler Years started off with a bang! Always wanting to be on the go, chasing after my best friend/big sister. Unfortunately, at the 12 month walking milestone, my grandma told my mom and dad that my walk was not right. She was a mother to 8 and grandmother to too many to count so mom and dad trusted her assessment and took me to see the doctor. Alas, I was diagnosed with bilateral hip dysplasia and underwent closed reduction, internal fixation and placed in a Spica Cast for something like 12 months…. I can’t recall all the details 😉 I am told, however, that I was a trouble maker! Every appointment would bring about a scolding to my parents as there would be crumbs of cookies or sandwiches or other crazy items, such as toys, which I would hide down my cast for safe keeping for a late night snack or to play with after bedtime.

My parents did whatever they could to suffice me some freedom and continue to keep me active. Back then there weren’t car seats or adaptable strollers for children in Spica casts nor could my parents have afforded such luxuries. So my ingenious father improvised, overcame and adapted! He modified an army backpack to fit me and my cast so I could accompany them on hikes and walks in the parks. He adapted a Big Wheel, or something to that effect, so that I could lie on my stomach and scoot around with my arms to chase after my sister and the neighborhood kids, and get some exercise too! Finally, after a year, the cast came off and from what I understand, I was back to terrorizing the town in no time! Hips were fine and I was released to carry on without restrictions or concerns. Yet, in the back of my consciousness, something never quit felt right in my legs.

I believe it was the 4th grade when the school was running scoliosis checks. I was always the tallest or second to tallest in the classes so I was nearly last to complete the assessment. The testers have you stand in front of them, bend over to touch your toes, and the assess your spinal curvature and your pelvic bone levels. I don’t recall exactly how I was ‘notified’, however, I was told that I had scoliosis and needed to see a specialist right away… I can remember crying and standing outside of sisters’ classroom door waiting for the teacher to pull her from class so that she could console me and call mom and dad. Back into bondage (bracing) I went.
At this point, we were going into another new school in my 5th grade year. This would make the 4th new school for me. It was a private school with uniforms and ‘wealthier’ people that we did not know. I would be going in with braces on my teeth and a brace on my back/pelvis ~ Nothing to See Here People 😉
I made the best of my middle school years. I made the cheerleading squad, played (attempted to play) softball, basketball, and volleyball. Running wasn’t ever my ‘thing’ and I wasn’t the most coordinated but I really had a good time and lots of friends!

Fast forward through high school, that was a disaster of my own making…. to the College Years. Early 20s, feeling amazing, studying exercise physiotherapy and nutrition, and meeting my first love – as he performed a jujitsu move that landed me flat on the mat staring up at his handsome face 🙂 Jujitsu would end up being the Dragon that woke my DDH. Following an advanced class of sparring, throwing in some round-house kicks, i was unable to ascend the steps to make it our parking garage to go home. My now husband basically carried me to the car in fear, with me in tears.
My amazing local Orthopedist, called a family meeting. He was a friend of the family and my aunt was faculty there so we were in within a day or two. As he read the X-rays, drawing the areas of where my acetabulum should be, the loss of femoral head shape, and outlining the areas of early osteoarthritis in a 23 year old’s hips, I could see the gravity of the news on my parent’s faces. I could feel the anxiety and guilt in the air like thick smoke. The intensity of the news that the doctor wanted to refer me to Ann Arbor, Michigan for a “new” technique called a Ganz periacetabular osteotomy, with one of the only U.S. surgeons (at the time) fell on ears ringing with head-chatter. My life had just been altered in completely different path…. His words that the alternative would be a hip replacement at some point, but I was too young, and they wouldn’t last my lifetime… and exercise physiology would not be the best career pursuit, was too much. The surgery was intensive, the recovery more so and he wasn’t certain I was a candidate yet I needed to go to Ann Arbor, MI. (My husband was excited as he was a University of Michigan football fan… in a SEA of The Ohio State BUCKEYES loyal fans 🙂 )

Circa 1994 in gorgeous Ann Arbor, MI. Best deli sandwiches in that town EVER! The doctor walked in and said, yep, she’s in pain! (umm yeah…) and that I was a perfect candidate for a hip sparing rPAO. He explained the surgery (6-8 hours long!), the need to self donate 8 units of blood (O-Neg) and a week in a Detroit hospital followed by 6 weeks non-weight bearing then progression to full weight bearing….. WOW! I was able to make 7 units of self directed O neg blood donation… surviving on a multitude of recipes for disgusting liver to keep my iron load up…. Lucky for me, my daddy is O Neg and was able to direct the last pint in my name. I needed it all!

The worst part was third shift in a downtown Detroit hospital (which is no longer in existence) all alone in your 20’s and unable to do anything for yourself. I called crying for someone to be there to be my advocate… I couldn’t take another night lying in urine or without water or medications… or anyone to talk to, so my daddy came back up to stay with me! He even got them to let me out in a wheelchair for some fresh air in the daytime…. it was so special to spend that time with him!
Recovery was no joke! I shared a bedroom with my 5 year old niece at my sisters as they were in a flat apartment, and my then-husband was in Firefighter training. I don’t know how she slept with the CPM machine droning away all night long and I am sure I was insufferable as a patient, being dependent on everyone for everything. My big sister was amazing as always! Single mom taking care of her young daughter and little sister while working a full time job in the financial industry! That’s a warrior for ya’!

I went back to college. Only this time, I was going to be an RN. Based on the care I received after my PAO, I knew I wanted to be there for people who were scared and alone like I was at that time. No one should ever be in a position of fear, pain and isolation without an advocate, so I was determined to be that advocate! I was divorced, remarried, had a natural birth 8 lb 2 oz, 21″ son (now a senior in H.S. with an Air Force ROTC scholarship for College 🙂 ), divorced a second time, raising my son as single mom.

Fast forward to 2012, PAO had been AMAZING!! No pain, no real issues… Some popping, some creaks and clicks but I was UNLIMITED and unstoppable! Then, pain started setting in… limitations in sitting, walking, positioning. Went to local orthopedist specializing in hips and anterior hip replacements, knowing that was my only next option. I underwent an Anterior rTHA 2013. Amazing the difference… 24 hrs in the hospital, full weight bearing with a walker and no real restrictions. I did end up with a herniated L4-5 as I recuperated but otherwise – Trucking On! I still needed to lose the extra 40 pounds I had started to put on since the pain started… So I went on to take yoga teacher training in 2018 and continue to develop that practice and learn yoga anatomy and trauma yoga.

There is some pain in the LT groin now and on the femoral head so I had an appointment an orthopedist in Columbus, Ohio on October 3, 2019. The RT hip looks great, the Lt is only mildly dysplastic and nothing needs done at this time. I did get an SI belt… WOW, that thing is impressive and relieves the nerve pain in my left leg down to my toes! I am somewhat hyperflexible and need to work on strengthening and not flexibility – flexibility can be a bad thing in hip dysplasia, as hypermobile joints can cause joint pain and result in higher rates of subluxation, dislocations, sprains and secondary osteoarthritis. Physical Therapy, here I come 🙂

My story is one of genetics. Although I am the first diagnosed, I do not believe I am the first in the family. My father has hip pain. My sister has hip pain which was diagnosed without any xrays as over-activity/use. My paternal cousin’s second born SON has DDH and wore the Pavlik harness. My niece’s first born princess (in the images here – Willa Roselyn) has DDH and wore the Pavlik harness.

This makes me focus on if there a program that we can start in infancy to develop the musculature and surrounding joints/foundation to prevent adult onset early osteoarthritis and joint destruction utilizing a holistic approach? Researching different countries’ therapy techniques and approaches to DDH for prevention of adult onset sequelae leads me to believe that there is hope. That one day maybe we could develop a holistic program for Hippies that includes nutrition, yoga, massage, exercise, meditation, essential oil therapy/plant medicine and guided imagery.

As M&M says in one of his songs, ‘its like a tornado meets a volcano’ ~ my life has been a whirlwind. Yet, it’s all in how you look at it. I choose gratitude! I am stronger for my weaknesses and wiser for my mistakes. My current partner and I have a farm we are starting with a lot of acreage that I plan to walk, plant/harvest and work until I expire. I will continue to study this diagnosis, the approaches to management and prevention of sequelae and adult onset DDH with it’s comorbidities. I will continue to advocate for this cause, for myself, and my family, and for all of us HIPPIES out there looking for answers.
Thank you for reading my extremely lengthy journey ~
Kelli – Nurse, Farmer, Yogini and Holistic Medicine Student





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April 30, 2020 Diana

Diana

I have a condition called hip dysplasia. I have hip dysplasia in both of my hips. At 46 years old I was able to get...

I have a condition called hip dysplasia. I have hip dysplasia in both of my hips. At 46 years old I was able to get a hip replacement on the left side. I did not know that I had hip dysplasia until I was thirty years old. It was a long time coming finding out what the actual problem was because as a baby my mom was concerned that there was a problem. She voiced her concerns to the doctors at the time of my birth. However it was never addressed it was never treated.  At 2 months old we Flew Over The Ocean to America. When we arrived here my mother also try to figure out what was wrong with my hips. Needless to say nothing had been diagnosed and nothing had been treated.As I Grew Older I was involved in sports and I was also wanting to be in ballet gymnastics and eventually I did do figure skating. In figure skating I was able to do most of the things that one does. But I was never able to advance and become a better figure skater because I was unable to move my hips certain directions. After that I went off to college and realize that that I was going to have a limp and a wattle probably for the rest of my life. The pain had not really came until I was roughly 22 years old. I did have a child at 19. And for some reason I had to have a cesarean section. The doctors were not aware of why they just decided that it was best to have a cesarean section. Slowly my knees and my ankle and my hip started to hurt but I muscle through it and kept doing what normal 20 year olds do… camping hiking biking and outdoor stuff and that’s when I noticed the pain getting worse.

At 27 I was pregnant again. My physician said that I was most likely going to have another cesarean section. Not because I had one before but because she said there is something wrong with your pelvis. I decided that I did not want to have a cesarean section. So I did not. And then I had another child at 29. I did not have a cesarean section then either. After that the pain was intense and much worse. I went to a chiropractor and a chiropractor noticed the way I was walking and decided that my back was probably not the issue. He took an x-ray of my hips they told me I’ve been having this problem my whole life. And that is when I found out I had hip dysplasia bilateral.The orthopedic physician I saw said that they could help me but I would have to go to a specialist and I probably would not have a total hip replacement but I would have to have some type of surgery to help with the socket. I decided I was not ready to have surgery at such a young age and decided to handle it with therapy and swimming and yoga. It worked out pretty well for about 7 years then I was pregnant again. And then I was pregnant again at 40. Needless to say I was not able to function quite as well as I would like to have had after my fifth child. So after my employment ended at my retail establishment where I was working I went back to school and then I was sitting quite a bit. This did not help the situation. My problems just got worse. So finally I did end up having a total hip replacement on my left side. Pain management was not the answer to my problems prior to the surgery. All that did was create depression and anxiety and an inability to feel not only the pain but the emotions that came along with the depression and caring for my children. So after the surgery I was excited to feel better. I did and at that time my partner moved in to help with the household chores the finances and the children. However that help came with a price.Because of my vulnerability and my inability to work I was a victim of domestic violence. After I was feeling better my partner was not happy with my ability to do things on my own and my mood changed from being dependent to independent. The abuse increased… and then the abuse became physical and I was pain free from four months after the surgery to approximately six months after the surgery when I was forced to defend myself and my right hip what’s had not been fixed had not been hurting but now was hurting just as bad as the left one was before I had the surgery. This made it very difficult to work and it made it difficult to concentrate again and as a result of all of this I am now facing foreclosure my van was repossessed I am unable to work and it is becoming more and more difficult to walk again. Some people think that you could just sit and have a job sitting is actually worse. The detective at the time of the sentencing of my partner who was convicted of assault told me that it is now time to step it up and get a job and just because you don’t have a car you can ride your bike to work.I added this because people do not understand how painful a hip is when it is displaced. The awareness needs to become more prevalent and when someone asks you what is wrong and you tell them it’s hip dysplasia… most people say oh isn’t that what dogs get?I am hoping that the future will be a little brighter and with all of these things happening I have found some very kind people to help and to guide me and to make sure that I am heard and that I am able to fix all the issues that I have two in my life and take care of my children. So please if you are in a situation where you feel like you are trapped because you are in so much pain and you are unable to walk and you are unable to communicate with your family or your friends about your situation keep trying and find someone to listen. You will be able to get through this it will get better.

And if you have children and or you are with children in a capacity where you notice that they have a problem walking and they are in pain. Just because their children doesn’t mean they don’t have pain. They need to be looked at and they also need to be heard.  If you ask a physician or someone that about your condition are your child’s condition or how you feel and you don’t feel comfortable with the answer keep trying keep asking. No one should have to live with this pain.

Prayers go out to all of you who are going through this. I am hoping that sooner than later I will be able to have this hip replace and recover in a more peaceful way. I am fortunate to have three older Sons who will be able to help me get through this and then I can finally lessen the burden on on them and I can be a better mother.





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April 30, 2020 Lucy

Lucy

Hi all, I want to thank everyone who has taken the time to write their stories, I have read them all and responded to some...

Hi all, I want to thank everyone who has taken the time to write their stories, I have read them all and responded to some and I’ve found each story an inspiration and helpful to me, and I would like to share my own.

I am 44 years old, and I have always been very active growing up I had no issues, I’ve got four children and had no problems having them, looking back my issues started in my late twenties I was visiting osteopaths for problems with my low back, at £30 an hour I didn’t go too often, but one of the many I visited told me I had issues he couldn’t fix but did not say what only that my hips didn’t have full rotation, fast forward to age 39 I was into my jogging after losing a stone and a half I felt great, but I remember a day when after going for a long walk I had pain in the left side of my groin, this came and went for a few months and then I was getting it daily, I told my mum and she told me I was born with hip dysplasia and that the doctor told her I would be okay because it was mild!! What?!
The shock and upset I felt was enormous, I felt let down not only by the hospital but my mum too, she told me I had a funny walk more like a waddle when I was young, but to me it was normal, I didn’t know any better, I cannot understand why she did not try to get me seen in my childhood and even more so why she never told me about it, I feel a bit distant towards her now because of it, but I hope one day I can put it right.
So anyway I went to my GP and immediately got sent for an xray which diagnosed bilateral hip dysplasia, however it still took 3 orthopedic surgeons, 3 hospitals, steroid injections, physiotherapy and 3 years to get to the point of surgery, in June 2017 I had a left THR and I’m now in the process of hopefully getting my right hip replaced.

It is such a painful condition, standing up and sitting hurts, my muscles are in a permanent state of stiffness and overuse, my si joints are agonising my right foot hurts and I struggle to juggle work and home life, but I keep going because one day I will wake up and have no pain i am hoping the op on my right hip will finally fix me.
In hindsight knowing what I know now I would have had both my hips operated on straight away, because now five years down the line my pelvis and legs are worn out and I have a lot of recovery to go through, I hope by telling my story it helps other readers like me, thank you for reading my journey with hip dysplasia.





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April 30, 2020 Yvette

Yvette

“Girl I am so proud in everything you’re doing! From your hip dysplasia, to graduating college, and your career!” my best friend tells me as...

“Girl I am so proud in everything you’re doing! From your hip dysplasia, to graduating college, and your career!” my best friend tells me as we’re waiting for our coffee. “Yea, it’s kind of crazy honestly”, I responded. “How so?”, she asked. I responded, “Growing up, I have had medical professionals giving my family and I such a pessimistic outlook on my quality of life with my hip dysplasia, because how unique my hip dysplasia is. Look at me now, being to be able to have a full-time job that requires a lot of physical activity, working out five to six times a week, hiking! I can go to Disneyland or concert festivals without a wheelchair! This is huge for me!” My friend responded back, “it should be huge for you! Everything you have taken on from last year to when you were a toddler was for these moments!”
On February of 1997, I was diagnosed with bilateral congenital hip dysplasia. My parents were finally relieved, or so they thought, that after countless tests, x-rays, and doctor’s visits for the past three years, that their three-year-old daughter will finally get the proper care she needs for her hips. I received my first, of many surgeries, on March 1997. The first procedure that was done on me was an adductor tenotomy and lengthening of the left hip because my left leg was ¾ of an inch shorter than my right leg. They also did an open reduction with internal fixation of the left hip and a Spica cast after surgery. In four weeks, I had to go back into surgery for my right hip. My second surgery was an open abductor tenotomy of the right hip, an open reduction of the right hip, a Varus rotational osteotomy on the right femur with semi tubular plates, and a Spica cast after surgery. From my first two surgeries, there was a complication. I had to receive a prescription for braces to help with my legs externally rotating out. My third surgery done in January of 1998 consisted of removing the medical hardware from my right hip, remove hardware from my left hip, and do a de-rotation osteotomy on my left hip because my left leg was still externally rotating. On April 1998 I was prescribed to a ½ inch shoe lift because my left leg got even shorter after my third surgery. My fourth and fifth surgery had to happen because of a complication. On July of 1998, my left hip dislocated, one of the screws from my derotation osteotomy broke and the deformity on my left hip increased. On September of 1998, I received my fourth surgery where the removed the left hip hardware and a vagus osteotomy of the left hip was done and I was in a Spica cast after surgery. My fifth surgery was done on December of 1999 where they removed the hardware from my left hip. From there, my surgeon for all five surgeries suggested for me to see another surgeon who specializes in hip replacements for patients like me because I will most likely be needing one, especially for my left hip.
We found a surgeon, but we pushed off a hip replacement because I was too young to have one. I kept dealing with the pain on and off for years, from going to multiple physical therapy sessions, getting prescribed multiple pain meds, being in and out of a wheelchair and crutches, and trying different types of holistic supplements to ease the pain and discomfort, but it wasn’t enough. I developed scoliosis because of my hip dysplasia and caused me to have a limp along with a leg length discrepancy. As I got older and went through puberty, I was in constant pain and discomfort. That pain level that the doctor’s ask you from 0 to 10, 0 being no pain and 10 being the most, I was never at a zero, one, two, or even a three. In all honesty, I felt uncomfortable in my own body, never felt good enough and I was beginning to not like, sometimes despised, being born with hip dysplasia. I developed a pessimistic attitude towards myself and others because of my hip dysplasia. Around high school I started to fight and hide the pain because I thought if I didn’t “need” the pain medications or the wheelchair, then I am okay and will feel and look “normal.” It wasn’t until I was 18 years old living in San Francisco going to San Francisco State University; my dream school. I was having so much pain on my hips that I fainted. I went to go see my orthopedic doctor to — as always– talk about the possibility of having a hip replacement. This time though, I decided to go through with it. After that incident, I kept thinking that there has to be something better than this. So, I decided to take on a total hip replacement on my left hip and partial reconstruction of my pelvis at 19 years old. The surgery was the easy part, the recovery was a nightmare…literally. I had nightmares for good while after this surgery. In addition to my nightmares, the muscle and nerve spasms, being told that I have to walk the day after surgery, having to lie in bed with a cushion between your legs for weeks, the list goes on, it was all hard, but it was all worth it. That huge lift I had in all my left shoes went drastically smaller that I can put it inside my left shoes and my limp has reduced as well, but I still wasn’t out of the woods.
Around a year or two after my hip replacement, my right hip was starting to have complications. That constant pain and discomfort that I was feeling on my left hip was now happening to my right hip. I was going back to physical therapy and taking pain meds for my right hip. Around the time I turned 21, I had to stop seeing my orthopedic doctors due to health insurance and my age. So, my family and I were back to square one in looking for the right doctor to help with my hip dysplasia. I met a new orthopedic surgeon. He suggested that a periacetabular osteotomy (PAO) would be the best thing for my right hip and it pushes off a hip replacement until I am much older. I said yes right away, but I was much more nervous for this surgery because I was not sure how my left hip was going to handle holding my weight while I am recovering from surgery since my left hip has always been the weak one. At 23 years old, I took the PAO, the surgery was a success, the recovery was hard on me mentally, but I was ahead of schedule in recovery and my hips never looked better and so bionically cool.
Now, I am 25 years old going on to 26, cleared to do any physical activity I am pleased to do. I work in a job that requires a lot of running, sudden movements, and lifting up to fifty pounds. I work out at least twice a day. I do yoga, hiking, swimming, and so much more. I’ve decided to get a personal trainer at a gym near my home and it has been the best decision I have ever done. My personal trainer specializes in rehabilitation and she has helped me through so much. I still have a lot of work to do since my hips have been weak for a very long time, but I am determined and hopeful. Despite these obstacles I have had throughout my life, I still tried my best to live my life as I normally can. I still went to college, I graduated from CSUF with a degree in psychology along with two AAs all during my last three surgeries. My goal right now is to become a child life specialist and to spread awareness about hip dysplasia. Despite the complications I have had as a kid, the mental trauma I had from the surgeries and in myself, as well as the pain I had to deal with, I do not regret it all. I have grown and learned so much with what I was born with. Most importantly, I would not be where I am at without my family’s support. My parents never gave up on my checkups, my physical therapist sessions, constantly getting multiple opinions from surgeons, and making sure I was always accommodated. My older brother, always making sure I was included in any way possible and making sure I always had a laugh during my recoveries. There’s also many aunts, uncles, and cousins that have supported me and comfort me during my recoveries. My friends for always helping me out in any way possible. I decided to write my story because I felt mentally okay to talk about who I am and part of that is my hip dysplasia. I believe I had to go through all of these obstacles to be where I am at to this day. I have a favorite quote, I do not remember where I have found it but it is, “With pain comes strength;” I believe we need to have a little bit of pain to help us grow and strive in life. I hope that with my story I can help someone out there, with or without hip dysplasia, and they can be motivated enough to go through those tough obstacles and succeed in life.





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