Patient Stories

Suri

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