Suri

Hi everyone,

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

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

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

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

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

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

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

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

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




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  1. Katey says:

    I am scheduled to have my right hip replaced at the end of January 2016. I had failed POA when I was 19. I am now 39. My femoral nerve on my left side was damaged and I have had progressive muscle atrophy in the leg since (despite all my efforts). I have a heavy gait I have never been able to resolve that causes me pain. After reading your story I’m afraid to do the hip replacement.

  2. Suri says:

    Hi Katey,

    I’m sorry to hear about your pain. I don’t want to discourage people from doing hip replacements because I know in some cases they help. Perhaps it is worth you speaking to your doctor about what is realistic to expect after surgery based on your own personal musculature and surgical history. I know that I needed to do my replacement at some point because the bones were really wearing away so I don’t regret doing it, but I do regret having false expectations and not really having clarity before and years afterwards about where the pain was really coming from.

    Good luck and if you’d like to be in touch and discuss more feel free to msg me on facebook Suri Ellerton Bengen

  3. nemia (nee'ma) says:

    hi. i really don’t know if my story will help or not… i’m 62 yrs old. i was born with my right pelvis deformed (along with many other birth defects). and my leg completely dislocated. in addition, i too have EDS. although, my eds also overlaps other connective tissue disorders, as well. my leg was totaly neglected until i was 6 yrs old. and because of the eds my leg was moving further, and further up into my body. by the time of my surgery my right foot was well above my left ankle. i broke my arm, and would not stop crying. at that time i FINALLY saw a doctor. he stepped in and got me some care.
    although, as you probably know there was no easy fix at that point. i spent almost 4 months in that hospital, most of that time in traction to try to pull my leg into place. it never got all the way there, but the surgeon did a ‘shelf procedure,’approx 2″ higher than it should have been. in other words, he put a bone graft above the ball so it could not travel up again. i have had no further treatment. i’ve had problems with it forever. unfortunately, when i went to doctors through the years i ran into many that were downright mean! one of them LAUGHED when he saw my scans!!! then he said, ‘that looks like it could just travel straight up!!!!’ then he said, ‘just wait until you can no longer walk, then get a replacement.’ one told me that it shouldn’t hurt! but to be fair to that doctor, because of my eds my leg was probably pulled down from the socket in those films, so did not look as bad. it pulls down with every step i take (from eds). then it slams bone on bone with every step! another doctor conviently lost my x-rays. then proceeded to go on, and on about how he could not read the MRI’s! (he just couldn’t figure out the birth defects) so, he sent me home, then sent me a bill! fot THAT! then another person who ‘calls herself a doctor,’ said – THERE IS NOTHING WRONG WITH YOUR HIP!!! so, i told her about the surgery… and i explained the situation. her only response was, ‘i have 4 more patients.’ then she opend the door and left! anyway, as you can imagine it has been a rough road. but i am still walking! not for a long ways. but i do walk. after i interviewd many surgeons in my area i found one that i believe can do a relocation / replacement. i feel that i have no other choice, except a chair, which i don’t want. my surgeon told me that, ‘a hip cannot get any worse than this. not unless it were to crumble and fall apart!’
    i kinda feel robbed by all the doctors that sent me away… when there may have been something they could have done to help me. but soooo many doctors just told me to wear a lift! only… duhhh, my makeshift hip socket was already 2 inches too high. then they wanted to make it seem even higher! i did try it, so i KNOW they were just not thinking it through. the 2 inch difference made my back hurt. then, it was not able to accomadate a 4 inch difference!!! i wonder why?
    from my experiences i believe that if anyone finds a good doctor – never let them go! i am scheduled to have my surgery next month, and i am terrified! it brings back many bad memories from my hospital stay as a child (PTSD). but i am confident that i have chosen the very best doctor for the job. so, i am blessed! you also mentioned about other issues: i, too do not know if i have all the muscles on that side, as normal. no one is looking into that. as it really isn’t going to matter, because it will still end up the same. the other thing that most people do not understand is with severe hip dysplasia everything else is also affected. when i sit, it is like someone else sitting with a book under one cheek… then fighting to stay upright. if i relax my hip rolls forward, and i collaps and fall to my right. oh, and my knee subluxates with every step… because of the eds, but also the way i have to walk with this hip. i’m sorry much of this was unplesant. but i do hope you found something usfull in it. i wish you all the good luck with any, and all future treatments! your fellow ‘hippy,’ n

  4. Suri says:

    Hi Nemia

    Gosh your story is hard to read. So many bad doctors, so much confusion, so much pain and frustration. I can really relate to a lot of what you said. I also had a doctor laugh when he saw my MRIs (we rely on them to be sources of support and information and they often come far short of that). Also I have the same thing with feeling like when I sit I’m sitting with one cheek on a book and I keep rolling. I wish wish wish that there were more answers for us and some solution that would make our lives easier and better but I feel from my experience and hearing about others such as yourself, maybe science is just not there yet. I guess we’ll just have to pray that research will help move this forward so people in the future won’t see the same problems. On a positive note, at least we weren’t born 100 years ago! I do feel like hearing your story has helped me because even knowing that I can talk to people who are going through such similar things is a huge comfort and it also tells me that I haven’t missed some magical answer to my problems. Thank you for sharing and I wish you all the luck with this new doctor and upcoming surgery and everything moving forward.

  5. leeann matuse says:

    Hey suri my name is leeann. I have had hip displasua since birth . I have had lots of suargurys . I have it in both hips my right hip is fixed .
    But my lift hip is not . You can send me a.friend request if youlike. I hope. You get some relife . Its not fun iknow. Thanks for.shring your story.

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