AddieI discovered my passion for running in elementary school shortly after I joined a running club called Girls on the Run. I remember coming home...
I discovered my passion for running in elementary school shortly after I joined a running club called Girls on the Run. I remember coming home from my second practice and telling my mom that I loved to run! It was in middle school that I discovered I not only loved to run but I was actually a talented runner. At this point I was competitively in both track and cross country and I began to place higher up in our small races.
Going into high school, I really didn’t expect to do well. But, to my surprise in my very first high school race my freshman year I won first place. Caught up in the moment, I dismissed the small pain I felt in my hip. A few weeks later the pain started to become more of an issue – it was there but I didn’t want it to hold me back. The first doctor I saw explained that the there was a possibility that the cause of the pain, the popping and the clicking was hip dysplasia. Later, scans and several other doctors’ opinions confirmed it, I had hip dysplasia.
My parents were consumed with worries; no one in my family had hip dysplasia. I had none of the typical signs presented at birth. How could we have missed it? What did this mean? Was surgery the best option? How would this effect my running? How would this experience affect me and change me? Initially, I wasn’t worried as I had no clue what this meant. My lack of knowledge left me in denial for quite some time. When the idea of surgery was presented to me my initially reaction was no way. Again I dismissed it.
Little did I know, this wasn’t a choice. The problems and the pain that the dysplasia caused were only going to get much worse and running wouldn’t be an option. If I didn’t have these surgeries I would most likely need a double replacement by my late 20’s. Both of my hips were far more damaged than expected making these surgeries necessary. It began to hit me, all of the hard work I had put into running was about to be thrown away. For the longest time before the surgery I still couldn’t quite understand.
This was all going on while I was in the middle of my cross country season. I pushed the thought and worry of surgery aside and continued to run, knowing this could be both my first and last high school season and I made it to the state cross country meet, the only one in my school to do so and the first freshman from my school to qualify.
I had my first surgery 2 month later. I would soon start from square one all over again, as if back in elementary school. I remember going under anesthesia as my eyes flooded with tears and I was rolled away from my parents starting to sob how I didn’t want to go. When I woke, which only felt like a short time, my parents had been waiting over twelve hours. When the doctor opened me up, she discovered the dysplasia was a lot worse than expected.
I recall not being able to sit up initially and every time I attempted to stand I was overcome with nausea. I left the hospital after a few nights and after missing some school and spending many boring hours in my bed surrounded by weird pillows, I eventually began to heal. From wheel chair to crutches I eventually was able to walk and eventually run again.
That first run, 5 months after surgery wasn’t easy. I worked hard with physical therapy but I still broke down several times, laying in the grass not wanting to get up half way through my run, in the middle of a park. I wanted to quit, but who would I be than?
Running had always defined me and in my eyes, at the time, I had lost everything. Over the summer I worked as hard as I was allowed to and participated in an unbelievable amount of physical therapy. By the next coming cross country season, 8 months later, all that hard work, all that determination had paid off as I made state once again. In fact my regional time was several seconds better than the previous year and I placed several places higher.
I had lost myself after surgery for some time, as expected, but I’m slowly returning to my old self still today. Today, my second surgery is exactly two weeks away. I do fear losing myself once again and being left with more pain than before, although I’d say the first surgery was a success over all. I know this one will be hard. Recovery will take a lot of time, lots of patients, and a tremendous amount of hard work. But I also know I have the strength to get through it and that I CAN get back out there and run again with.
Ali ZakHi everyone! My name is Ali, I am 21 years old and senior year nursing student OU. I am so glad to have stumbled upon...
Hi everyone! My name is Ali, I am 21 years old and senior year nursing student OU. I am so glad to have stumbled upon a page like this as I have struggled with hip problems since birth.
I was born with a left dislocated hip and bilateral congenital retro-version hip dysplasia that was overlooked until the age of 1 when I began to start walking. The journey ahead was along one including 6 hip surgeries from the age of 1-19 years.
I have gotten my labrum operated on twice in my left hip and once in my left hip due to tears from overcompensation. I received my first PAO on my left hip the summer after my junior year of high school (2013). The surgery was a major success with little to any pain in my left hip following.
Although my right hip was severely less dysplastic than my left I due believe that the reliance on my right hip during my healing periods caused the degeneration of my right. After my upcoming graduation in May I will be receiving my 7th hip operation and 2nd PAO on my right hip. Although it upsets me to go through something like this I couldn’t imagine not because it not only made me the person I am today, but also the nurse. My hip dysplasia drove me towards the nursing field, and I couldn’t imagine my life without it.
Amber’s StoryHello my name is Amber and I was first diagnosed with hip dysplasia at the age of 19, but the pain started long before I...
Hello my name is Amber and I was first diagnosed with hip dysplasia at the age of 19, but the pain started long before I was diagnosed. Growing up I played many sports such as basketball, soccer and softball. I never had any problems with hip pain until I was about 10 or 11 years old. When the pain first presented itself it was only occasional and seemed to flare up after a day of increased activity. I ignored it over the next few years and chalked it up to normal growing pains.
By the time I was 18 years old I started a waitressing job and noticed a large increase in the frequency and severity of the hip pain I was experiencing. The pain got so bad that it was hard to walk after a long shift, but when I would sit to rest it felt as though my hip was popping out of the socket. I couldn’t find any relief, so I finally decided to go to the doctor.
I went into my primary care doctor and she did an x-ray on both of my hips. She told me I had hip dysplasia and referred me to a orthopedist. I had an MRI prior to seeing the orthopedist. The orthopedist told me that the MRI showed that the labrum in my left hip was torn and my dysplasia on my left side was severe and would require surgery. On top of the hip dysplasia I also had stage 3 arthritis in both my hips and my lower back, the back arthritis was most likely caused by walking in an odd way to accommodate my hip pain for so many years.
After seeing a few other doctors over the next few months for second and third opinions, I made an appointment with a surgeon for a consultation. He told me that my left hip would require surgery in the near future because it was already so advanced. The only surgery that the surgeon recommend was a periacetebular hip osteotomy.
On July 11th 2011 I had the PAO on my left side. The surgery itself was about 6 hours long and I stayed in the hospital for 8 days. While in the hospital I had an epidural placed in my back for the first 4 days after my surgery, along with a catheter placed since you cant get out of bed. On the fourth day in the hospital they removed both of these along with the drainage tubes near the incision. By the time I left the hospital I was able to walk with my crutches and get in and out of bed with assistance. The surgery did leave a 9 inch scar, but would lighten up over time. At the 8 week post op date I was released to go back part time to work (I work at a medical office at this point) , to drive again, and to start physical therapy.
Over the next few years my left hip healed very nicely and I hardly experience any pain. But then came the time to talk about surgery on my right side. Both me and my doctor decided to proceed with a PAO on my right side so it didn’t advance as far as my left hip had.
I had my right surgery on march 6th 2014, and I’m currently 5 weeks post op. The experience was this time was about the same as the previous time although my surgeon switched to a new hospital. The recovery seems to be going well this time around also, but I will keep you all updated on my recovery.
AndreaI am a 20 year old female and was diagnosed with hip dysplasia almost two years ago. I have been active my whole life and...
I am a 20 year old female and was diagnosed with hip dysplasia almost two years ago. I have been active my whole life and am fortunate enough to play a high impact sport in college. Three days into my freshman year I was on a run and felt a painful pop in my right hip. I finished up the run but the pain got significantly worse as the day progressed.
I saw an athletic trainer who told me that I had injured my hip flexor and I had to sit out of sports for a while. When the pain didn’t get better and spread to my left hip, I had to get an MRI, which showed that surprisingly enough I had several tears and stretches on both hips. I went to a hip specialist so that he could tell me when I would be able to play again. I had no such luck. He told me that I was going to have to get a bilateral PAO sooner than later. The surgery was scheduled for late December and I got the right one done right after I finished up my classes.
I was on crutches for 2 months, then I got the left side done. I worked hard through the physical therapy with the goal in mind of playing again and 6 months after the left PAO I was. There was a lot of pain in the first few months and my hip kept on getting stuck, but I worked my way through it and played the entire season. The whole time however, I was in a significant amount of pain and my hip would catch randomly. I was also horribly out of shape. I would get pain in my lower back and shooting down my legs past my knees to about mid calf.
After the season was over, I decided that I was going to go all out and get my athleticism back or die trying. I worked my butt off all summer to increase my speed and endurance. I strained my right quad at the beginning and my right hamstring near the end. I would feel twinges all the time regardless of how well I stretched and warmed up. I still had the hip pain when I would run long distance, many sprints, or play and the back pain got worse and worse. I haven’t felt the shooting pain down to my outer calf as much though.
The only issue was that my endurance didn’t improve and my legs would give out just as easily as before. My speed didn’t improve, and the pain was just about the same as it was at the end of the season. Now I’m facing another season with no improvement to show from my hard work and a lot of pain to look forward to. Has anyone dealt with some similar issues, or had any problems returning to their sport after the operation? I really need to put this behind me and continue on with my life. It kills me knowing that I put my heart and soul into something and it just didn’t help at all. Does anyone have any advice for effective exercises to get back to the level I was before? Is this normal pain? Why is my muscle endurance not improving?
Bailey-Ann’s StoryWell, hello there, my name is Bailey-Ann, and I would like to share my story with hip dysplasia. When I was about nine months old,...
Well, hello there, my name is Bailey-Ann, and I would like to share my story with hip dysplasia. When I was about nine months old, I was adopted from China. While I was the Chinese orphanage, I was bundled up so tightly under an overabundance of layers, that I could not move a muscle. As I grew up, my parents and family knew that there was something unusual with my gait combined with certain physical limitations, which only deteriorated as time passed, which meant numerous visits to many different doctors. Growing up, as a result of the hip dysplasia, I was unable to sit “like a lady.” Not having the ability to sit like the rest of the girls, I developed feelings of abnormalities, and soon after, I started to question my femininity.
During my younger years, I was never picked on for my hip dysplasia. I was just another kid in the classroom. Unfortunately, as I grew up, as puberty started, the hip dysplasia become worse and more noticeable. As a result, I remember many, many years of taunting, teasing, bullying, abuse as a result of the hip dysplasia, my abnormal gate, my limping, and the fact that I could not sit like a lady, the fact that I had early onset arthritis and other issues that shall not be mentioned. As a result of the incessant abuse, I had major depression, self-harm, issues with body dysmorphic disorder for a long time—due to my various health issues and the side effects of the treatments, and even suicidal intentions and actions. I kept my parents in the dark for quite some time about everything to shield them, but they found out. After they found out, I got treatment.
Moreover, just when I thought my life was back on track and everything would be okay; however, in my junior year, something else happened, I got sick (not from the abuse). It was apparent that I had physical limitations and abnormalities; however, there was still no definitive diagnosis. Unfortunately, I was in an immense amount of pain. The pain I felt was like nothing I have ever felt before. spent my junior and senior years of high school, juggling academics with hospital visits, procedures, and tests to find a diagnosis and a treatment plan for my orthopedic and other physical health issues. Finally, after all of the years of seeing doctor after doctor after doctor and undergoing tests after test and test, doctors were able to give me a definitive diagnosis and treatment plan. I have DDH (developmental dysplasia of the hip). To treat this condition, doctors said that I would have to undergo not one, but two corrective surgeries. The summer before I came to college, I had a femoral de-rotational osteotomy. To successfully correct my physical deformity, the orthopedic surgeon had to break my leg in three places and nail a rod to hold permanently hold my femur and to my hip and place screws to correct the deformities.
I received treatment to correct my abnormal gait, to gain better range of motion, and to fix my legs and hips so that I can walk normally. Before my freshman year of college, I decided to have my right hip operated on for the right side was worse than the left and the left side next. During my stay at Children’s Hospital, my parents noticed immense, positive changes. While in the hospital, I was able to close my legs for the first time. As of now, I am recovering from both surgeries, I got contacts, and I made other aesthetic modifications to basically make myself over and to slowly boost my self-esteem. I am currently able to walk straight for the first time in my life. Furthermore, I am currently a premedical student at Austin Peay State University.
BekkahI’m Bekkah and I’m 21 from Scotland. From a fairly young age I’ve always walked with a swagger and sat with my legs in a...
I’m Bekkah and I’m 21 from Scotland. From a fairly young age I’ve always walked with a swagger and sat with my legs in a ‘w’ position. No indicators at birth that anything may be wrong with my hips and that continued until I was 16. I was a very active young person, I Thai boxed at a competitive level, played football and danced as part of my theatre school, there is suggestion that the amount of activity I took part in helped to strengthen the muscles outside of my hip joint and keeping symptoms are bay. At around 15, I took time out of all extra curricular activities to study for prelims and exams and soon after would rather have spent Saturday nights with my friends than in the gym or studio. I fell away from everything.
A few months later and I start having severe discomfort and pain in my left hip, I stop taking part in PE, and dread my waitressing shifts due to pain. I start to fall down the stairs and experience a dislocating sensation. I go to see my GP who tells me it is growing pains and not to worry. I persevere with my hip for nearly another year with a few nasty ‘dislocating’ episodes and tumbles down the stairs. During my 6th year in high school I had one of these ‘dislocating’ episodes after losing my footing on a concrete stair well in school, my mum came and got me to take me to the hospital.
After several X-rays, the doctors couldn’t believe my mum when she explained I hadn’t had any previous issues with my hips as a baby. I was referred to a specialist and told that surgery may be the only option.
I was referred to the new University Hospital where I met the fantastic surgeon that has seen me through tears and tantrums. He made a very basic explanation to me about what bilateral hip dysplasia was and how severely affected my hips were. He told me the pros and cons of surgery and sent me for a million X-rays. He then told my mum and I that he would have been apprehensive to do the surgery as my dysplasia was the worst he had seen.
June 2015 at 19 years old I went in to have my left hip corrected with a Gantz Osteomy, my surgeon snapped my hip in 4 different places and held it together with 4 screws. I came out of surgery 6 and a half hours later having had an epidural with a plethora of problems. My operated leg was mobile (it definitely should not have been) and my right leg was dead to the world.
I had to remain in intensive care until my epidural could be removed. After being wheeled to the ward where needles to say I was the youngest patient by miles, my recovery soon began. It was a long and winding road, the bruising I had was horrific and the nerve damage I had post op, I never had any feeling return. I hated my crutches and how immobile and dependent I was on other people made me miserable and grouchy.
The race was on to be better and off both crutches for the new uni semester starting in September. 11 weeks of hydro and 9 of physio helped along the way.
Still have 4 screws in my left hip and going in for same procedure on my right in June 2017, but I’m wondering if the procedure helped. I still feel much discomfort in the left hip and due to using my right as a weight baring leg, it is much worse now than it ever was…
Bionic hips please!!
DaniëlHelloMy name is Daniël and I am 18 and just about to start University , I was a bit scared to post my story here...
My name is Daniël and I am 18 and just about to start University , I was a bit scared to post my story here because so many of you have seem to have it so much worse than me, in fact my story is really a success story
Lets just start at the beginning. I went to the doctor for the first time about this problem when I was about 8 years old when I still lived in the Netherlands. My mother noticed that something was wrong with the way that I walked and the doctors there indeed also noted the (‘chimi chungas walk’) and took x-rays of my legs and confirmed a difference in the length of my legs. I got special elevators in my shoes and that was the end of the story, but I was still in pain and walked funny.
When we moved to Canada the whole medical process had to be started over again. The family doctor was understanding and sent me to a specialist so we continued the process of figuring out what’s up. This time the specialist took an x-ray of my Hip as well and there I was diagnosed at the age of 11 with Hip Dysplasia. During middle school I had 3 surgeries done to attempt an early correction of the problem, one on the right which was very successful and one on the left which prolonged the live span of the hip but needed more work at a later date, and then one last one to remove the pins because I am quite skinny and I could feel and see them, which was unpleasant. Luckily i am quite good at school and tbh it’s middle school so I didn’t miss out on much anyways. The recovery time for these surgeries was rather minimal to the last one I’ve had
Let me also just say that I was lucky to have an amazing surgeon who came to visit me in the hospital often even on his night off just before he went to the opera with his Wife. He listened and explained everything to me and I wish that everyone could have such an amazing, helpful specialist.
The pain started to appear again when I was 17 and it was clear that another surgery had to be done, I was walking with a cane at this point and could barely participate in sports, I had to quit my swim team due to the pain. Swimming was my passion and the sport which I had been doing this whole time. Instead for exercise I met up with a personal trainer who helped me and taught me how to workout ( I think this really helped my confidence too which gets pretty low when your walking around with a cane and a bit of a hunch back like that guy from Notre dam. It was a great feeling when I bench pressed over a 100 pounds for the first time. The worst part to me in this period wasn’t my pain, I could deal with that like i have been my whole life, it was rather the lack of mobility that frustrated me not being able to sit down for an hour without getting pain, not being able to stand up, etc. I had a bed with a memory foam layer on top of my mattress and truly it was the only reason I was able to sleep at night at all. ( or maybe that was just me being a teenager.).
So I had my surgery during the winter break of Grade 12 which worked out pretty well timing wise. The surgery was a Bernese PO on my left hip and was done by two surgeons in Calgary. I Live on the west coast so that commuting sucked, plus at that time we lived on a small island so for after the surgery we hired an private ambulance to come pick me up at the airport and then drop me off at my bed at home ( see image).I lost a lot of weight to the point where the pain killers had to be inserted into my thigh because there was no fat on my stomach for the needle to penetrate. My recovery took a long time, and there were some moments where I truly thought I lost my sanity. Some of the after effects of the medication were rather unpleasant, and I’d rather not talk or remember my time in the hospital I don’t feel that to be appropriate nor on subject.
that picture is me on vacation in California on the spring break I finally got off crutches after that and switched to one crutch as I was regaining my strength. I walked with a cane for a short while and now here we are. Fully mobile, I bike to school every day and though there are some sports I am unable to do, I feel so much more free than I felt pre-surgery. Sure I can’t go for a run or hike without my cane or do anything that has too much impact on my hip but there is so much more that I can do.
Now we haven’t fully decided whether or not to do the surgery on my right hip as well but I think for now that I’d rather put it off. I haven’t felt limited by my right hip and until I do, I’d rather not go through a surgery. This hip will last me about 10 years , after that I will need a replacement hip, and I am okay with that, 10 Years is a long time for someone who has only been alive for 18.
I do not regret for a second the surgeries that I have had, I could not image living without them.
Feel free to email me or comment any questions you have. You can reach me at email@example.com
Thank you for reading- Daniël
DanielleHello my name is Danielle. When I was junior in high school, about 16, I was diagnosed with DDH. I was very active all my...
Hello my name is Danielle. When I was junior in high school, about 16, I was diagnosed with DDH. I was very active all my life but when I started running track my junior year I had a horrible pain in my right hip my coach took me it was in my mind so keep running. The next morning I couldn’t move or get out of bed so my mom made a doctors appointment with my family doctor. He took x-rays and could not see anything, but told my mom and I that he will send us to an orthopedic doctor to make us feel better.
When we got to midlands orthopedic Dr Fredrick Piehl had new x-rays taken. When he came in and slouched in his chair, he asked if this is how I sit, I answered yes. Then he asked if my hips ever popped or hurt growing up. Again I answered yes but told him my family doctor said it was growing pains and i’ll get over them. Dr Piehl then told me I had DDH in both hips!
My right hip was worse than my left. At the time it was 50 degrees off while my left was 45. I had to have reconstructive surgery that year but I put it off till after football and I cheered half of the basketball season. It was tough being 16 and have to have hip surgery but that did not stop me at all. I recovered quite fast and I was back in sports a month ahead of the normal time.
I made my senior year cheer squad a week after I got off of crunches, with the doctors approval of course. I was 20 when my left started acting up so I had to have another reconstructive surgery. Dr Piehl did the surgery and all was smooth.
I am all better now with and do not need to have anymore surgery!! YAY!! I spend time now telling people about what I have and to make sure you get your child checked!! Thanks for letting me share my story 🙂 God bless
EmilyHi guys, I’m Emily and I would like to share my story with hip dysplasia. I was diagnosed in the first week of august 2015...
Hi guys, I’m Emily and I would like to share my story with hip dysplasia.
I was diagnosed in the first week of august 2015 when I was 12 years old. I have hip dysplasia in both sides of my hip. When i was diagnosed it was the day before we moved to the UK so I couldn’t start treatment in my old town. when we had a short interview with the school deputy headteacher my parents told them about my resent diagnosis and gave them a document from the doctor that diagnosed me that I couldn’t do high impact sports for a year. My PE teachers didn’t seem to care about it and they still don’t but i’ll get back to that later.
During that year my PE teacher didn’t like the fact I wasn’t participating in lessons fully and the next school year when I had the same teacher again they congratulated me on joining in more which I realize was fairly rude of them as I can’t do anything about what a doctor told me NOT to do.
The next few years of school even in present time is a roller coaster of getting annoyed at PE teachers and the entire school because unless you have a note, a visible disability or have learning difficulties the school doesn’t care if you can’t do something and expects you to things that on a bad pain day you just can’t be asked to do it, but PE in my school is the absolute worst.
Last week I had PE as my lesson and we were playing badminton which as I believe most of you know is a impact sport and when I sat down to rest my hip after it started to hurt, they made me get back up and wouldn’t let me sit back down again. This week my hip is feeling the consequences of my PE teachers and because I’m 15 now i just make fun of them for being so ignorant about things like this even though the school knows about it and I have told them about my diagnosis but the only thing they can say is ” Emily, you better get that checked out”, and I’m all like well nah its not like I haven’t told you twice this month that there is something not right with my hip.
Now back to the school, sometimes I have lessons on the first floor to then go up to the 3rd floor to then almost get trampled going to the ground floor for lunch to then have last lesson on the 3rd floor again. The thing is the school has lifts for people who have difficulty getting up the stairs which is all well and nice however 80% of the time that’s me and I’m not allowed to use them because like before I don’t have a note or I don’t have a visible disability, almost like INVISIBLE DISABILITIES never existed and that annoys me the most, the school is like if you can get to school without crutches or have a note you can go up and down three flights of stairs all day long.
In my old school you would be the friends of either the dinner lady or the PE teachers because to get to all other places you needed to climb stairs, even to get to the first aid room and that school was amazing, the school I’m in now if you haven’t seen it yet not so much.
Now no more school talk. My mom has Hip dysplasia too, and the obvious stuff she tells me when I tell her that my hips are hurting is the same no matter how much you tell her, mainly the stuff she was told by a DIFFERENT doctor. She says things like “lose weight and that will help” and I’m like “I know mom but if that was so easy you would be thin too wouldn’t you” not like that’s annoying at all she also says “you need to walk more” I have actually said this “My school is a literal treadmill”.
I will update you guys if you want that is if things change or I just want to rant about how the school is most likely not going to change when we get a new headteacher in January and when I go into 6th Form.
HannahHey everyone! My name is Hannah and I am 17 years old. I am currently a patient at Children’s Healthcare of Atlanta. My journey with...
Hey everyone! My name is Hannah and I am 17 years old. I am currently a patient at Children’s Healthcare of Atlanta. My journey with hip dysplasia began seven years ago when I was going into 5th grade. It was summertime. I was involved in competitive dance, and I also played golf several days a week with my family. On this particular day, I had been to golf camp that morning and then went to speed and agility training that evening. I remember sitting at my kitchen table that night and my mom asked me to take the dog out, so I stood up to walk outside but immediately started screaming. I had a sharp, shooting pain down the side of my left leg. We went to Urgent Care and I was told that I had a sprained hip. By the end of that summer, I was still struggling with a lot of pain. We went to the doctor and I was diagnosed with bursitis and snapping hip. I did about a month of PT and still was not improving. We went to see a chiropractor that we were referred to by a friend. He was also a physical therapist, so he worked with me a lot on strengthening my hip to see if I could get better. No improvement. I continued to get worse and eventually could not walk, so crutches it was. The chiropractor was examining my hip and said that he could feel a torn muscle in my left hip and that we needed to go see a different orthopedist, so we did. The orthopedist sent me to a different physical therapist, but I still could not walk. We then went to yet another orthopedist. He ordered an MRI and found that I did have a torn muscle, evidence of a fracture, and I was also missing a muscle in my left hip. So more physical therapy. After two months of PT and four months on crutches, I was able to walk again! I got stronger and really was not struggling with my hip at all anymore! In 6th grade, I went back to dancing, but after a few months, my hip started bothering me again. I decided to stop dancing, and that was very helpful. The pain went away and I was able to do most ‘kid’ things.
In 7th grade, I decided to try something new and play lacrosse. I fell in love with lacrosse. My first season went so smoothly. No hip problems at all. Spring season came around and I started struggling with sharp pain and clicking/popping in the same hip. Ugh. I was very frustrated that the pain had come back, but I pushed through and finished the season.
I took the summer to rest, but the issues only worsened. We went to see a different doctor and they recommended that we try another round of physical therapy, so that is what we did. I loved my physical therapist and really trusted her. After several weeks, she talked to the doctor and they agreed that an MRI would be helpful. The MRI showed fraying in my labrum, but the surgeon was not comfortable operating. We tried several different injections into my hip to relieve the pain, but nothing really fixed the problem.
In December of my 8th grade year, my physical therapist referred us to a hip specialist in Atlanta to get a second opinion. After an exam and one X-Ray, he diagnosed me with bilateral hip dysplasia and FAI (femoral acetabular impingement). He also ordered an MRI that confirmed a full tear in my labrum. In February 2017, I had a hip arthroscopy to repair my labrum and correct my FAI. The surgery was a success, but about eight months later, it was decided that I would need the PAO on my left hip for my hip dysplasia. In February 2018, I had my LPAO, and it was successful! I felt SO GOOD that summer, almost like a new person. During my sophomore year, I decided to try something new and tryout for my school’s swim team. I loved swim so much. During swim, I struggled a little bit with my hip, and I even had my screws (from the PAO) removed in the middle of swim season and took three weeks off, but I came back to finish the season!
During the summer going into my junior, I was still struggling with some pain, and I started walking very weirdly. My left leg would swing out to the side every time I took a step. This lasted several months but improved after several weeks of wearing a brace I had from my arthroscopy. I went back to see my surgeon and he decided to order a fresh MRI to see what was going on. The MRI showed some damage to my labrum and that I also had a lot of scar tissue and adhesions in my hip. He did a steroid injection, and it worked so he knew that a repeat hip arthroscopy would probably be best. In February 2020, I had surgery to repair my labrum, scrape out adhesions, and shave off a little bit of an impingement on my femur. The surgery was very successful, and my doctor was very pleased with how it went. He was confident that this was my last surgery! My recovery went smoothly, and I was improving slowly, but surely! At the beginning of May, I suddenly lost all feeling and ability to move in my left leg and my foot was blue and cold. I was taken to the E.R. and admitted to the hospital. After having brain, spine, and hip MRIs, and being examined by orthopedic specialists and a neurologist, I was sent home. I was told that this was something called Conversion Disorder, which can happen after a trauma, such as surgery. It took about three weeks for my leg to fully wake up, but I am doing very well now!! I am actually running a little bit and I don’t have too much pain! My surgeon and my physical therapist are very happy with how I am healing and everyone is very confident that I now have a healthy hip!
I truly wouldn’t trade this experience for the world. I have learned so much about myself and about other people. I have become stronger than I thought I could be. I have also figured out that I want my future career to be involved in medicine so that I can help other people through their experiences. Though this journey hasn’t been easy, I truly would not be who I am without it. I am also BEYOND THANKFUL for the doctors, nurses, and my physical therapists that have taken care of me throughout all of this. They are truly the best!
My message to anyone that is struggling with hip issues and has received a diagnosis or has not yet received a diagnosis is PLEASE do not give up!! I know how difficult it is to not know what is wrong with you and to feel like you won’t find a way to feel better. I know that these hip issues can cause so much stress. And I know how badly we all want to just be able to do what we want without worrying! Don’t give up.
And to the people who have had hip surgery, you are so strong. It is not easy. Now it’s our turn to help those who are experiencing this after us.
HayleyMy daughter was 15 yrs 3 months old in Oct 2013 when we found out she has HD in both (right worse than left) AND...
My daughter was 15 yrs 3 months old in Oct 2013 when we found out she has HD in both (right worse than left) AND was a great candidate for PAO (periactebular osteotomy) BUT wait till pain came as could go on for yrs with NO pain (which we prayed & prayed that would be the case as she is not a sports player & never has been just in PE in school).
How we came about discovering she has HD was what I say “by a fluck” as her orthopedic specialist had been treating her like for almost 2 yrs prior to Oct 2013 for a LEFT knee injury/pain from when she was playing basketball in PE she jumped & “landed wrong” she was in braces/no weight bearing/no bending type braces/on crutches and NO PE for almost 2 yrs & still was having “problems/ pain” (it got to the point also he had to refer her to physical therapy to learn to walk AGAIN without braces & crutches—which they did in a 2 hr session—yea I know it sounded funny to us also of having to have a 15 yr old taught to walk again–but she had that weekend off school & Mon was a holiday so the therapist told her she will allow her to use crutches only in school starting Tue for ONLY 2 weeks–well after the session she said I AM GOING TO SCHOOL ON TUE WITH NO CRUTCHES and by golly she DID–I called her therapist & told her & she was even surprised at her determination)but back to her HD part.
We got xrays of her hips as Dr thought the pain might be coming from hips so he got them back & came into room & asked me if she was 1st born (no has 12 yr older brother) was she breech (no) if anyone on either of our sides has hip dysplasia (I said what is that) so he said that is prob a no & said she has hip dysplasia right worse than left & has to send us to a Pediatric Orthopedic Specialist. So got appt there in Oct 2013 & that was when the new doctor came in & told us she is a great candidate for PAO BUT let’s wait till pain shows up as could go for many yrs without pain so that was our plan but with like yrly checkup. She got thru her 16th birthday in Jul 2014 & rest of Summer well. She done good no pain UNTIL she started school in Sep 2014 in which she was walking 7/10 mile to school & walking from class to class (we had just had new school built 1 level not 3-4 level AND NO stairs) from 1 end of building to other & walk back home 7/10 mile.
By Oct 2014 she started getting pain from her right hip area–called her Dr & told her—she didn’t think there would be any changes on xrays so didn’t take new ones—so they told her very minimum walking (no to & from school no walking without crutches IN school & had her on very minimum PE) well by Nov 2014 pain started getting worse so they took her out of PE classes for rest of yr & still other restrictions in hopes pain would go down—end of Nov they injected her hip joint with a “test” injection (if it helped relief pain for the 6 hrs it was to then they knew it was in joint from her HD—it did) but it wore off so pain came back AND STILL DID NOT WANT TO DO ANYTHING MORE as they said “it can’t be causing much pain” so I called another Hospital (come to find out her Ortho Spec works there on Tue’s also) we got an appt there within a 1 1/2 weeks time AND it WAS ON A Tue—so got there to register her & all & they asked if we wanted to see our original doctor as she was there today and I said NO we came here for 2nd opinion with a DIFFERENT Dr & we didn’t know she works here also but NO–we got with with a new doctor & she was very thorough (4 hr appts—including NEW xrays/getting orthotics/another injection/AND finding out she also has “knock knees” & in-toeing bad AND flat feet but the whole time there we had to wait to see Dr/etc maybe only 20 mins as rest of time we were doing something with Dr/nurse/etc).
Well the new doctor set up surgery for her Derotation of femur & tibia on right for Apr 14th as she said her HD was mild & hopefully with orthotics AND this surgery pain would go away. Our doctor knew we were there so she called to see how Halo’s pain was in hip & I told her it was still bad. So put her on Naproxyn (well that for some reason gave her headaches/migraines) so the “best” they could do was have her take Tylenol AND Ibuprofen (which by Mar she was taking the max of them which was 4000 mg Tylenol AND 1600 mg of Ibuprofen A DAY) and also was starting to miss ALOT OF SCHOOL cause OF PAIN was getting worse! Well make story not so much longer—her surgery was cancelled cause in Feb 2015 she had developed tingling/numbness in her right leg/foot and her pain was up to like 6-10/10 on most days (so missing ALOT OF SCHOOL)—took her to local ER & even her Pediatrician til FINALLY in like beginning of Mar (I believe) hospital said let’s get her in to get a EEG (or whatever it is to check nerves) to make sure no nerve damage before we can set up surgery again.
Well had it done & NO nerve damage. So on Mar 18th we went to Neurologist just to further tell us no nerve damage but still don’t know why numbness/tingling as everything is ok so I just jokingly said well it was prob the pain saying hey u been in so much lately I will just give u more “symptoms” and the Neurologist said yea probably (I laughed in her face cause I could not believe that she agreed with me). The doc had viewed her new/old xrays/mri’s/ct scan (other hospital ordered special scans be done back in like Jan & it was done somewhere else but I am sure he seen them also)and her records prior to coming in to talk to us so he said yes she is a great candidate for a PAO and I can do it on May 14 and he took her off crutches she was on since Oct & put her in wheelchair for NO weight bearing just around home very minimum.
She had missed over 100 days of school cause of pain. She had her pre-op done on 13 May & had PAO on 14 May starting at about 8:38 AM (had to go to a “pre-op” room to put IV in where I got to go back with her then they took her to a “block” area where I couldn’t go as they put in the epidural then take her off to surgery so I went back to waiting room to wait with her dad. It was about a 2 hrs surgery then had to wait til she was in recovery room where I joined her but found out she had to be transferred to a different hospital (as she was underweight of less than 100 & they were not set up I guess for peds under 115 lbs) so they made an exception for her dad to come to recovery also when I told them he would be going in ambulance with her & I would get her things in car & transfer over there—they had to wait till like 1:25 pm when they got call there was a room available for her then had to call for ambulance and then wait til they were available not on calls as calls took precedence over transfers so by 3 pm she got there (thought having her dad there would help her but she had an anxiety attack & thankfully he was in front and EMT was in back with her).
She had to stay in hospital 2 extra days as she wasn’t keeping food/water down they FINALLY got the right pain meds for her (had to go thru diff one’s till they found correct 1–Oxycodone) even if they had her on a med schedule to try stay ahead of pain before they figured which 1 she had 2 horrible painful days after surgery (15 & 16) but day/night of surgery she was great (she had told us like on the 13th “it seems like I am in a dream I can not believe this is going to happen tomorrow” and when we were in the room having IV put in she said “mommy am I dreaming or is this happening” & I told her “no dreams it is real”–in recovery she even asked me “mommy am I dreaming that I had surgery”” I said no sweetheart you had it” and she said “it don’t feel like it cause there is no pain”) She couldn’t even believe it happened the rest of the day as no pain. On 15th & 16th we could not take it seeing her in that pain she was in till they figured out the right meds & dose–we were relieved as she was also.
Since the 17th in hospital till 19th they kept her pain free as she was on a schedule to stay ahead of pain. When we were getting discharged they gave her some Tylenol AND Oxycodone for the 2 hr ride home. Since we got home the 19th we gave her Oxy & Tylenol before bed as pain cause of getting in & out of car & in house & all but also in hopes she could sleep better. She stayed upstairs sleeping in recliner at nights & during days napping. But since the 19th she has had to take MAYBE 6 Tylenol (1000 mg) & MAYBE 6 Oxycodone—which is not bad at all. But since about 26th I think she decided that she wanted to be in her own room AND sleep in her bed as she hadn’t done in about 2 weeks so she has been going down 12 stairs at night & up 12 in mornings with us going down with her to be there/help her get down & get into bed & all as still in crutches & no weight bearing/etc & in morning going down to get her up from bed & up stairs/etc.
She still in ways thinks its a dream as no pain. She has gone through ALOT with this prior to surgery cause of pain then her school was terrible against her & us (we tried to work with them but they didn’t seem to want to work with us). Thankfully she did not have to go back to school when she got home as our doctor said no school till 5 Jun (her school had only till 2 Jun) AND she was to have a tutor in home 5 days a week for 1 hr a day (as he thought she would have to take the narcotics more than she did I guess he was basing it on pre-op pain) well school got a tutor in for 6 hrs for 6 days and then when I asked to extend it so she could catch up more they said no we just did it for those days for her cause we did not have to—I said whatever. So now school is over for Summer she is also in better spirits cause no worrying about them (I told her do NOT worry about school during your recovery/Summer). WE ARE SO HAPPY TO HAVE OUR DAUGHTER BACK—I say that cause the pain she had to endure all them months she “was not herself” so down/upset/in pain/crying/etc. It is so good to FINALLY NOT SEE HER IN PAIN and in such a better mood & all! If any questions just ask me I will try answer them!
IrlaHi! My name is Irla, I’m 19 and I’m from Italy. I was born in Albania, where I was diagnosed with congenital bilateral hip dysplasia...
Hi! My name is Irla, I’m 19 and I’m from Italy. I was born in Albania, where I was diagnosed with congenital bilateral hip dysplasia at 2 years old. After that, my parents decided to move to Italy so that I could have surgery in a more advanced hospital.
I was 4 when I had my first surgery on my right hip, 5 when they first operated my left hip; they broke it into pieces and secured it with a femoral locking plate – which I still have. I only remember the uncomfortable cast and the excruciating riabilitation, nothing else.
When I was 7 years old my family and I decided to move to Northern Italy so that I could be visited by an amazing orthopaedist. I had my third surgery in 2011. After many X-rays, CT scans and MRIs I was told my left femour had been rotated wrong by my previous doctors. During that summer I was hospitalized. I remember vividely the pain after the surgery, the itching, which would never let me sleep. I remember that ugly, heavy cast and being restricted to bed for fifty endless days, completely dependent on my parents. I remember taking the cast off and almost fainting while the nurses helped me to get up. After that, I did riabilitation for what felt like ages and it took me 4 months to walk without cruches.
My journey has not come to an end. I cannot run, walk fast or walk for long distances. I have very little mobility in my right hip and because of this I’m going to have a femoral head replacement in the next few years – and I cannot wait!
I deal with pain on a daily basis but it is nothing compared to emotional pain. At 14 years old I began hating myself, my scars, my hip dysplasia. Depression hit me hard. I had suicide instincts almost every day for months. To me, hip dysplasia means being stared at, bullied and humiliated every time I step foot outside my house. I used to cry every single time a person stared at me. Oh, the stares; they never stopped.
During the last few months I stopped hiding my hip dysplasia. I stopped caring about the stares, I stopped feeling anxious and trapped while passing by a group of people. I want to be an example to every person who knows me, and for those who do not. I cannot imagine a life without my birth condition; I would be a complete different person.
To me, the hip dysplasia is who I am. I consider myself as unique, and unique is beautiful. I cherish my scars – I embrace them. I am not just a woman, I am a bionic woman. I know my worth.
IVI always knew something wasn’t right with the way my son walks. Since a young age he seemed to have what we called a “signature...
I always knew something wasn’t right with the way my son walks. Since a young age he seemed to have what we called a “signature walk” a cool, calm and collective relaxed very smooth walk. Whenever I would mention to our pediatrician she would say there was nothing wrong and that he was probably just going through a growth spruts.
He has always been healthy and very active as a child and involved in various sports teams and activities. But it wasn’t until he experienced an injury freshman year while playing for his high school football team, which required an x-ray of his hip. First we were told by the sports medicine doctor that he injured his hip flexor and immediately begun therapy and continued to play on the football, basketball and currently wrestling team in high school. Because his “hip-flexor” was becoming unusually bothersome we decided to go in for another checkup.
This time (December 2014) the sports medicine doctor informs us that what my son, now a HS senior age 17, has is Hip Dysplasia and will need surgery to fix the problem and to prevent him from future complications. We were referred to 2 orthopedic surgeons of whom both confirmed him having Hip Dysplasia. I know he is young and strong and can bounce back from this, but as a parent I am afraid and very concerned for him. I also understand that the two surgeons here in Northern Ca are two of the top surgeons in our medical facility for this procedure, but I am still very worried for possible complications during and after this procedure.
If your teen has had a similar situation or if your teen is currently experiencing this, I would very much appreciate hearing from you.
Thank you kindly.
Kara’s StoryMy name is Kara. I am 19 years old and was diagnosed with Hip Dysplasia when I was 17. I have always been a very...
My name is Kara. I am 19 years old and was diagnosed with Hip Dysplasia when I was 17. I have always been a very active person. I played softball and basketball on school teams, and have danced since I was 4. During my high school years I was on the swim team and ran track.
During the Fall of my senior year of high school, I was sitting in AP Calculus class and leaned forward to pop my hips. Dancers pop their hips regularly because it enables them to have a wider range of flexibility. I always popped my hips and was fine, except this time I was completely stuck. If I leaned up to straighten back up, then I would be in excruciating pain. Well, I was the next person up to solve a problem on the whiteboard and when my teacher noticed I was stuck, she immediately went and got our first responder which happened to be my Allied Health Sciences II teacher. I had been in her class earlier that day and was completely normal, and now everything had changed. The longer I stayed there the looser my hip became and about an hour later (30 minutes after the bell had rang to dismiss school for the day) I was able to stand. If I put weight on that leg (my left one) it would completely crumble right out from under me, so they wheeled me in a computer chair to my car. I was able to drive because it was my left hip affected, not my right.
I was very determined to go to swim team practice that afternoon so I made myself walk laps around my house, and eventually I was able to walk with a small limp. My pain had almost completely subsided after swim practice and I was able to go about my normal routine. I was so confused about what just happened and why I was able to walk normally when hours earlier I was completely stuck. The pain was absent for the next month or so, and then came back. I went to my family doctor that I had been going to since I was a year old, and he referred me to my orthopedist who I had gone to for shoulder problems the year before. He diagnosed me with snapping hip syndrome and sent me to physical therapy. I was familiar with the PT process because I had gone for probably 8 months or so for my shoulder.
After a few months of therapy and no progress, he referred me to a surgeon about 30 minutes from my house who works at a local university hospital. I went to see him during the summer and had countless x-rays and an MRI-arthrogram which showed I had hip dysplasia and torn cartilage. He is known for hip arthroscopies, so he referred me to another surgeon who specializes in hip dysplasia.
I had my appointment with the doctor and he told me my options. I could have a PAO and hope the labral tear healed on its own, or I could have the hip arthroscopy to repair the labrum. The problem with the latter option is that with my joint so instable the labrum could easily tear again within a few months of the surgery. After praying about it and talking with my parents and sister who is a nurse, we decided it would be best to go ahead and have the PAO and hope the labrum would heal on its own. I was not sure what to do knowing that I was supposed to go to college in a couple months and knew that I could not have a major surgery and walk around a big campus. I also knew I could not wait until after college to have it because the longer I waited, the worse it would get. I decided to enroll at a local community college and take all online classes so I could do my work on my own time and rest when needed. We scheduled the surgery during the coming winter. Every day the wait got harder and harder being that it was mid-summer and my surgery wasn’t until well into the winter season.
When my surgery date came, we woke up at 5:00AM because we had to be at the hospital at 7:30 and surgery was supposed to start at 8:30. Things went as planned and after prayer with a friend who is a youth minister and my pastor, I was off to the operating room. I was in the OR for 8 hours and after I had recovered enough, I was taken up to my room. I was only supposed to be in the hospital for 3 days, but wound up staying for 9 days because of a post-operative ileus, which is basically when your bowels do not wake up from the anesthesia. My bowels were so backed up, I took one bite of spaghetti and threw it right back up because there was nowhere for it to go. It was disgusting! My surgeon restricted me from food and drink for 48 hours, and the only way I was able to stay hydrated was from IV fluids. Finally after 9 days I was allowed to go home! Recovery was not fun at all, and was pretty painful. One of the hardest things was not being allowed to bend more than 90 degrees. I couldn’t even put my own shoes on! PT was hard as well, but my therapist had a great sense of humor and I was able to get through each appointment more and more easily as time went by. Eventually, things were going smoothly and with much humor and prayer, my family and I survived the PAO process.
The following summer I was experiencing some more pain and my PT wasn’t quite sure what was happening. I had a cortisone shot because the first assumption was that I just had some extra inflammation that needed to calm down. After waiting for a bit to see if that worked, we realized that it was not going to do the trick. I noticed that I could feel the head of my screws just by touching my incision and I was grossed out. I went to see my orthopedic surgeon and he suggested that since my bone had healed he should go ahead and remove the screws, and that would hopefully help the pain. I went ahead and had surgery number two to remove the screws. Recovery from that was very easy and I was back on my feet in 2-3 weeks. Unfortunately, my pain did not go away completely. Later that summer I had more x-rays and an MRI and it showed nothing, but I knew there was something going on because my pain was terrible. I had an appointment with my orthopedic surgeon and general orthopedist together and they both agreed that I should proceed with a hip arthroscopy to explore what was going on and fix whatever was found. That Fall I had surgery 3. There were several things that my doctor found including a labral tear (even though it did not show up on the MRI), a bone cyst, a hole in my bone, synovitis, a bone spur that was poking through muscle, and impingement. Recovery for this surgery, despite the many things they found, was not near as bad as the PAO recovery. I was only on crutches for about five weeks after this surgery compared to well over two months after the PAO. There was obviously much pain involved, but still was not as bad as the PAO being that this surgery mostly dealt with tissue and things instead of the total reconstruction of my hip socket. I was able to go off to college that coming January because everything was looking good.
By late spring things were going very smoothly. My PT exercises were upgraded to jumping, running and other high-impact activities that I was restricted from for over two years. Unfortunately, by the time April came around a lot of my pain came back. My orthopedist thought it was tendonitis and bursitis, so he ordered intra-bursal cortisone shots, which are extremely painful shots that go straight into the joint capsule and bursa instead of just the muscle. After waiting a while again, it was obvious that they were not going to work and something else needed to be done. I had another MRI and a CT scan in later that summer because my orthopedist was not sure if the problem was dealing with bone or tissue. He ordered them stat because he knew I was leaving to go back to school for the Fall semester in two weeks. The CT scan showed a bone cyst and the MRI showed a spot that he thinks is either early osteoarthritis or where cartilage has rubbed down to bone.
He said if my pain was significant enough, then he could do another surgery to go in and take a look kind of like he did the past Fall. I decided that another surgery, though not an appealing option, would be best given the amount of pain I am in daily.
My journey with hip dysplasia is not over like I had hoped it would be by now, but the Lord continuously provides for me and is revealing Himself to me in ways that I never thought possible. During this process, He has constantly reminded me that He is sovereign and I am not. He knows what He is doing and this will work out for my good and His glory. For example, before all of this I had decided I wanted to be a physical therapist, and I do believe He is giving me every opportunity to experience how my patients are going to feel, so that I can have an extra amount of compassion for them. To all of you reading this who have hip dysplasia, please do not be discouraged! With Christ, we always have the victory!
KatelynHello everyone, my name is Katelyn. I am 17 years old and am currently a patient at Children’s Hospital. As you may have guessed from...
Hello everyone, my name is Katelyn. I am 17 years old and am currently a patient at Children’s Hospital. As you may have guessed from the website, I have been diagnosed with developmental hip dysplasia. It all started at the beginning of my 8th grade year. In this school year I was taking choir as one of my electives. In choir we were required to stand for the entire class period, to improve posture and breathing. As I stood, singing like everyone else, I felt my hips locking up. They became stiff after about 15 minutes of standing and became almost unbearable towards the end of the class period. This continued on and slowly started getting worse until the end of the school year. But it wasn’t until my freshman year of high school that I was diagnosed with hip dysplasia.
At the beginning of my freshman year I was also faced with a stomach condition called gastroparesis. Because of this my gallbladder was removed and I experienced several other medical procedures. These included things like exploratory scopes, CT scans, and two gastric emptying studies. With all of these issues going on I was also faced with the underlying issue that was my hips. As the first semester continued so did the pain. At one point I remember my hips and bones were almost grinding against each other. My mom was perplexed by the noise and questioned it, “Katelyn why is your stomach growling so loud?” She asked. I replied with the fact that it wasn’t my stomach at all, but rather my hips. It was then that we decided that this was a more serious issue than we thought. After going to two doctors and an orthopedic specialist I was finally diagnosed with hip dysplasia. Unfortunately, the orthopedic specialist did not feel that it was safe for them to operate. So, I was referred to the hip specialists at the Children’s Hospital. It was there that I met my orthopedist along with her assistants and medical team. After just one x-ray they officially diagnosed me with the condition. My left hip was moderate to severe, and my right was mild. I started physical therapy that spring and continued until my approaching surgery. On August 6th 2018, my left hip was operated on with the PAO surgery. After a 7 hour procedure I awoke to what seemed like a whole new world.
I remember when I woke up the first thing I asked was whether or not they have to make the other incision. The one that would’ve been in my thigh if need be. But luckily, they only made the one incision at the top of my hip. The next week was a blur. Nurses were in and out of my room. So were the specialists. I couldn’t eat. My hips were placed in odd positions I had never been in before. Everything seemed like a horrific mess. And before I knew it, it was time to go home. I honestly don’t remember much from that time. I think the amount of pain killers I was given made my memory fuzzy. After about a month and a half it was time to start physical therapy again. The first time I went into PT after surgery my physical therapist asked me to lift my leg up as much as I could. No matter how hard I tried I could not lift up my leg. When I got home I felt discouraged. “How is this possible?” “Will it always be like this?” I asked myself these questions ashamed of my inability to move. But this was completely normal. This was all part of the recovery process. Learning how to move and getting stronger every day. One thing I hated doing but really helped was walking. Just a little bit every day. My dad after having three back surgeries understood my struggle. He made me get up every morning and go out on the porch. We sat and had our coffee, rested for a bit, and then it was time to walk. Step by step I walked across the porch with my walker. Putting only 20% of my weight on the left side. My dad walked with me. We did this up and down a few times ranging anywhere from 2-5 times. And although I was angry at my dad for making me do this, it was one of the most helpful things in my recovery process. As time went on, I actually got excited to get on the porch. It felt good to move and to walk more and more like normal every day.
I continued physical therapy and eventually went back to school. I started at only two classes a day, and finally returned full time on the second semester of my sophomore year. Now, a year later starting my second semester of my junior year, I have come to realize I will need surgery again. We are currently in the process of getting MRI’s and scopes to find out whether I have labral tears in one or both hips. And are also preparing to do the same surgery as my left hip, the PAO, onto the right. Over the past two years from compensating and supporting my left hip, my right hip has gotten increasingly worse.
Overall, my experience with hip dysplasia has been more of a blessing than anything. I have learned so much these past few years and I am very thankful for so many things. I am thankful for my hip specialists’ and all the nurses who have taken care of me. For the learning experience about medicine and the medical field that this has brought me. And the humbling feeling of being the one in pain or who needs help. Before I had these medical issues I felt as if I was untouchable, now that I’ve gone through surgeries, medical procedures, a 9 month recovery and am now repeating that process I see the world a lot differently. My number one thing I’ve learned throughout this experience is how not to take things for granted. One day I was able to walk, the next I was limping. And after surgery I had to use a walker and crutches and wheelchair for about a month or two. It really puts you in your place and helps you be thankful for all that you do have.
I guess I will finish off with saying that for anyone who is going through hip dysplasia or any condition for that matter, I am praying for you. Please don’t worry, I know that things are scary right now, but it will get so much better. One day you will be able to walk and feel normal again. Your doctors and therapists will congratulate you and will cheer you on for the progress you have made. And I will also be cheering for you, like those who have cheered for me through this time.
KatieI’d like to share my story and share awareness. For the past 12 years I’ve been too uncomfortable with my scars and lost my confidence...
I’d like to share my story and share awareness. For the past 12 years I’ve been too uncomfortable with my scars and lost my confidence when I was aged 12. Over the last 12 years, I’ve had 4 operations and I’m only 16, and that’s all because of a doctor that didn’t go their job properly. As parents know, doctors are suppose to check your child’s hips and keep on checking them further through their life as a child. When my parents kept taking me and saying there was something wrong, my parents got told they were paranoid and I was just lazy and didn’t want to walk. My parents never gave up and kept taking me to the doctor demanding that there’s something wrong. Eventually when I turned age 4, my parents took me to a doctor that wasn’t my original doctor and he knew there was something wrong with me straight away and sent me to a hospital in Stoke-on-Trent. Doctors spent 8 hours operating on me, they broke my leg to remove some bone and put a metal plate and rods into my leg and I was in a full body cast for months. I couldn’t move unless people picked me up and moved me around, at age 4 I couldn’t even run around like all other kids could. Eventually, when I was taken out of a full body cast, I had another operation to remove the rods in my leg but the metal plate stayed in and they put me in a half cast and I had to learn to walk and run all over again. I eventually did it, it was hard believe me but I did it. I can’t go on really long walks as my leg aches and gives in. I don’t walk like many people do, my leg and foot are twisted and my hip isn’t a normal shape like the other one. Then in October 2018, aged 15, I had an injection operation at a hospital in Wolverhampton, where they injected something into the bone of my hip to see if the pain would go away as I was getting chronic pain. Unfortunately that didn’t help much. Then in March 2019, still aged 15, I had an operation to cut open my leg again to remove the metal plate that was in there for 11 and a half years. I spent a night in hospital and was on crutches for a week and luckily managed to start walking and running quickly again after about 2/3 weeks but it was hardest when I just come out of hospital as it took me ages to put clothes on, put socks and shoes on, take showers and go down or up the stairs. I went through hell. Yes I’m different, my hip is different to others and I walk different to others, but that doesn’t make me any less human. I’ve been bullied and had many nasty comments about myself but also had supportive and caring ones. People have got to realise scars are beautiful and they’re not unusual. Yes, I do admit, I do have my bad days, but then I remember… I have hip dysplasia and I’m a warrior for what I’ve been through and so is everybody else who has hip dysplasia. I would’ve only had to go through one small operation when a baby and then that would’ve been it but because I had a lazy doctor I’ve had to go through all this and will have to go through further operations and even a hip replacement. All I want to say is, to all parents, please please please make sure you and your doctor checks your child’s hips, I cannot stress it enough! You and your doctor could save your child having to go through what me and my family have had to go through. The pain, the suffering, the upset etc. I’m sharing my story out of confidence and sharing awareness because after 12, nearly 13 years, I’ve realised my importance, I’m only human and I’m strong for what I’ve been through! That takes a lot of guts for me to say. To everyone who has this condition I’m proud of you for who you are and what you’ve been through and remember, never forget your importance and your beautiful! Our scars are beautiful! Don’t be afraid to show them off! Thank you for taking your time to read this, it means the world to me. #hipdysplasia #congenitalhipdislocation #hipdysplasiaawareness 💓💙
KileyAs a parent the last thing you want to hear after your child is born is that something is wrong. I will never forget when...
As a parent the last thing you want to hear after your child is born is that something is wrong. I will never forget when our Doctor came in after our Daughter was born to tell us she had Hip Dysplasia. As new parents you are in shock. Our first reaction was is she in any pain and our next was educating ourselves about the disorder. Honestly we just didn’t want to believe it was true but after 2 different opinions and X-rays we had to face the facts of the long road of recovery ahead of us.
At 4 weeks she was put in a harness. The harness was a nightmare for us at first with clothing and car seats and outings but we made it work making special dresses and hoping she wasn’t uncomfortable. She wasn’t in pain but to us and everyone else that’s the first question they ask. Next at around 9 months she started to walk and we got the metal brace between her legs for a year but she was fast and determined and decided to start running next. Last came the calf and foot braces for the next 7 years. Everyday our Daughter just amazed us through all the therapy, X-rays, CT scans and Doctors she never let it stop her from crushing every obstacle in her way.
Today she is 14 years old. Her Hip Dysplasia is gone and her hips are perfect. She competed on several Select Soccer teams at a young age and Taekwondo. Eventually her love of Taekwondo Sparring took over around the age of 8 and she decided to continue her training seriously in Taekwondo. She is now working on her second degree Blackbelt and last year competed for Team USA as a Cadet in the Pan American Cadet/Junior Championships in Costa Rica and won the Silver for Team USA. She one of the top girls in her age group in the United States as a fighter. She also run Cross Country for her High School and is also one of the top girls in that sport.
I wanted to tell her story to give hope to all the other new parents out their getting the diagnosis for their child, I was you and know how your feeling. This disorder can be treated and corrected. It’s scary now but keep the faith your children can beat this and become the champions we know they are.
Wishing all health and healing. The Mehringer’s
LauraI was a baby when I was diagnosed with DDH. I had surgery when I was one so I don’t really remember anything about it....
I was a baby when I was diagnosed with DDH. I had surgery when I was one so I don’t really remember anything about it. My mom said that without that surgery I would be confined to a wheelchair my entire life and I would not be able to walk. Now I am almost 19 years old. I have to have a hip replacement surgery in the near future and it is very scary for me. When I was younger, the doctors were trying to put screws in my hip so that I would not need the hip replacement surgery. For some reason, the way that I was growing the screws would not help me.
I always remember having to go to the doctor and crying because I hated going to the doctor. But hey, I got pretty good at doing x-rays. I was always so upset because all my friends didn’t have to go to the doctor and get x-rays. It made me feel like there was something wrong with me. Of course, there was.
I distinctly remember crying in the waiting room one time when I was little with my mom. My mom had several miscarriages before she had me, and I still had something wrong with me. I remember crying saying that I wish I were never born (dramatic, I know, but I was young). All because I had to go to the doctor.
I still loathe going to the doctor, but I have to go less frequently now. It does get better. I don’t have any pain in my hip, I just know that it is out of place. My right leg is about 1-2 inches shorter than my left leg. I have a limp, but it doesn’t stop me from dancing!
LaurenHi! My name is Lauren, I’m 18 and I’m from Scotland, UK. I was diagnosed with hip dysplasia when I was born. In the UK,...
My name is Lauren, I’m 18 and I’m from Scotland, UK. I was diagnosed with hip dysplasia when I was born. In the UK, the health system is very different.
When I was born, doctors told my mum that I would be okay and I would grow out of it. My hip joints at this point were not completely formed meaning my legs were stuck in the air all the time! Over time, my joints formed and I was a normal happy child. It wasn’t until I was around 12 years old that they really began to hurt.
At primary school, I loved running and was a keen cross country runner. When I started to feel the pain, I had to stop. I visited my GP and they just gave me painkillers. This didn’t help at all and I couldn’t climb upstairs at all. I spent a lot of time in bed as I couldn’t move. I visited again and was giving physiotherapy. The physio made the pain a lot worse and by this point, my hips were starting to dislocate and wear away the tendons in my legs. I was referred to a child orthopedic who said they cannot do anything for me until I have grown fully.
Six years on, I have been given five rounds of physiotherapy, a round of hydrotherapy and ultrasound therapy as well as countless prescription drugs. I am constantly at my GP but they refuse to send me to a specialist. It is affecting me daily and the pain in my hips has moved into my back and my knees which is really quite horrific. I now use crutches most days to get around. I joined my local gym to try and keep myself active and healthy but as I can’t do any cardio, it is a real pain. I spend most of my time on weights but even the weights are a painful ordeal.
I found this website today and I love it. It’s great to see everyone helping each other as here in the UK, I don’t know anyone else with this condition. I’m stuck in a rut with my GP, but my advice to anyone who’s child has hip dysplasia is to keep on at doctors etc and get it sorted while they are young. If my doctor had done his job properly, I would not be in this position.
MaddieMy journey with Hip Dysplasia started in August 2017. It was softball season and everytime I ran my right hip would be throbbing with pain....
My journey with Hip Dysplasia started in August 2017. It was softball season and everytime I ran my right hip would be throbbing with pain. Also whenever I would sit down or stand up my hips would pop. I tried ice and heat to make the pain go away. My mom took me to my primary doctor and she didn’t know what was wrong. I was given a paper with orthopedic specialists in my area. I went to the specialist and she said that ligaments were just hooking onto my femur bone and physical therapy would solve the issue. About 4 weeks go by and the pain wasn’t going away. I was referred to another physician who knew more about the hip and could figure out why I was in so much pain. I had an MRI with contrast done and there it was. A torn labrum. That’s when I was told that I had hip dysplasia. I was so in shock that it was worse than I thought it would be. Then I was told about the PAO surgery. I now went to go see another orthopedic physician who specialized in hip dysplasia. He said that a PAO would help me from having to get a hip replacement for a long time. On February 23, 2018 I had a PAO and labrum repair surgery.
I stayed the weekend in the hospital. The first time standing up out of bed is the worst part of it all. The first week was rough but by the 2nd week I was off the pain meds and starting to do more things on my own.
At my 1 month post op appointment with the orthopedic specialist who said that I was healing fast and I could get wean off the crutches and it would take about 2-3 weeks! I am now about to 6 weeks post op.
I forgot to add that I joined the PAO support group on facebook and asked questions and feedback from people who have had the surgery! Joining a support group on social media or following blogs is a great way to find out more information from people going through hip dysplasia too!
Maggie-April’s StoryHi my name is Maggie-April and I was born with severe bilateral hip dysplasia (DDH). I was born and a few days later I was...
Hi my name is Maggie-April and I was born with severe bilateral hip dysplasia (DDH). I was born and a few days later I was adopted but with no awareness of what was to come. I was a totally normal smiling, laughing and happy baby for a year until I started walking. I had a limp and a roll to my walk. My mom brought me to the doctor numerous times but they kept saying that the reason that I had a limp was cause I just started walking. When I was two my mom ordered the doctors to refer me to a pediatrician. My doctor said that they would take an x-ray then see if anything was wrong…That night the doctor called and was clearly shaken, she sent my family and I strait to the Children’s Hospital.
My continuous journey started when the doctors at the Children’s hospital diagnosed me with severe bilateral hip dysplasia. They explained what DDH was and that my x-ray and CT scan showed that I had almost no hips at all. That day the doctors and nurses scheduled me for first surgery that would be in a couple of months.
Between the age of two and five I had had five surgeries and about six different Spica Casts for months at a time.
At the age of five I was all fixed and could do anything I wanted. I went back for check-ups every year.
At one of my regular check-ups when I was ten they sent me to get an MRI. My parents knew something was wrong but kept it to themselves. After looking at my MRI my doctors decided that my left hip was slowly dislocating and they would have to fix it with more surgery. I underwent 3 more surgery which included a HUGE Spica cast and very annoying leg difference. My sixth surgery left me with a leg difference of four centimeters. I had to wear a lift on the bottom of my shoe, the lift attract lots of questions and bullies. The lift also limited me only two pairs of shoes over a year and a bit.
I was all done with surgeries, or so we thought until this last April where I underwent my 9th surgery on my right leg. I am still recovering, but am happy that they did this surgery. This surgery has made life easier by fixing the leg difference, they took four centimeters out of my right hip. I now have 5 pairs of shoes and am excited to recover to the fullest!
In my future I will have one surgery next year and hip replacements in my thirties but, I like to live life in the moment and not worry about the future!
I am currently 13 years old and have overcome nine surgeries on my hips. I am very active and love to play all kinds of sports, nothing can stop me and my hips!
Marie’s StoryI was 14 when I was first diagnosed with Hip Dysplasia. The year was 2007. At the age of 14 I was a national level...
I was 14 when I was first diagnosed with Hip Dysplasia. The year was 2007.
At the age of 14 I was a national level gymnast. I know I always happened to have hips that were more flexible than most, but I did not think anything of it.
I had a bad fall in gymnastics on April 26th 2006 and I will never forget that day. I fell from the trampoline and the fall was not a really bad one I just landed very awkwardly on my leg. My coach and my mother realized something was terribly wrong when I hesitated to get up. ( I am one to get right up after a fall)
At that moment I still did not know what was awaiting me as I half lay/sat there for a moment. Finally I told myself “ok Marie now stand up”. I felt the most incredibly life altering pain that I have ever felt in my life. My hip seem not able to bear my weight and it was so painful.
I was rushed to the emergency room. When I got there they gave me an injectable medication in my hip to reduce the pain. The X-ray did not show anything. I probably tore a muscle and so I was given crutches and sent home.
I was in crutches for 2 months. I kept complaining about having pain.It was very real to me that being but everyone around me seem to think I was seeking attention, as the doctors could not find anything wrong.
I remember feeling dismissed and so alone. My coach was displeased with me because I would go to training and could not perform to what was expected. My parents were concerned but at the same time were being told by the so called professionals that I was fine. It was a very long heartbreaking 3 months for me.
On my next checkup with the doc I told him “no one believes me you have put everyone against me and I am only 14 if you really care please help me I am in a lot of pain”. The doc then told my mom that he would schedule an MRI and in the meantime, I would start intensive physiotherapy.
My physiotherapist was the most amazing and compassionate woman I had ever met. She really helped me. I told her about the events leading up to my physiotherapy as well as what felt good and what didn’t. She asked me what does the pain feel like or what it remind me of. I explained that sometimes I would sit and cross my legs and I would feel a crack and a jolt of pain would go through my hip. The pain would linger there for awhile after it happened and for the most part the pain was dull and achy.
She said “at the top of your head tell me exactly what hurts and really listen to your body”. I said “Dominique my bones hurt”.
She said that for someone who had never broken a bone in their life to be able to say that your bones hurt that there must be a serious issue.
I got the results of the MRI and the physiotherapist met my parents and I to see the orthopaedic surgeon. We saw (all in the same hospital) the doc and he said that the results were negative, everything looked fine. My physiotherapist pushed for him to do something more and told him what I had told her. We were referred to an adult specialist. All the while, still in intensive physiotherapy.
Finally on March 11th 2007 we saw the specialist. He asked what were my complaints and I told him. He pulled up the X-ray and looked at them (the same one everyone else has been looking at) and said it looks like you have major issues. My mother,Marie, of course started to panic.
He looked at the MRI and turned to me. “You must be an amazing athlete and have great pain tolerance because most people, if they were in your situation, would hardly be able to walk” he said.
He explained that he never performed this type of extensive surgery on someone my age. The particular problems were pertinent to my hip dysplasia and the additional damage due to overuse and my fall in 2006.
He said that I would need surgery; Pelvic Osteotomy and hip Arthroplasty on my left side. He said we would leave the right hip alone as it was not bad and in the future if I ever had deterioration of the cartilage on the right side we would do a Arthroscopy.
On July 17th 2007 (my birthday), the phone rang and I assumed it may be more birthday wishes. My dad was at a meeting and my mom was at to the grocery store. It was no birthday wish. It was the hospital calling to tell me that the doctor was ready to perform surgery on my hip and that I would have a pre op on August 15 and the surgery on the 21st. She ended the call with a “happy birthday”. Mom walked in shortly after and asked why I looked like I just saw a ghost. I explained to her the situation and she said it would be ok, we would get through it together.
As scheduled we went in for the pre op and a few days later got the surgery. I was given a epidural on top of all the other things they gave me to ensure that I had good pain management afterward. I was in the hospital for 16 days and on crutches for 4 months. I learned I take my first steps with my physiotherapist Dominique.
It was a long and painful recovery and after many tears shed, and a scar of 29.6 cm, I am doing great. Plus I now have 3 pins in my hip. I was not able to go back into gymnastics at the same level but it does not stop me from still participating.
The pain is gone but some days, depending on the weather and how much exercise I’ve done, I need to rest as my hip gets very sore.
Anyhow, all this my story and I am happy I have shared it.
MeganI was always an active kid. I loved softball and always dreamed of pursuing it in high school and eventually college. But when I was...
I was always an active kid. I loved softball and always dreamed of pursuing it in high school and eventually college. But when I was about 12 years old I started having hip pain and clicking in both of my hips. After two years, and at the age of 14, I was diagnosed with torn labrums and impingement in both hips. I underwent my first arthroscopic procedure on my right hip in April of 2014. That surgery was a success for sure. Because of the success of the surgery on my right hip, we decided to go forward with the arthroscopic procedure on my left hip. Once the surgery started the surgeon determined I didn’t have a torn labrum and justhe cleaned out my joint and shaved off the extra bone (impingement.) So I was recovering well until one day I bent down to pick up a little dog and my hip dislocated. I was rushed to the E.R. where they popped it back in place. We were told that everything should heal and that it shouldn’t pop out again. After that first dislocation my hip never felt the same. It always felt as though it was going to pop out again and eventually it did. So I was once again rushed to the E.R. where they popped it back in. So I ended up getting another surgery but this time it was pretty major. I now have a 6 inch scar. Even though I had my surgery in October of last year, my left hip has still felt unstable or like it’s going to pop out. So we got a second opinion and I was diagnosed with hip dysplasia on the left side. The angle that they take is normally in the mid 20’s. My angle was 12 degrees. Does anyone know if that will require the PAO surgery? Is anyone willing to share their experience with the PAO surgery? Is it worth it? How have you felt since?
MeganHello everyone, my name is Megan and this is my hip dysplasia journey so far! Having everything taken away from you at a young age...
Hello everyone, my name is Megan and this is my hip dysplasia journey so far!
Having everything taken away from you at a young age is heartbreaking. I started having hip pain around the age of 12 and it’s as if my whole life was put on hold. I had to quit softball and could hardly run the mile in middle school. We went to a few doctors who said I had growing pains and if the pain persisted for a few more years, then I should come back. Years? My pain gradually got worse and eventually, it got to the point where I could no longer run anymore and even had a hard time walking.
When I was 14 years old I was diagnosed with a torn labrum and impingement in both hips. It was frustrating but at the same time, it was a relief. I had an answer to my pain and there was a simple plan to fix my hips, or so we thought. I had my first surgery at age 14, as a freshman in high school. It was arthroscopic, in other words, less invasive than an open surgery. I was fully recovered within a year but unfortunately started having pain in the other hip.
We went back to the doctor who recommended another arthroscopic surgery. We were pleased with the results of my right hip and went ahead with surgery on the left hip when I was 15, now a sophomore in high school. Recovery went well and I thought I was back to 100%. Little did I know the things that would happen next.
A few months after the arthroscopic surgery on my left hip, my hip fully dislocated. I was rushed by ambulance to a local hospital where I was told my hip had anteriorly dislocated and that it needed to be popped back in place. After this was done, we looked for answers. Why had my hip dislocated in the first place? It was the most traumatic experience ever and the pain was indescribable. We went back to my scope surgeon who reassured us that I was fine and that it wouldn’t happen again. A few months later, after a lot of physical therapy, my hip dislocated again. I was so upset and frustrated. Again? I needed answers.
We researched what could be causing my dislocations and came across hip dysplasia. In the meantime, I had an open surgical dislocation surgery with the scope surgeon where he fixed all the damage that the dislocations had caused. I had many torn ligaments, muscles, and a fracture.
After months of rehab from the open surgical dislocation surgery, I knew something still wasn’t right with my hip. It felt unstable. We pursued the hip dysplasia diagnosis with other doctors and I was eventually diagnosed. I then had to make the decision whether or not to have the PAO. I wanted my life back and so I underwent my PAO in May of 2016. I am by no means 100% pain-free, but my hip is stable and that is huge. I am forever grateful for the stories on this site, you guys helped me tremendously.
There are gaps in my story but that is okay. I did physical therapy for years and tried injections, anything to avoid more surgery. Sometimes though, sacrifices have to be made in order for things to fully work out in the end. Good luck to everyone on this crazy journey, it does get better!!!
Mikayla’s StoryHello to everyone who is reading this,My names Mikayla and I’m 12 years old. I’m in year 7 and love singing and photography, I also...
Hello to everyone who is reading this,
My names Mikayla and I’m 12 years old. I’m in year 7 and love singing and photography, I also used to play a lot of basketball and had played a few games of netball. I was diagnosed with Developmental Hip Dysplasia in 2012 when I was 10. I had just come out of basketball training and had cross country the next day, my hip had been a bit sore lately but because I have always been tall we just thought it was growing pains. I asked mum if I could go for a run around and oval, so she let me go. I got half way around the oval when my leg went from under me and I fell. Mum came rushing over carrying my, at the time, 3 year old sister. She helped me get to the car and then we went straight to my local doctors. He sent me to the hospital saying that it was urgent, I was now in a lot of pain.
I got a x-ray and 4 weeks later I met with my surgeon. He told me I had severe hip dysplasia and a massive tear in my cartilage. I had a Triple Pelvic Osteotomy and then started to do all of my rehab. Everything was going well and then I had my checkup. My surgeon told me that my femurs were to angled inward and that I would need a Bilateral Femoral Osteotomy. This was the worst surgery I’ve had, both of my legs felt like blobs and I had to learn to walk again which was very painful.
Through both of these surgeries I was having nerve spasms and doctors also picked up through a M.R.I that I have kidney issues which means I can not take anti-inflamitories. I would do some rehab and increase my work load and then I would have a horiffic spasm and I couldn’t walk for a full day. 9 months after my 2nd surgery I had all of the plates and screws removed. I was again doing all of my rehab and was even just about to start running again! I had just gone on my first high school camp and was joining in on P.E lessons.
I started getting pain again and felt that something was wrong. I was getting aches and sharp pain. Mum and dad also knew that something was off so mum drove me into the emergency room. I had and x-ray done and then, again, met with my surgeon. He told me I had torn my cartliage again and had rebound dysplasia (where the hip surgery undoes it’s self or the dysplasia comes back.) So just over 3 weeks ago I underwent a Periacetabular Osteotomy. It’s all going well and I’m glad I got it done. I have down days but my dads jokes, mums cooking and my little sisters cheeky personality keep me going with a smile on my face.
MilesAbout two years ago, my 17 year old son started experiencing moderate to severe discomfort in his right hip. He was a lacrosse player and...
About two years ago, my 17 year old son started experiencing moderate to severe discomfort in his right hip. He was a lacrosse player and the pain seemed to be triggered by long practices with lots of running over hard ground. We tried all the normal things at first including; ice and heat, ibuprofen and just grin and bear it, but the pain seemed to get progressively worse.
When he started limping and missed a few games, we knew that we had to do something. Our fist stop was the pediatrician. He didn’t know exactly what was wrong, but recommended that we see a sports medicine doctor. This guy took some X-rays and suggested that Miles may be suffering from hip dysplasia. How can this be? I thought hip dysplasia was a condition only found in German Shepherds and Golden Retrievers.
I immediately got on the internet and began to research. I was surprised to learn that this condition was exceedingly common. By some estimates, it effects as many as 1 in 20. Before too long, I came across the IHDI website. I will be eternally grateful for the information and resources provided by this organization. I was able to educate myself on hip dysplasia, read actual patient stories and find a list of physicians who specialize in this condition.
To my surprise and delight, we are very close, only about 2.5 hours drive, from a hip dysplasia expert. We made an appointment to see the orthopedist.
From the moment we checked in, we knew we were in the right place. The receptionists, nurses and X-ray technicians put us at ease and the orthopedist was amazing. He exuded charm, confidence and empathy. Even though he was recommending major surgery, with a long and painful recovery, we felt confident that this was something that could be fixed and we were in good hands.
About 3 weeks ago, Miles underwent the PAO procedure. The operation took about 10 hours because he needed labrum repair too. It was nerve wracking and stressful, but the frequent updates through the EASE App made it much better. The orthopedist met with us immediately after the surgery to answer our questions and let us know that everything went according to plan and we could expect very good results.
Post op, we spent about 4 days at the hospital. I can’t say enough good things about the nurses and support staff. They are unsung heroes who watched over my son day and night. The care and expertise they provided was exceptional. They even set up a bed in the hospital room so my wife and I could be by his side at all times.
Hip dysplasia sucks, but we are so thankful and blessed for the help we received along the path. In particular, we appreciate the dedicated doctors and nurses, the IHDI, the Whitney family and everyone who supports the IHDI Mission. If sharing our story helps even one person who is suffering from this condition, then that, for me, will have been a big accomplishment.
NaomiHi my name is Naomi and I am 16. I was diagnosed with bilateral Hip Dysplasia at birth but I was also born premature so...
Hi my name is Naomi and I am 16. I was diagnosed with bilateral Hip Dysplasia at birth but I was also born premature so that made the disability harder to correct. None of the treatments worked and so now I live with this everyday. I have had three surgeries, all before I was three. one left me in double leg casts up to my hips which caused me to pull myself around the house. I have very limited range of motion, this means I cannot ride a bike or cross my legs. My parents were lost with what to do, we’ve tried almost everything. I have learned that heat helps and pain relief pills have a limited ability to help.
Last year I was given the opportunity to try Steroid shots, four in each hip, which worked for a month instead of six. I want to share my story because I wish I could talk to someone who understood the pain I have and I hope people benefit from reading what I have been through. One week ago I took trip to another hospital to see a doctor about double hip replacement surgery, I wanted my pain to go away. The doctor told me that a surgery would make everything worse. He told me that I had to loose weight because there is too much weight being put on the muscles that my hip bones are attached to. I have been to about five doctors and every single one has told me that surgery was my only hope.
I want to share this because I want my pain gone and hearing that surgery was not in the picture for me at the moment, broke my heart. I don’t want to let anyone else get their hopes up like I did because we all deserve to be told the truth no matter what. I have wished that I had a friend who knew how to act around me when I was in pain. I wish I could do more. I have this list of what I want to do after surgery, now it seems trivial to keep. I have kept this to myself for a very long time. Now I feel like I should tell this now because kids are cruel.
As time progresses, nothing was getting better and kids were noticing more. one of my friends told me that he heard a girl, who is known for her rude comments, tell another that I don’t know how to walk. As most of you know because of our disability, most walk with a “waddle”. a few months ago, a transgender boy told me that I don’t know what its like because I am a white girl, I don’t know that it means to be different. I tried to explain but was told that it was a race issue and other factors didn’t matter. when things like this happen I feel so lost and alone. I wish people were nicer. Even teachers who don’t know me have tried to take away my key to the schools elevator, my school has 11 floors, including subbasements and additions.
I want this story to help people who may feel about at lost as I do. I want to see comments and all I want is to be normal. I know that this is an impossible task, but I can hope. All we can ever do is hope and I don’t know about anyone else, I don’t want to be considered an inspiration. If I’ve said it once ill say it again, I want to be normal.
NatalieMy story begins on November 8, 2002. My name is Natalie Schulze, and I was a “normal” baby: I had a normal set of heart...
My story begins on November 8, 2002. My name is Natalie Schulze, and I was a “normal” baby: I had a normal set of heart and lungs, normal fingers and toes, normal birthweight- the whole nine yards. Or so I thought. After a healthy, successful delivery, my parents were ready to take me home and show me the world.
The first year of my life went seemingly smooth. Picking my head up, sitting independently, and accomplishing simple infantile stepping stones failed to worry my parents, as they truly believed I was a happy and healthy baby. When I turned three, however, my life began to change for the worse. I began preschool that year, and one day after school, my teacher, with a concerned countenance, quickly approached my mother and told her she had noticed my unique gait. She quickly made the observation that I was walking completely different compared to the other preschoolers. Both my teacher and my mother took a closer look, and they witnessed a waddling motion back and forth every time I took a step. Horrified, my mom immediately notified my father, and they both took me to the hospital to assess and diagnose my bizarre gait. My family and I met with the head surgeon of the hospital’s orthopedic department. I walked back and forth in the exam room, pointed my toes out, and completed the “duck walk”. I then laid down on the exam table as the surgeon moved my entire left leg in a circular motion and felt the way my restricted ball-and-socket joint moved when my leg was in all different positions. My leg was brought towards and away from my chest, left and right, up and down, as it was attempting to complete the ball-and-socket joint’s full range-of-motion. After careful observation, he realized that my left leg was noticeably longer than my right leg, and I was sent to get x-rays done of my left leg and hip for further diagnosis. The x-rays were undoubtedly obvious: the socket of my hip joint did not fully encapsulate the ball part of the joint. The options were discussed to treat this condition, and my doctor and parents together concluded that surgery would be the best option.
A few weeks later, in December of 2005, I was in rolled into the operating room for a five-hour surgery. The ball of my femur was to be moved so it would now be full-intact and encircled by socket joint. Coming out of the surgery and slowly waking up to the sound of crying, I slowly opened my eyes and saw tears streaming down my parents’ face. I was completely terrified. I looked down and suddenly found myself in a full-body cast. I cried and cried. The cast started at my manubrium line, wrapped around the circumference of my torso, leaving both of my arms to move freely. It continued all the way down to my left ankle and my right mid-thigh, tightly wrapped around my body. I obviously couldn’t walk by any means, so I used a wheelchair to move around.
On another note, I had been potty trained for about a year or so before leading up to my major surgery. However, those skills went completely down the drain as my doctor needed to drill a hole through my cast in my genital area, permitting my parents to shove in diapers. I had to tell them whenever I “went potty” so they could take my diaper out and replace it so the cast wouldn’t mold in itself. I still went to preschool with my full-body cast, but while other three-year-olds in my class were able to go to the bathroom by themselves whenever they wanted, completely potty trained, I was fully dependent on my teacher. I began realizing that I was not like my other classmates. I wanted some form of independence- some liberation from my dysplasia that forbade me from developing like everyone else.
Moreover, the cast couldn’t get wet, so showering wasn’t even a possibility. Pardon my hygiene, but there was no possible way I could wash my body without getting my cast wet. The only part of my body I was able to wash was my face and my hair, so every Saturday, my father would take me to our local children’s hair salon. I vividly recall being transferred from my wheelchair to a large table so my hair could be washed by stylist. Although there were painful hardships I had to endure in the short period of time with my cast on, I also remember enjoying certain parts of it, such as getting my hair done, because the stylist delicately intertwined ribbons, flowers, and glitter into my curly blonde hair. Conveying my inner “girly-girl” was definitely a challenge because I couldn’t fit into my pink and purple dresses and skirts over my cast, but seeing my hair done professionally made me channel my true girliness.
To move from place to place, when I wasn’t in my wheelchair, my parents would pull me in a red Radio Flyer wagon that every child owns to wheel their toys around- I was instead using it for an entirely different purpose. For lengthier distances, we had a Nissan Altima, but it could not suit a toddler with her full-body cast and her wheelchair appropriately. We had absolutely no idea how we were going to travel around with our circumstances. We resorted to exchanging cars with our neighbors, because they had a large minivan that could fit my wheelchair in properly. My mother spent her days researching how to safely strap wheelchairs in cars, and she bought a harness to strap the wheelchair to the interior of the car. Thus, regardless if my parents slammed on the brakes, I would be safe in the car. After we figured out the transportation situation, my family finally began adjusting to our new life. We settled into our new routine, which consisted of going to preschool every day, crippled, while my mother had to take care of my six-month-old little sister at home and my father was at work all day. During the weekends, my family would take a walk around Poway Lake. I’ll never forget the moments where my mother rolled my little sister in her stroller while my father pulled me on my Radio Flyer wagon. That image vividly sticks with me today, as I continue to realize the unremitting and unconditional love my family has for each other, even through difficult times in our lives.
Three very long months later, my full-body cast finally came off, and there was an indescribable sense of relief in my family. Fortunately, my surgeon said my full-body cast and my surgery fixed everything. As the cast came off, I discovered an incredibly noticeable six-inch scar running down the lateral side of my left leg. The new, red, raw, and fleshy scar made me nervous because I didn’t want others to judge me and make false assumptions about my competence solely based on my scar. Moreover, my new tan lines stuck out like a sore thumb, and I recall staring at my pale, hairless legs and comparing them to my tan arms. I had completely forgotten what my legs had looked like. It was finally time to try and walk again- something I really took for granted before my dysplasia- and it felt completely foreign. My family still needed to assist me for weeks after my cast came off, but I felt a new sense of independence that I didn’t have for the three months I had my cast on.
After about a year of living a normal life following my surgery and my cast, I could now walk on my own again and I also began soccer and dance. I would regularly visit the hospital to check-up on my hip, but one day, my surgeon notified my parents and asked them to bring me into his office. Confused, we headed to the hospital, and my surgeon revealed that he wanted to perform a second surgery on me. He wanted to view my ball-and-socket joint from another angle (medial as opposed to lateral) to make sure everything was still in place after one year of walking and actively moving. Indeed, my second surgery wasn’t as nerve-wracking, mainly because it was to be shorter as well as minimally invasive compared to my first surgery. Sure enough, a short three hours later, everything went well just as my doctor had hoped. The room was filled with silence as I slowly woke up and came in touch with the environment around me. I suddenly noticed two six-inch scars on my upper left leg, but thankfully, there was no cast on me and no tears flowing down my parents’ face this time. Unlike my first surgery, I was allowed to do whatever I wanted coming out of it, so my first impulse was to eat something. I ordered ice cream just about every hour in the hospital, and my parents complied with my decisions. I think this was the time in my life where I truly discovered my favorite food, ice cream, as it remains my favorite food to this day. Post-surgery ice cream as well as my new battle scars were by far the best part of the whole experience. I proudly show off my three scars now, because they are what make me unique. Although this journey was an intimate and personal experience alone, the unconditional love that my family embraced and expressed towards each other during this time reflect our close bond today. I am utterly thankful for their everlasting support, and I am so grateful to receive an incredible treatment for my condition.
Post-surgery life was comprised of a trial-and-error process to make sure my hip did not regress back into its original condition while completing mundane tasks and physical exercise. We were thoroughly warned before and after my second surgery that these operations do not guarantee a permanent change; many people’s ball-and-socket joints relapse into its original position, so they need surgery to reposition the ball back into its place. I completed two years of physical therapy to strengthen the muscles around the hip area. I remember crying out in excruciating pain, unable to comprehend why my inguinal area was experiencing extreme agony. I couldn’t do physical therapy for the rest of my life, so I needed to find a sport that would best suit my condition. I was prohibited from high impact sports, meaning that any form of running and jumping was out of the question. My doctor recommended swimming- it was a low-impact sport that places an emphasis on cardio and building muscular strength. I complied and joined a local swim team, an extension of the swim school where I had my swimming lessons. I enjoyed lessons when I was younger, but I never imagined that I would participate in swimming as a competitive sport. I joined when I was nine, with an open mind but I had no idea what to expect. At first, I absolutely hated it. I couldn’t plunge myself into the pool, jump off the diving board, or splash around like I could prior to my dysplasia. I cried before going to my swim practices, I didn’t have any friends on the team, and I still had intense hip pain. Nonetheless, my parents pushed and pushed me to continue the sport until I began enjoying it. Not long after, I met fellow swimmers who also went to my elementary school and made friends with them. Now, instead of bawling my eyes out before practices, I asked to go to swim practices. I begged, then cried when I couldn’t go to practice, and before I knew it, my hip began to heal.
It stopped hurting, and I knew that I had found my permanent remedy. With every new day, I loved swimming more and more, and with my passion and determination, I drastically improved my race times during swim competitions. Competitive swimming took up six days a week, two to three hours a day, and even some days, at 5:00 a.m. This sport was now my way of life, and I didn’t want to imagine what my life would be like without it. It quickly became an integral part of my life, and healing my hip was now a minor part of why I loved swimming so much. I continued with swimming because I simply loved and enjoyed it, and healing my hip was a bonus.
I’m incredibly grateful to have created everlasting friendships with my supportive and kind teammates. Aside from the social aspect that the sport offered, I’m proud of my accomplishments: I’m a twelve-time sectionals qualifier, first-tier junior national qualifier, and a member on my high school’s varsity swim team for the last two years. I now teach swimming lessons to people of all ages, regardless of their backgrounds or whether they have disabilities or not. Like my journey, I hope others similar to my condition can devote themselves to something they love. Swimming began as a way to relieve my pain, but it has now become so much more. I not only swim competitively, but I enjoy giving back my time and effort to be a part of someone’s journey, regardless of whether I know what they are going through or not. The emotional, mental, and physical pain that swim has relieved is incredible, and I am so thankful for everyone and everything that this sport has given me.
I refuse to allow my limitations to hinder my ambitions and define who I truly am. I am not only a functioning human being, but I am also a flourishing individual who overcame childhood adversity. The legacy that I will create for myself comprises of the tasks I must accomplish, the challenges I will continue to conquer, and the dreams I aspire to pursue my own happiness. I am more than just my condition. Rather, I believe that my accomplishments, challenges, and dreams define who I truly am.
NatalieLife before my hip dysplasia diagnosis After putting my first pair of dance shoes on at the age of 3, performing became a significant part...
Life before my hip dysplasia diagnosis
After putting my first pair of dance shoes on at the age of 3, performing became a significant part of my life for nearly 17 years. My dance school (Diane Bradbury Theatre Dance School) was my second home and I was there nearly every day, after school and over the weekends. Dancing came naturally to me partly due to my joints being very flexible and hyper-mobile, especially my right hip and leg. I never experienced any pain or problems with my hip until I was having intense one to one dance lessons as preparation for my university auditions at the age of 18. My dance teachers noticed I was lifting my right hip as I was kicking, so I tried to do this keeping my hip down, and as a result started to get a twinge and pain inside my hip. In order to rest and recuperate and to save myself for my upcoming auditions taking place in the following month, I did not dance for 6 weeks. Over the next 8 months, I completed all my auditions as well as my final dance show with the dance school I had been with for 15 years and had no pain or problems. The day I found out I had been offered a place at Guildford School of Acting on the Actor Musicianship course I was full of emotions; I could not believe I had achieved this great honour and although I was nervous, I was excited to start my journey.
I began my course at the end of September 2017, danced for 2 weeks and have not danced since. Again, the dance teachers noticed my right hip was rising during my kicks. After a few adaptations and advice on how to correct my technique, I felt an awful tearing pain inside my hip, and this is when the initial horror all began…
The start of my investigative journey began by seeing an osteopath who was visiting the university. He was unsure of the problem and thought I would need to have a steroid injection in the near future to assist the pain. Hearing this drastic statement so soon after the pain began worried me significantly and so I wanted to get a second opinion. During an appointment with a GP, I managed to get a referral to the musculoskeletal clinic at the Surrey Hospital but there was a long waiting time for the appointment. My mum suggested finding a chiropractor in Guildford due to her positive experiences of them in the past. Upon seeing the chiropractor, he manipulated my back and hip without having any investigation or x-ray done. I trusted him and he claimed he could help me get back to dancing within a few months. Because I was worried about my hip, I allowed him to make the adjustments he suggested. These adjustments gave me no relief and afterwards, I was in much more pain than before. Unfortunately, the chiropractor informed me that I would not be able to get an MRI scan through the NHS. So he suggested paying for a private MRI scan clinic in London which he recommended, and he instantly referred me to them. My first MRI scan was of the front of my hip joint as that is where all my pain initially was. Due to the results coming back as clear, I had another MRI scan of my lumbar spine – the chiropractor believed the problem was originated there, but that the pain was being transferred to my hip. The results for this scan came back as partial scoliosis which was a big surprise to me as I had no problems with my back.
My appointment at the Hospital finally came through for the 15th December, on my last day of term at university before Christmas. I had x-rays completed as preparation for before this appointment and saw the specialist’s assistant. She believed that I had a labral tear in my right hip and needed an urgent arthroscopy (MRI scan with a purple dye added to enhance the image). She also said that she thought that I may need keyhole surgery in the future if the scan did detect a labral tear. In February 2018, I finally saw the specialist doctor who wasn’t sure if I had a labral tear and refused to do any surgery on me, being unsure of the problem and not wanting to affect my dancing career. I had a steroid injection in my hip joint to see if it helped my hip pain. Unfortunately, the injection made my pain worse for several weeks before the pain levels returned back to their original level. The doctor discharged me as he could not help me any further. For the next month, I had physiotherapy at the hospital, to help relax the muscles in my leg and round my hip as she believed this would help my hip pain. I started feeling lost and left behind because I wasn’t moving forward or finding a solution. I messaged my great aunty who was in contact with a soft tissue specialist and physio who used to treat Jessica Ennis and managed to get me an appointment with him during my Easter holidays at home. He treated my legs and back and believed that the muscles were just too tight around my hip and that he didn’t think there was a serious problem. He told me to do some exercises to release muscle tension and that I would be able to dance again very soon.
On my train journey back home for Easter, I researched dance injury specialists and physios. This new one was through the NHS and dance institution and she worked for the Olympic Hockey Team. Luckily, I was able to get my GP at home to refer me and I got an appointment at the end of the Easter holidays just before I went back to Guildford. This appointment was the day after I’d seen another physician, so I could use it to compare what they believed would be best for me. The initial appointment was brilliant, and I felt so relieved that I’d found someone who could help. She did a full investigation into all my medical history, looked at all the scans of my hips and back and a performed a physical examination. The new physician believed the problems were present in the left side of my back and in the angle of my right foot which was pushing my right hip out of place. I travelled to Birmingham by train from Guildford, every other Wednesday afternoon for a 45 minute session with her. She used a metal appliance to manipulate my back and foot rather than using her hands as this got deeper into the muscle tissue. She also used sports tape to pull my right foot outwards which helped to relieve some of my hip pain. Every appointment I came out feeling incredibly sore and the long journey did not help with recovery. The next day I always had to miss Uni because I couldn’t move with the pain in my back, hip and legs and was covered in deep black and blue bruises. After having 4/5 appointments with her, I was starting to lose any positivity mentally and physically because I knew deep down there was a problem with my hip, and I needed to see someone who could actually understand and listen to me.
Going in for my hip dysplasia operation
I found a hip group on Facebook and asked if anyone could recommend a hip specialist for me and every single person said the same name. Through this page I started talking to many others similar to my age going through various hip problems and they have been the biggest network of support imaginable. I privately messaged a few of them and we have become great friends, we can help and support each other in different ways as a result of our varying backgrounds. I also met up with a girl who was waiting for a hip replacement, we are now very close friends and help each other through everything. Eventually I got the GP at my University campus in Guildford to refer me to yet another physician and I got an appointment on the 27th July 2018. Somehow, I had managed to make it to the end of my first year at GSA having had to watch 5 dance lessons a week for the whole year, which took a toll on my mental health, and I struggled to do the other elements of the course due to my hip pain. The whole year was extremely difficult both mentally and physically because I couldn’t push myself, show my true ability or engage in the activities I love. I wasn’t sure what would happen for my second year because I wasn’t in a good place to be trying to do a full-on physical course.
My first appointment with the new physician was very tough and overwhelming but finally finding someone who understood my own feelings and wanted to help me in every way he could was a miracle. He did not diagnose me with anything on my first appointment as he wanted to do a steroid injection in my iliopsoas to see how my hip reacted. He told me very definitely that I would not be able to go back to Guildford School of Acting that September and I wouldn’t be dancing for a while. I knew that this was probably going to be said but the actual words being heard out loud from the most prestigious hip specialist in the country was extremely upsetting. The week before this appointment, my mum had been offered a teaching job abroad in an international school. The timing of this appointment was initially difficult as she only had 4 weeks before leaving for Turkey.
On the 2nd October 2018, I had my second steroid injection in London under general anaesthetic and had to wait another 8 weeks before seeing the physician again. Sadly, after the injection I had the same response of my hip pain getting progressively worse and then back to its original pain level. The physician had explained to me at my first appointment that if the steroid injection did not have a positive response that he may look into doing key-hole surgery to investigate deeper into the hip joint. On Friday 16th November, I went to London for my second appointment prepared to be told I would need key-hole surgery. Firstly, I saw a member of the physician’s team who did a physical examination, checked my scans and asked me about the last 8 weeks. He believed I would need key hole surgery but wanted to chat this through with the physician before finalising this. The physician then came into the room and undertook another physical examination, looked very closely at all my scans and x-rays and asked me several questions regarding the injection I had previously had. He knew straight away that there was a much bigger problem with my hip and that key-hole surgery would not be the solution. I was diagnosed with hip dysplasia and retroversion and possibly a labral tear too.
A PAO (Peri-Acetabular Osteotomy) was the only thing that was going to help me due to the extent of my hip condition. This came as a shock to me because I did not know my hip was in such a poor state, but it was also a huge relief that someone finally knew the cause of my pain and that my own instincts had been correct the entire time. The array of emotions did not appear until I left the hospital when everything suddenly hit me. I was absolutely relieved I had finally been diagnosed but very scared regarding the future and also having to wait 6-9 months for the surgery. Suddenly I did not know how to react or feel due to the intense emotions I was feeling inside at this time. Chatting this through with GSA, the head of my course was incredibly kind and supportive and told me that I could have another year away to recover and that my place was still available for me until September 2020.
The ‘hippies’ from the Facebook page I had joined invited me to the PAO group which has provided the utmost support through every physical and mental feeling, along with any questions I had. I waited many months to hear anything from the hospital and was gradually deteriorating with my hip pain and needed to have the surgery as soon as possible. In February, I was given a cancellation for the 25th April 2019 and it was a relief to finally have a set date so I could plan. During these few months, I attended my local gym with my boyfriend to help strengthen my arm muscles in preparation for using 2 crutches after my operation. On March 25th I attended the hospital for my pre-operative assessment running through all the information and having checks to make sure I was able to go forward with the surgery in a months time. On Friday 29th March I received a phone call from the secretary explaining that my surgery had been postponed to the 9th May due to an urgent matter. This knocked me back and made me quite upset because I had planned for the 25th April physically and emotionally, as well as my mum and sister being around as it landed in the Easter holidays. Luckily, this was only 2 weeks later than the original date, so I did not need to worry about dealing with the pain for many months after that. During April I had the most perfect 21st birthday with 3 very wonderful people. This was very special to me that I could celebrate this and forget some of the stresses of the upcoming surgery. Med-equip provided all the necessary equipment in my house to aid me after the surgery – 2 raised toilet seats with handles, a stair handrail, kitchen stool, bath board and bed handle. Furthermore, I bought a litter picker (which would be used as a knicker picker!), extra large tracksuit trousers, shorts, pants, T-shirts, ear plugs, dry shampoo and wet wipes all in preparation for my time in hospital and the following months. As my surgery drew closer, I was feeling extremely scared but also prepared and ready because my hip was causing me unbearable pain and needed help urgently. The support I received from my mum and sister even though there is much distance between us is remarkable. Friends and other family members have assisted me when I was in need of lifts to appointments and supermarkets, but the biggest support I would not have survived without came from my boyfriend who has provided support in every way imaginable and is a truly special person.
Along with all the rollercoaster of emotions I have experienced with the pain and thoughts of surgery, I have had to attend many appointments at the job centre and health assessment clinics in order to gain PIP (Personal Independence Payment) and Universal Credit. This has caused a tremendous amount of stress because I am unable to work with my hip condition and needed financial and mobility assistance. In addition, I have been on amitriptyline and pregabalin for the past year as well as needing to take paracetamol, codeine or naproxen, on days of increased pain. The last 20 months has been a debilitating experience. I cannot wait for my life to positively change after the surgery. I know that the first few months after surgery will be very difficult, but I will finally be recovering rather than deteriorating and I absolutely cannot wait to have my normal quality of life returned to me. I look forward to being able to do the simplest things pain free, which are taken for granted when you are fully fit and capable.
On the day of my surgery, I was nervous but also very determined and excited about finally getting the help I needed to start my recovery process. To start the day off in a positive way, I was first on the list. This meant I was able to see the nurse, surgeon and anaesthetist straight away and didn’t have to sit waiting or allow my worries to arise. The panic set in when the anaesthetist started explaining about an epidural and that they advise you have this as well as the general anaesthetic. I wanted to do the right thing and stay brave and strong, so I agreed to this. After giving my mum the biggest hug, I said goodbye and they took me to the surgical ward. Unfortunately, I did then have to lie and wait on the operating bed whilst all the professionals had a chat about the surgery they were about to begin. At this time, I felt alone and scared and the best thing I could think of was to sing… so I sung quietly to myself to keep myself calm and in the right headspace. During the epidural, I had to sit on the edge of the bed and hug my knees to my chest so my spine was curved. The anaesthetist has to be extremely precise to find the bottom of the spine where the epidural is inserted. I suddenly felt a sharp pain in my leg, so he had to slightly adjust my position in order for the correct place to be found. My bum cheeks immediately felt warm and I lost feeling in my legs, so they quickly swung me round and placed my head below the angle of my feet. The general anaesthetic was instantly placed into the canular in my hand and I fell asleep.
When I awoke about 3.5 hours later in the recovery ward, I did not have any pain in my hip or legs due to the epidural, so I was very thankful this all went accordingly and that I had agreed to the additional anaesthetic. Due to the lack of beds in the upper wards I had to stay in the recovery ward for nearly 9 hours!! However, fortunately it became apparent that I needed to stay there longer anyway due to complications regarding my painkillers. As soon as the epidural started to wear off, I experienced a strong pain in my operated hip and the nurses put me on a morphine drip (this is the usual pain relief following a PAO). Unfortunately, I reacted badly to the morphine and suffered constant cramp in my whole body, as well as my hands tensing up into claw-like positions. The drip was changed to fentanyl which sadly also gave me the same reaction. The nurse on duty looking after me was incredibly kind, calling my mum and allowing her to visit me for short intervals due to being in the recovery ward for so long. I had a lovely surprise when my sister suddenly emerged from behind the curtain as she had travelled from university in Guildford to be with me and support me. At 10pm that evening, I was finally transported to a ward upstairs and placed into the hands of some extremely kind nurses and doctors. The first night after the operation, the nurses have to take your obs regularly as well as giving you lots of medication for the new pain. I didn’t sleep one wink the whole night, which was frustrating, but did mean the nurses didn’t have to keep waking me up. They also eventually found another painkiller that I didn’t react to called oxycodone which I took every 4 hours as a quick release and a slow release tablet each morning and night.
The following day, the new nurses arrived at 8am when they swap shifts and they were all very caring and supportive. They helped me complete my menu choices for lunchtime and tea and I chose an egg sandwich and tinned peaches, followed by a jacket potato with tuna and jelly. Due to being coeliac, there wasn’t much choice, but they could always provide something for me even if it had to be slightly varied from the original recipe. The visiting times at the hospital were brilliant and allowed visitors from about 10am – 8pm with an hour break for lunch at 1 – 2pm. My mum and sister visited me everyday and brought me a card to keep me going every morning. Furthermore, on the second day, they bought me the best present of a cuddly elephant who I called Elmer and he helped me in hospital through every single day and night. The first time I sat on the edge of the bed and stood up was the scariest but most uplifting moment of my life. It was the biggest hurdle I had conquered but having overcome it made each day that little bit easier. You begin using a frame and taking small steps, with the operated leg followed by the able leg. Walking for the first time after the operation was a huge triumph and I essentially was re-learning how to walk again. The physiotherapist was the most genuine, kind and extremely lovely lady who helped me achieve some incredible accomplishments and I would not have survived the week in hospital without her. She came every day to help me walk that little bit further and easier, as well as giving helpful tips and tricks to support me when sitting and lying in bed.
On the 5th day in hospital, I received an extremely wonderful surprise of my boyfriend turning up with gluten free carrot cake and a card. It meant so much that he was able to visit me. Luckily, the physio was able to come for a second time so he could see me walking with the frame. Just seeing his face and getting a hug was everything I needed at that moment. The physio explained that I could place up to 20kg of weight through my operated leg for the first 6 weeks. Initially, when I put my foot on the scales, I was only putting 8/9kg at the most through my operated leg and this felt like a huge amount. It was very interesting to see this so I knew the weight limitations and that I had something to aim towards. On the same day, I was also visited by my online hippy friend and we finally got to meet in person for the first time after chatting online for nearly 9 months!! It was truly wonderful to chat in person after we had spoken over message about her previous PAO and that she was going back to Belgium for her second one the following week. Sadly, after my catheter was taken out this day, I went into retention over night and they had to re-catheterise me the following morning. Additionally, I got a UTI from the catheter leading to me being unwell for 2 days and taking antibiotics. This pushed me back a couple of days resulting in a longer hospital stay, but it was the best place to be as they thoroughly looked after me and made sure I recovered as soon as possible.
Day 8 was the biggest turn around which surprised me, my mum, the physio and the nurses. A miracle must have occurred on this day. The nurses removed my catheter for the second time and the physio swapped me to using crutches. Surprisingly, despite never using crutches before, I adapted to them immediately and found so much joy in walking to the end of the room just as my mum arrived around the corner. I was then able to do a little walk with my crutches every couple of hours that day, in order to start getting used to the feeling and begin strengthening my operated leg. Miraculously, I felt so confident and determined and therefore also conquered the stairs with the physio and an assistant which felt like an enormous achievement. Due to these successes, the physio was happy for me to go home and only needed to confirm this with doctors. After an extremely successful day, they all agreed that I could be discharged the following afternoon on my 9th and final day in hospital. This was amazing news and made me feel proud of my triumphs.
My first week back at home was rather daunting initially but also felt much more comforting to be back in my own safe environment. Luckily, I had a sofa chair which could be raised at the feet which made sitting down much more comfortable and easier for my hip. At the beginning, the little tricks and mantras were difficult to remember but after a few days they already occurred more naturally. Placing the 2 crutches in front of me with the handle bars facing inwards to each other was very important when I wanted to sit down and stand up, as this made the crutches stable in order for me to do these manoeuvres safely. Going up and downstairs was definitely the hardest and most unnerving task, I always had someone behind me going up and in front of me going down. I had to hold one crutch on my op side and then the bar going along the stairs for my other hand, taking it carefully and slowly not putting too much weight through my op leg. Getting in and out of bed was also very difficult at first, this was much easier for the initial weeks when someone swung both my legs round together so they stayed in line. I started by sleeping on my back every night and then was able to sleep on my opposite side with a pillow between my knees and feet.
I definitely needed someone with me through the day and night for the first 4/5 weeks because every little basic thing that would usually be easy, became scary and a much bigger deal. I was given a few standing up exercises from the hospital in London that I did several times a day – leg and knee raises sideways and backwards which I gradually built up in height and frequency. I got my mum, sister and boyfriend to video these exercises every few days so I could see my progress because it was extremely difficult to notice this myself. These videos really helped me to stay determined and focused on the journey ahead. The surgery stockings definitely were irritating at first but then became hilarious and rather flattering apparently and became the talk of the time by lots of people. They were so tight, I had to get someone to put them on and off for me (my family and friends did not find this activity amusing!), but the easiest way was to place a small bag over my foot first so the stockings slid on more easily. I had to wear these for 6 weeks, with an hour off each day and I never felt so free when this was finally over! I was also very pleased when the 4 weeks worth of blood thinning injections had finished because I always had to look away when my family did these for me, and my bruised stomach was definitely thankful for the finish date.
Life as I now know it
I definitely had to lose my sense of dignity when I was in hospital but also at home for the first 4-6 weeks. I needed assistance having a shower and putting underwear on which you don’t think about someone having to do these things for you at the age of 21! I found a trick of putting my feet on a small bin first and then getting them over the side of the bath whilst sitting on the bath bench I had been given by Med-equip. Getting in was hard enough but getting out was definitely a challenge in itself. A good trick I am still using, is to do my teeth whilst sitting on the raised toilet seat with handles as I felt secure and comfortable so could at least do a few things without assistance. The most crucial apparatus that I bought before my op was the ‘knicker picker’ which eventually I could use to put my own pants and shorts on but also if I dropped anything; this is still very helpful to reach for things as I am unable to lean forwards. When I started having a few hours on my own some days, I attached this to my clothes so I could take it with me in case I dropped my crutches (this did happen sometimes 😉). For the first 6 weeks I rotated between sitting on the settee, doing my exercises, having a little walk in the garden and sleeping, with an occasional little trip out if I was feeling strong enough. Between 3.5-6 weeks I managed to adventure out into the real world for a cuppa which really built my confidence and was great to get some fresh air. I had to make sure I took pillows with me and knew if the seating was going to be comfortable. There was and still is lots of extra things to think about that you wouldn’t normally need to even consider.
The biggest and scariest occasion was 6 weeks post op when I took a fall in my bedroom due to feeling dizzy and slightly faint. I suddenly hit the floor backwards and my crutches fell out my hands and I felt confused and shaken. I was extremely lucky that my sister was in the house and ran into my room once she had heard the loud bang on the floor. The pain gradually increased in my hip, bum and back and I was very shaken and scared with the situation. My sister managed to lift me and get me onto my bed where I took strong painkillers. These helped quickly as we caught it in time but the biggest thing was how shook up the fall made me – and my sister! I was unable to weight bear in the same way and my hip and leg definitely felt different and not as it did before. I rested for a few hours but then the pain increased again and I was scared if I had caused a stress fracture in my operated hip. I needed to get some reassurance and assistance so I rung 111 who sent me an ambulance within an hour which was very efficient. Due to not being able to get downstairs myself after the fall, the paramedics carried me downstairs and took me to hospital as I needed to have an x-ray to be fully certain. After a long afternoon, we found out that nothing sinister had happened and there were no fractures, which was brilliant news and what I needed to hear. I was in much more pain for the next week and had to take codeine in addition to the paracetamol but I was very lucky I hadn’t done anything to affect my recovery.
The physical challenges and limitations were already hard on their own so when emotions started to compete too, some days were very difficult to handle. Staying positive all the time was next to impossible when I had a very down day, so I had to hold on to the small good moments and the fact I was slowly recovering and progressing even when I couldn’t see it myself. The support I received from my family, boyfriend and friends was extraordinary and I wouldn’t be able to carry on sometimes without them. I definitely started questioning myself some days but other days I kept a smile on my face and my exercises felt that tiny bit easier.
My 7 week check up in London was the biggest day I’d had since my operation, however my boyfriend was by my side and the appointment was very positive and optimistic which was everything I needed to hear. The surgeon was pleased with my progress and how my bones were healing and told me to gradually increase my weight bearing over the next 6 weeks with 2 crutches. After this, I will hopefully be able to change to 1 crutch as my strength increases and I feel more confident and ready. I am now excited about moving my progress forwards with hydrotherapy and physiotherapy now I have started these. This is a long journey but I am progressing everyday and on my way to my end goal of performing again in the future.
Physiotherapy and hydrotherapy have worked wonders for me since my operation. I have gradually increased my exercises and reps when I see my physio every 2 weeks and she is so happy with my progress so far. At home I do my exercises about 4 times a day with 10 reps on each exercise and remarkably we have a massage couch that I am able to use to do my exercises on, which is absolutely perfect! Last week at 11 weeks post op, I went on a static bike during my physio and even though this was very painful to begin with, it felt amazing to be moving again and see my own progress. Hydrotherapy has been the most beneficial treatment and such a worthwhile experience for the past 6 weeks. Every Friday morning I have had 20-30 minutes in the hydrotherapy pool at the hospital which has gradually increased my strength and movement. The feeling you have while you’re in the water is amazing and I feel much more free and able to move efficiently. At nearly 3 months post op, my hydrotherapy teacher told me that my range of movement was nearly equal in both legs in some exercises and I have never felt so proud of my progression!! I have borrowed an exercise bike so I am able to do a few minutes every few days to build up my range of movement. Next week at my physio session I am hopefully going down to 1 crutch which is scary but so exciting!! It will be such a massive achievement and my recovery will continue going up and up. I feel like I’m starting to move and walk more freely and cannot wait to be off crutches completely and then my recovery will take off fully!! At 11 weeks I have taken solace in playing my flute and the love and ability has instantly come back. Being able to start doing little things again is slowly bringing me back to life. I have to remember how strong I am and that us hippies can get through this.
At 12 weeks I finally walked for the first time without crutches which was a truly incredible and emotional and I will never take walking for granted again. I started walking round the house crutch free but took 1 crutch with me for a few weeks when I left the house. I started to feel more alive and human again now I was able to walk short distances which in turn helped me mentally too. A few weeks later I started to walk more crutch free which at first was actually very daunting, because even though I looked like I could easily walk, I was still a little shaky on my feet without my crutch companion and didn’t want to be bumped or knocked over. My confidence started to grow and over the following few months, the distance I walked increased and the pain became more tolerable and easier to manage. My follow up appointment on September 13th in London was the most positive appointment I have had relating to my hip, and I was overjoyed at how happy the surgeon was with my progress and x-rays. This was the boost I needed as I knew I was heading in the right direction and progressing towards the light at the end of the tunnel.
On September 24th I attended my first lower limb class at the hospital. It was nothing like I was expecting, there was much more involved and only 5 of us in the class all around a similar age. There were 10 stations each with 3 or 4 levels for you to increase slowly over the weeks depending on your injury and your physio’s guidance. The stations worked on balance and strength in your operated leg as well as a static bike as the warm up and stretches at the end. I was so proud of what I achieved as it was the most I had done in 2 years and I then couldn’t move for a few days as I needed lots of recovery time. As the weeks progressed, I could gradually do more on each station and move onto higher levels as well as the recovery time getting quicker each week. On November 12th (nearly 7 months post op), I did my first low impact activity gently jogging with light feet on one of the stations. The feeling was very strange and I did feel nervous but whilst I was doing this, there was very little pain and I was so amazed at how it felt. The pain did start increasing a few minutes later and was painful for the rest of the day but by the next day, I was already feeling recovered and able to do things again. This showed how far I have come and how my body is recovering quicker and taking to exercise and physical activity more every time. Furthermore, I have started doing small walks a few times a week and completed a 3 mile walk very recently with very little pain and it felt incredible to do this without any assistance. I am looking forward to increasing the distance of my walks and the levels at my class over the next few months. I also travelled a long distance to visit my mum for a week, I was nervous about all the travelling and long distances in the airport but with some airport assistance my journey was relatively smooth. During the week, I walked further than I had in over 2 years and me and my mum were both so proud of my progression throughout my journey.
I have been able to decrease my pregabalin a huge amount and only take paracetamol and diazepam occasionally if needed. At nearly 7 months post op, I cannot believe what I have achieved and even though it’s a long journey as recovery is usually a year, I have got to hold on to how far I have come since the 9th May. I still have up and down days physically and emotionally as this all relates to the recovery and how much and many things it affects. Without the PAO Facebook group I wouldn’t be where I am today as I have made friends for life who have been there and supported me through everything. Having people who can relate and understand every single feeling you have, makes each step that bit easier and that you’re not alone in this journey. My next appointment in London is January 10th when I’ll be over 8 months post op and I am looking forward to another positive experience.
OllieI was diagnosed with severe DDH (high dislocation), when I turned three years old. By this time I had been to the ER 8 times,...
I was diagnosed with severe DDH (high dislocation), when I turned three years old. By this time I had been to the ER 8 times, I had been to my local doctors many times, I had many ultra sounds and I must of had at least 30 x-rays by this point.
It was only when my play group, my nursery teachers, my relatives (one of which is a nurse) and a family friend had written letters would my doctors take the fact that my walking was actually more like waddling and I put little pressure on my bad hip that I was refereed to a orthopedic specialist. A month later I saw him, he took one look at me and recommended an open Reduction, Pelvic Osteotomy, Femoral Shortening and Varus Osteotomy. A couple months later I had the surgery, as far as they thought it was a success.
((I actually remember waking up from this surgery, I couldn’t stop vomiting and I didn’t know where I was or who I was.)) I kept crying and screaming trying to rip the cast off; by this point they took me for an x-ray.
Little did we know a pin slipped out of place and the hip was very unstable so they removed the cast. A few days later I was back in the OR to have this placed again and another spica cast. This time it worked but my hip wasn’t healing as fast as it should have done and no one knew why and none of the tests they did with the cast on showed why, so they just monitored it and warned my dad that they may need to do another surgery. I’m kinda glad I didn’t need it in the end.
I was in a spica cast for 6-8 months, they took the pins and plated out of my hip and during the surgery my hip sublaxed so they fixed it and the cast went back on. I was almost 6 years old by the time my hip had healed. thankfully!
Now I am 17 years old. I have a check up for my hips every 6 months. Later on in life I am going to need a full on hip replacement and I have severe arthritis in my right hip.
I must say I am very grateful for my dad (as he was the only parent I had growing up) making me have the surgery I did and putting up with my constancy crying due to pain and ‘fragility’, also the time he took of work to take care of me. If he wasn’t so persistent, who knows if I would still be able to walk.
RebekahIn 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!
Shelby’s StoryMy name is Shelby and I was first diagnosed with Hip Dysplasia when I was 19 years old. My story started when I was 14...
My name is Shelby and I was first diagnosed with Hip Dysplasia when I was 19 years old.
My story started when I was 14 years old and very active in high-school volleyball, basketball and softball. I was a pitcher on our high school softball team when I first started having pain in my right hip. It started with what felt like a pulled muscle. I went through 2 months of physical therapy, but it never really got better and the pain would come and go.
A year later, the pain was more constant so I went for a follow up with a specialist who did multiple x-rays, CT scans and even watched me pitch. They still couldn’t find a solution. I continued to do physical therapy and was put on anti-inflammatory pills. At this point, tired of doing physical therapy and not getting anywhere, I decided that this was something I would probably have to live with. I went on to finish out my high school athletic career and went on to play volleyball at Wartburg College.
Since I was down to playing only one sport in college; the pain in my right hip subsided until the summer after my first year of college. I was in practice with the team, before the start of my second season, when I came down from a block and pain went through my leg and into my hip socket. I went to the emergency room and I knew something was really wrong.
They performed yet again another x-ray, where they found I had hip dysplasia in both hips, but it was more prominent on my right side. They said the only fix was to have surgery, a Periacetabular Osteotomy (PAO) or a Ganz procedure. Since it was right before the season started I opted to wait until afterwards.
On December 11, 2003 I had a PAO on my right hip. The surgery took approximately 5 hours and I was in the hospital for 5 days. I had to have 2 blood transfusions during my stay and an x-ray was taken the day after. I had a follow up x-ray a few weeks later to make sure the bone was healing properly; and another follow up 2 months after surgery which confirmed the bone had healed and I could start to put weight on it again.
Four months after the surgery I was able to start running again and eventually started playing volleyball again. I was able to play volleyball the next season which was only eight months after having the corrective surgery. I also had follow up x-rays after one and two years respectively. The x-rays confirmed the screws were still in place and nothing had shifted.
Now, seven years later, I have no pain in my hip socket and able to run and workout like I would like to. The only issue I have seen from the surgery is tightness in the muscles in my right leg.
I hope that my story might help adults who have been diagnosed with hip dysplasia see that there is another solution to this and it is possible to return to a normal life, pain free!
Note from IHDI: We followed up with Shelby 6 years after she sent us her story. Read that interview here: https://hipdysplasia.org/news/latest-news/where-are-they-now-shelby/
TaylorThis is my story about hip dysphasia and the sport I loved, and how I hung up my towel long before it was time to...
This is my story about hip dysphasia and the sport I loved, and how I hung up my towel long before it was time to give it up. My name is Taylor and I’m 19 years old. I am currently a sophomore in college. I go to a small private school in Michigan, where I originally came to play volleyball. I have always played sports and there was never a time in my life that I was not active. I was always healthy and fit. I played mainly soccer and volleyball but ended up leaving my soccer career behind to focus on volleyball during my sophomore year in high school. I graduated high school and was officially signed to play volleyball at the collegiate level. Volleyball was a big source of happiness in my life and the fact that it was only just beginning, made me the happiest person in the world. I was on top of the world and felt like nothing could stop me.
It was 2017 and it was my first semester in college. Not only was it my first year in college but I was also playing volleyball. The season went great and even though I didn’t play much, the fact that I was on the team and contributing to the success of my team was enough. Christmas break came sooner than expected. The team still had work outs that we were encouraged to do by ourselves. Naturally, I liked to workout and this was no problem for me. I couldn’t afford a gym membership so I would use what I had at home, which was never a problem before. One morning, about a week into break, I woke up and sat up. As soon as I sat up there was a catching or popping feeling in my right hip. It was so painful that I sat in bed for the longest time pressing on my hip while tears welled up in my eyes. After the pain passed, I assumed that I just moved in a wrong direction. I didn’t think anything of it.
As the day moved on, the pain radiating in my leg got worse. I talked to my dad and we assumed that I pulled my groin from working out. I iced it and rested for the rest of the day. As the days passed getting up from a sitting position was met with the same painful pop as did opening or closing my legs. Again, I never thought anything was wrong besides a pulled muscle and so did everyone around me. As the weeks passed, it didn’t get better. It stopped me from working out completely. Finally, I had enough and needed to see a doctor.
I saw an orthopedist a couple days before I had to leave for school. They took an X-ray and I was told I had completely normal and healthy hips and to just stick to low-impact exercises and to come back in 2 weeks to check on the progress. There was a bit of a problem with the low-impact excercises because second semester consisted of high-impact conditioning two days a week with a lifting regime on top. I was given a note for my coach. I emailed my coach and told her about what was going on which she responded with wanting to talk to me in person. I didn’t see much wrong with this. I was very wrong. My coach told me that it was “sketchy” that I couldn’t participate because I was having a pain. Obviously, I took this as her thinking it was a way to get out of 6 AM conditioning. She didn’t even want to see my doctors note. I didn’t know which was more painful, the horrible pain my hip was causing me or having a coach that I looked up to imply that I was lying.
Two weeks passed and still no answer to my pain, I was put on crutches for 6-8 weeks. This was of no help. Weeks later, I was told to get an MRI. Waited to get the MRI, waited for the doctor to look at my MRI. The MRI showed nothing. I was told I could get a steroid shot or try to rest more. I tried to rest more. The next doctors appointment, the same doctor who told me that I had healthy hips decided to look at my X-rays again. He came to a conclusion and said that I might have hip dysplasia and the only option was surgery. He pointed me towards a hip specialist. This specialist had a long wait time and I wouldn’t be able to be seen until the end of May. I didn’t want to wait that long with the pain I was going through during every hour of every day. My mother found a specialist that could get me into a consultation earlier. The consultation consisted of more x-rays, physical examinations, and talks of other options for the sole reason of not wanting to get surgery because I didn’t want to miss a year of collegiate volleyball. Finally, despite the lectures about how hard surgery and recovery are from my parents, I decided to have the preservation surgery on my right hip, 3 days after I got home from school.
May 3rd 2018, is the most major day in my life so far. I got to the hospital at 5:30 AM with my parents. I was the most scared I have ever been, but I was also excited for the future, to be recovered and finally be free of pain. I was in the hospital for 4 days and 3 nights. I was in so much pain and every little movement scared me. I couldn’t do anything by myself and even when I left the hospital I needed help with everything: from showering to putting on my socks.
I was on crutches, which I chose to use instead of a walker, for over 8 weeks. Even after, I didn’t walk the same. I had a limp and couldn’t stand or sit for long periods of time. I did in house physical therapy until I was off the crutches. Then I had even more physical therapy for 4 months until I decided that I didn’t need it anymore.
It is currently February of 2019. As I reflect, I can confidently say that the surgery helped but I am no where near to the level of fitness I was before. Not only do I still have trouble with walking and sitting for long periods of time but my left hip is starting to feel the consequences from 15 month of favoring it. 2018 will forever be the year of my hip dysplasia. It defines that year and not a minute, hour or even a day went by that I didn’t have pain in any sort: pre-surgery to recovery. I was mentally and physically altered because of my dysplasia. I went from the happiest person in the world to crying every day from something my pain had caused. I entered a realm of depression that I couldn’t get myself out of. I was quickly wasting my 18th year by feeling sorry for myself. Not playing volleyball hurt me more than anything and on top of that I got self-conscious about talking about my hip. I felt like everyone around me was getting annoyed with my pain. I felt like they didn’t understand, and to a degree I was right. They didn’t understand what it was like and I had to go at this alone and at my own pace. I isolated myself, not wanting to go out with my friends in fear of being a bother and spent time away from my family in fear of them getting annoyed at how slow I was recovering (my family has always taught me to push through the pain). This pain was too severe to push through. At a time during my recovery I needed to reward myself for the little accomplishments, like lifting my foot up to even being cleared to drive. I made the best of every day once I realized that I’d be happier if I was happy for myself for making it through this rough patch. Regarding volleyball, Even though my doctors have told me that I am perfectly able to play volleyball again, I decided that it was time to leave it behind and focus on preserving my left hip to save myself from reliving the agony. I was sad for a while but eventually came to terms with my new life.
A quote that got me through and still helps me is: “Sometimes we must undergo hardships, breakups, and narcissistic wounds, which shatter the flattering image that we had of ourselves, in order to discover two truths: that we are not who we thought we were; and that the loss of a cherished pleasure is not necessarily the loss of true happiness and well-being.”
I am Taylor and I do not let hip dysplasia define my life anymore.
TylerIt was a dismal Saturday afternoon on October 23, 2013, and I was falling down the stairs. All I could feel was the ripping apart...
It was a dismal Saturday afternoon on October 23, 2013, and I was falling down the stairs. All I could feel was the ripping apart of my right femur and pelvic bone; it felt like I was involved in a dismemberment. I frantically fell down the stairs in what seemed like slow motion, while my family members stood there and witnessed my downfall. As soon as I landed, my mother ran over to see if I was alright, but from the petrified look on my face; she knew I wasn’t. Even with my mother seeing my facial expression, her only expectant response was, “Go put some ice on it — and take an Ibuprofen.” That was always my mother’s “go-to” when someone was ill or injured. I think she got that mindset from her dad, my papa, who whenever he cut himself, would just put a paper towel on it, and duct-tape it. I am the opposite. I am the type who thinks he is going to die even if it’s just a hangnail. Unfortunately, this injury was far from a hangnail.
I had been showing signs of my progressing hip dysplasia prognosis’. My right hip was deteriorating faster than a new 2014 Ford F150 driving off the dealership lot. We knew it was time for me to have the inevitable operation, a Pariacetabular Osteotomy(PAO). A Pariacetabular Osteotomy is a surgery that is to try and preserve the hip and delay a total hip replacement. Only one surgeon in the entire state of Michigan would do the surgery. The surgery involved strategically cutting my pelvic bone in four places and rotating it to cover my femoral head.
My hip dysplasia was an undiscovered issue that wasn’t diagnosed until I was an adolescent at the age of sixteen. After falling down the stairs I complained, moaned, and groaned the next few days to my parents about the stabbing pain in my hip region. This provoked them to schedule an appointment with my physician. So, it came time for me to go see my doctor. As a typical kid in school, I saw it just as an opportunity to miss school and not as anything serious. But as soon as I was examined by my doctor, he knew something was seriously wrong and he sent me to a radiology place to have my hips and pelvic region x-rayed. Getting my x-rays done was excruciating, the technician insisted on turning my hips and legs in the most unpleasant and painful positions possible. By the time I left there, I was in more pain than a human trying to urinate a marble. We had a call at home in less than thirty minutes after the x-rays from my doctor with the diagnosis of hip dysplasia and a referral to a hip orthopedic specialist. This was when my mom realized that no ibuprofen or ice was going to fix my hip. I was going to need medical treatment.
It was January 8, 2014, before I was able to be seen by the hip specialist, and I was getting worse. He ordered an MRI arthrogram when he examined me. That is a procedure where they stick a needle into your hip joint and inject dye into it to have a contrast for the MRI. This was not just any needle though, this needle was like the Rambo of needles. The needle looked like it was on more steroids than Lance Armstrong. It was one of those situations where you just naturally want to run away as far as possible. Unfortunately, when your hip is in stabbing pain and has deteriorating arthritis, your options are pretty limited. The doctor who was injecting the dye into me told me to lay down on the table and that it would only feel like a pinch. Well, a pinch is also what he would describe a car getting crushed by a compactor I imagined. When I was actually injected with the dye, it did not hurt very much, but only felt like a sting ray tail entering into my hip joint. After that I was taken to the MRI where I was forced to lay in a machine that was more obnoxious than a child’s tantrum and louder than a fighter jet. Fortunately, my hearing was shot in the first few minutes and I was able to drown out the sound of the MRI.
When taken out of the MRI, I was presented with the problem of not being able to walk due to the fluid in my hip joint. This was definitely a problem. I could hardly walk before and now I was being faced with not walking at all, temporarily. They brought me a wheelchair that looked like it was built to carry a sumo wrestler and was as wide as a couch. (I am oblivious to why they have a wheelchair of that description in a children’s hospital.) After eating a sufficient amount of popsicles to numb my brain, I was ready to leave. They wheeled me out in the wheelchair which had to be operated by a team of two people, I might add. I soon realized that I had to transfer myself from the wheelchair to the car, and noticed that without legs this was going to be an astronomical problem. Luckily, I was the king of hopscotch back in second grade, so I knew I could do this. I mentally psyched myself up for this the whole wheelchair ride to the car and then I proceeded to get into my car without a flaw.
We drove in a typical “Michigan blizzard” home, my mom gripping the steering wheel so tightly that her knuckles were as white as the snow. I was as apprehensive and tense as any typical back seat driver who felt completely vulnerable. To add to my apprehension, we received a phone call from my father who was at home, saying that the hospital had just called and that we needed to turn around and come straight back. Now, you can’t just state something like that and leave it that vague, but they did. So, now we are having to make a “U-turn” to go back, which was not very hard, though, on an ice covered road. Of course, a typical person’s mind will assume the worst possible case scenario, which is exactly what my mom does. I just assumed if they found something and they want us to come back; it must mean they can fix it.
We arrived back at the hospital with the greeting of a problem, no wheelchair, and I still can’t walk. My mom said we did not have time to go get one and come back, so with her supporting me, we ventured into the hospital with the expectation of bad news. We took the longest route possible to our destination it seemed. The MRI technician met us and informed us that they did not have the MRI imaging the doctor wanted and before the dye was out of my hip joint, he wanted to do another MRI. This led to me being put back into the cockpit of the pretend fighter jet and again losing my hearing which I had just regained. Of course, as soon as it was over, I indulged into numbing my brain with popsicles once more.
Fast forwarding about a week, we drove back to discuss the results of my MRI. This is when I was informed that the cartilage in my hip joint, the labrum, was obliterated and that my femur and pelvic bone were rubbing against each other causing very bad degenerative arthritis. The hip specialist said he wouldn’t touch it and was going to refer me to another hip specialist in another city. He told me that this doctor is the best in the state and only takes the “worst cases” — how reassuring.
February 10, 2014, was the earliest I could be seen by my new hip specialist. His office was located at the Children’s Hospital. The hospital was very dilapidated and gave me the assurance of a hospital in a third world country. When I arrived at the hospital we went to the orthopedic doctors’ office where they proceeded to check me in on a computer that ran using Windows 95. Then we were ushered into a crowded waiting room, where we waited almost forty five minutes past my scheduled appointment time. The doctor had requested x rays by an x ray technician who was rougher than sand paper. She, without saying a word, approached me and pulled back my sweatpants to check if I had any metal on the elastic band before my x ray. I was taken aback by the fact she just did that without saying anything and told her that she could have at least bought me a drink first.
After the encounter with the friendly, perverted “X-rated” technician, I was sent to an examination room to meet with the hip specialist. When the doctor entered the room he expressed a manner that exuded confidence and made me feel reassured, which was greatly appreciated after the underwhelming confidence given by the hospital, itself. He looked at my X-rays and told me that my options as a seventeen year old kid were between a PAO or a total hip replacement. Wow, I thought, they’re just all such good options; it’s basically choosing the lesser evil of the two. He told us the pros and cons for each operation and said that the PAO would only preserve the hip to the point of delaying a total hip replacement. So, we chose the route of a PAO.
The doctor told us for the PAO surgery he would need to do some testing, an arthrogram to be more specific. Great, just what I wanted to do, another Rambo needle in my hip joint. This was even more of an ordeal because I was at a children’s hospital where their policy was that they put you under general anesthesia for the arthrogram. I was not a big supporter of that and after ruthless fighting and bickering, we arranged for it[arthrogram] to be done without the general anesthesia. This was the worst idea of my life. I was taken back, completely conscious, to an operating room. If you have never walked into an operating room completely conscious and had to get up on the table, you are lucky. It is a very traumatizing experience that you do not forget. The room was very cold and gave a sense of hostility. I described to the anesthesiologist my interpretation of the operating table: it is like a warm toilet seat, it seems nice until you really think about it. The operating room nurses gave me a warm blanket to put on to reduce the hypothermia shock that I was already experiencing from the subarctic temperatures. The hip specialist came into the room and flipped up my blanket leaving me completely exposed to everyone in the room (very awkward) while he injected my hip with the same sting ray tail that I had already experienced a month earlier.
The ball was rolling and my PAO surgery was set for April 28, 2014, and I was very excited to have the day come where hopefully my pain would be alleviated. I had to be at the hospital at 5:30 in the morning on the day of my surgery, and if you know anything about teenagers, 5:30 in the morning is not part of their biological clock. But luckily, I was so scared the night before I didn’t sleep so I didn’t have to worry about getting up, since I was already up. Prepping for the surgery was pretty simple except for other than the lysol bath I had to endure. I wiped myself down with six lysol wipes that made me feel as sterile as the operating room. Before I went back to the operating room, I hugged all of my family members like I was going off to war, unsure if I would ever return. Of course I had the pleasure of walking into the operating room once again completely conscious and being told to lay on the operating table. This time there were so many more instruments and tools in the room and, being a curious kid, I wanted to see all of them. That was also a huge mistake, it was similar to a death row inmate wanting to watch the guy in line before him get executed. Next thing I knew, I was on the operating table having my last functioning day of my right hip.
I woke up after surgery to find myself extremely lethargic and exhausted which I was informed is normal after a major operation. I was in the recovery area and was not allowed to see any of my family members so I laid there and panicked like an eaglet wanting his mother who was off fetching food. I was told it was going to be a while before they could get me situated into a room because space was limited. I was thrilled and ecstatic to be spending a few days in such a comfortable and delightful environment. I assigned a room in the burn unit, and I could not have asked for a better place, unless I actually wanted to be able to sleep, that is.
My hospital stay was in a room that I had to share with a small child who was covered in burns. He was brought to the room around three in the morning. He was screaming and crying, which is definitely not a conducive environment for someone who is trying to sleep. Thankfully, I just had to push my morphine drip one time and I was out and on my way to drowning out the small child. My hospital stay wasn’t just difficult and uncomfortable because of this roommate, but also because of my first experience with a straight catheter.
A straight catheter is only admitted into the bladder long enough to drain it and then it is promptly removed. Sound simple? Well there is nothing simple about it. When it was decided I needed a straight catheter to empty my bladder, an ultrasound of my bladder was the first fun step of the process. When I was getting ready for the catheter, my heart rate became extremely arrhythmic and sent me into borderline ventricular fibrillation. The catheter was inserted into me, and I experienced a new type of pain that even morphine couldn’t help. This was the only time I had been in so much pain, I could not cry. The nurses had it almost all the way up there but could not pass it into the bladder due to what they called “special anatomy”. The nurses informed me that I would need a special pointed tip catheter to be catheterized. Now being a male, when they informed me that I was going to need something inserted into me with a pointed tip, I rationally decided I would rather die. Needless to say, my first catheter experience was one that I will never forget.
Now with my discharge from the hospital I was at home living on our ground floor with six weeks of trying to coordinate crutches. I was gifted with the ability to be naturally clumsy, so I feared the crutches would be interesting, but fortunately I did not have any issues with them. I had to be off my hip completely for six weeks while my pelvic bone healed and then I was to commence physical therapy for the summer. Physical therapy was a constant struggle of trying to become stronger while facing pain that hadn’t been alleviated by the surgery. Due to the tear in my labrum, I was not allowed to do any type of stretching exercises, this resulted in the intense tightening of my right leg.
I went to the doctor at the end of the summer with the same pain I had before surgery, and there the surgeon deduced the PAO surgery was not a success and that I was going to need to try a total hip replacement to completely alleviate my pain. Post surgery x-rays showed my labrum being more damaged than pre surgery x-rays. The hip specialist said he would not do the total hip replacement on me, because, in his exact words, “it is too easy of a surgery for me”. He referred me to a hip replacement doctor in yet another city who had served a residency with him.
Fast forward a few days after that appointment and the Orthopedic Center called us to schedule a consult for my hip. They scheduled the consult to be in February of 2015, but using the pity story of “I want to walk at graduation,” I was given an appointment at the beginning of January. I went to the Orthopedic Center to meet the next doctor in my prolonged hip journey. He was a man of about forty and was very relaxed in his manner, but was still confident. This was also my first doctors experience after becoming eighteen, which resulted in more signatures than J.K. Rowling would sign at a Harry Potter book release. I went into an examination room where I was asked to change into shorts they gave me, at least twelve sizes too big. They x-rayed my hip in very painful orientations once again. The doctor came into the room and told me that the x-rays were bad and that he would recommend a total hip replacement — well duh, kind of why I am here. He asked me, coming from the small town of I lived in how I found him as a surgeon. I told him that the hip specialist had recommended him, and this apparently boosted his ego into a new aura. The doctor scheduled my total hip replacement to be January 28, 2015.
Knowing that my pain was finally going be alleviated after over a year of suffering was quite the relief. I was ready for the pain to be gone and to put this ordeal behind me. Before this surgery I was given this fancy soap, mouthwash, and nasal ointment that I was supposed to use for four days before surgery. I attempted one day before surgery to finally just try and use the soap but it made me gag and my eyes water, so I decided that I was going to take sepsis before I was going to use any of those fancy disinfectants that I was given.
It was surgery day and I had to be to the hospital at 5:30 in the morning to be prepped for my surgery. The prepping began with me signing so many papers that my hand was cramping. I was taken back and changed into a gown and was given more pills to take than they have at a Pfizer factory. The nurse that was inserting my IV was an apparent amateur and ended up giving me a very nice bruise on my arm. I met with the anesthesiologist before surgery and he told me I would be under general anesthesia for the surgery, but he said if the medicine didn’t work that he could use a hammer to make sure I was out. That was not reassuring. They wheeled me back to surgery and I was transferred to the sterile operating table and was out before I could count back from twenty six.
I awoke in a recovery room where I felt very conscious and alert. I sat up and was prompted to order lunch if I was up to it, and boy was I hungry. I ordered like I was at Old Country Buffet and only ended up eating two bites as I fell asleep just after I ordered. When my food arrived I jumped up and took two bites, but I guess the thought of food made me too excited, because I became tachycardias and promptly passed out after the two bites.
I am on my resilient recovery now and am two weeks post-op. I have begun physical therapy and can feel myself getting stronger. My pain has been completely alleviated and I feel like an entirely different person. I hope to be ready to start training for a professional speed walking competition this summer.
Whitney’s StoryWhitney is a young teenage girl who was diagnosed on Valentines day with hip dysplasia. Whitney is a very active girl. She loves volleyball and...
Whitney is a young teenage girl who was diagnosed on Valentines day with hip dysplasia. Whitney is a very active girl. She loves volleyball and has played school and club ball all year. She water skis, hikes, bikes, etc.
In the fall Whitney was at a volleyball game and dove for a ball. When she got back up she was in terrible pain. We were told through x-rays and MRI’s that she tore her labrum and had a cyst. We have been to 5 doctors since that time, two sports medicine doctors saying she also had hip dysplasia. We were referred to a surgeon who agreed Whitney had hip dysplasia in both hips, and needed to have a A Periacetabular osteotomy surgery .
Our journey has just begun. I am worried about signing my young daughter up for a surgery that may cause her more pain and additional surgeries. Right now if she is not playing sports she does well, and has only infrequent pain. I don’t know if doing it early will spare her future problems, or cause them. Please share your experiences!
ZoeyHello, my name is Zoey. On 4/19/03 (my date of birth) my doctor found clicking on my hips, and I was diagnosed with severe developmental...
Hello, my name is Zoey. On 4/19/03 (my date of birth) my doctor found clicking on my hips, and I was diagnosed with severe developmental hip dysplasia. I was placed in a hip spica cast at night for 6 months. Doctors told my parents I should not be walking in my cast. Although I defied all odds and placed one foot in front of the other.
Next, I was dancing, cheerleading, running across soccer fields, running the bases in softball, and fast breaking down the basketball court. My love for track and field began at the age of 9. I am the 2015 USATF-Mid-Atlantic Junior Olympic champion of the 200 and 400 meter dash. The following year my hips gave me a run for my money, and I was incapable of competing my 7th grade season of outdoor track. This was not the end. My freshman year of cross country, I placed 37th/98 girls in my district and 41st/54 girls in my league and ranked 3rd on varsity. Freshman year of track, I placed 5th in the league for the 400m dash and 6th in the district for the 400m dash. The school record for the 400m dash is 60.3, my personal record is 61.61. My sophomore year was the year I planned on shattering the school record.
Finally, my sophomore year of cross country— I placed 18th/89 girls in the league, and 24th/85 girls in the district and ranked 2nd on varsity, also receiving league honorable mention. This winter I participated in indoor track and field, and found myself running the 600 meter and 800 meter dash. I pushed myself all season in efforts to increase my speed for outdoor. I experienced excruciating pain in my hips, yet gave 110% to the very end.
Sophomore year of outdoor has arrived, my hips lock consistently, putting me in unbearable pain. After my events my hips lock, yet after 5 minutes I’m capable of walking again. I finally over exerted myself in the 200m dash. I laid on the track for 8+ minutes, incapable of moving, my heart shattered because I knew this was the end. My right hip is believed to had dislocated and torn the cartilage. Right now, I wait for results of my MRI. If my doctors diagnosis is correct, I will need to see a surgeon immediately; and I can kiss my sophomore year of track goodbye.
I’m reaching out because I’m terrified, and I felt it was time to share my story, thank you.