Sarah

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

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

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

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

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

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




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  1. Suzie says:

    HI Sarah. My 14 year old daughters was born with hip dysplasia, but not diagnosed and operated on (open reduc & osteotomy) until 3 years of age. She is now looking at a hip replacement this summer on her left hip. It has been a very difficult decision!
    Thank you for sharing your story and I am actually very comforted by reading stories of people having successful hip replacements. It sure beats the alternative! My thoughts and prayers are with you and your daughter!

  2. Sarah R says:

    Hi Suzie, thanks for your kind words. I am sorry to hear your daughter has to go through this. I was made to understand that by doing the surgeries on my daughter at 3 years, we will be preventing her from needing hip replacments at such a young age.
    I hope your daughter’s surgery is successful and she can be pain free!

  3. Robin says:

    Sarah- My story is almost exactly like yours. I was diagnosed with bilateral hip dysplasia when I was born in 1979, I wore a slew of casts and braces. The docs believed it was fixed until the age of 12 when I started to limp and have pain in my left hip. I underwent a pelvic osteotomy at 13. I am now 36 and still have pain in my left hip. I have recently seen an orthopedic surgeon and he told me it was due to the 3 screws that were still in my hip. He gave me the option of removing them, but I am still undecided. I have a 5 year old daughter who was also diagnosed with hip dysplasia at birth, and wore a pavlik harness for a year. As of 6 moths ago, her x-rays look great and she wont have to go back to the doc until she is 8. Hang in there! :)

  4. jennifer says:

    I’m a 37 year olf female with bilateral hip displaysia I was diagnosed when I was nine and didn’t have my ostyotomy until I was fourteen om my right hip now theybeant to do double hip.replacements on me when I’m 40 I’m scared but have been dealing with the pain since I was little so u get used to it but as long as I can use the ones god gave me I’m opting to not have the surgury because they don’t last forever and I’m only going through that once good luck to you and your daughter I’m lucky and none of my kids werr cursed with this and I’m glad they didn’t have to go through what I went through hang in there

  5. Aracely says:

    I am 25 years old and young mother of 3 amazing and beautiful babies who, by the way thanks god, have not been cursed with this horrible condition. I was born with Bilateral Congenital Hip Dysplasia. My left hip is more affected then the right one. I was not diagnosed until i was about 2 years old and could really stand on my own for too long. I had surgery and supposedly had reshaped my hip sockets and had plates put in place to hold each hip until i was older. By the age of 10 my mother noticed that i was limping more and my pain got much worst. I was losing mobility. I was never able to run or play like any other child because the pain was just so terrible that i could not even get up at times. Soon we found a doctor in NYC who was able to help us. He performed a complete hip reconstruction of both hips. At this time we were told that if i did not had this surgery by the age of 25 i would be in a wheelchair. After the massive surgeries, and long hours of PT, the pain was gone, but due to all the surgeries, my left leg is now about an inch shorter than the my right leg. I was told the same as you Sarah, that from now on until i turned 30 or so i would need to learn how to live with some pain and my shoe lift. I don’t know about you all, but this has pretty much bother me each and every day. I dislike the shoe lift i dislike the fact i cant help but to limp every step i take.and most of all the people that cant help to stop and ask you or stare?

    About a year ago i had a check up and one doctor advised me that a hip replacement is not even an option for me, because my hip bone has ortho arthritis and is degenerating. Pretty much back to base one, i will be doomed to be in a wheelchair sometime in the next few years!! Others have told me that a periacetabular osteotomy (pao) will help but it would be a very painful surgery and recovery. Others have told me they cant treat me because they haven’t seen a case like mine. Really? am starting to think i have no hope, and i will have to deal now with pain that has come back ones more to hunt me and sad reality that i cant even go a take a long walk at the park with kids. I was told to lose weight to help reduce the pain. So someone please tell me what have you done because when you are limited to certain movements is this even possible? I don’t mean to be all negative in any way. I am so happy to have found this website and be able to see and read that there is other women and girls out there with similar issues as mine. I just feel like am losing hope.

    This coming 24th i have new doctors appointment with another hip preservation specialist at Duke Hospitals here in NC. Hopefully he can give me some light beside the same old story of deal with the pain ( Tylenol, ibuprofen, cortizon shots) which by the way have no effect on me anymore and to ware my giant lift. … I just don’t know anymore. I really don’t want to live with this pain in my joints and now even my lower back.

  6. Sarah R says:

    So good to hear other women’s stories! Update- I showed my xrays to my daughter’s surgeon. He said- I wish there was a way I can correct this. If I could, I would. But the combination of no cartilage plus bad arthritis makes a replacement my only option. Reading other stories makes me grateful that I still have options. So it is back to Dr. M and a second hip replacement.

  7. Joanna c says:

    I am 48 years old and was born with cdh, which wasn’t detected until I was 14. I had a bilateral femoral osteotomy, where my femurs were realigned and held in place with screws and plates then In a plaster cast from the ribs down. I can report that it was s success, I have however had some knee problems since being in my forties – and now suffer foot pain as I feel that my legs are still slightly incorrect. But, all in all I have benefited from this surgery and am happy that I had it done.

  8. Jennifer says:

    I was born 1978 with bilateral hip dysplasia. I was in a cast for 2 years from ribs down and a metal bar between my legs. It was nice to hear I am not alone. However I didn’t have any problems. Until I turned 30, I noticed if I move a certain way it feels like my hip or hips will lock and I have to move it to get it going or while I am walking they will pop with every step and I have to slow down my pace and narrow the gap of my step to get it to stop. My knees also are bad with grinding and popping and fluid build up. Not sure if the knee thing is connected but since I found this site I was wondering if anybody else had these same problems? I haven’t talked to my doctor about it because mine is not painfull. But I am wondering if I should before it gets worse.

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