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Chronic Shoulder subluxation In Ehlers-Danlos? no solutions?
I have Ehlers-Danlos syndrome, and about 2 years ago I dislocated my shoulder. The doctors have tried reducing it dozens of times- but it won't stay in. On x-ray it shows its always subluxated. I have been doing PT for that whole time, and it hasn't improved. I've talked to an orthopedic surgeon- but she doesn't want to perform on me due to the risks and not knowing what exactly to do.
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Hello @annamwbanana, Welcome to Connect. It must be frustrating after dislocating your shoulder to keep having problems with it. Sorry to hear that the physical therapy hasn't helped much. I'm not sure if you are familiar with the Elhers-Danlos Society but I did see they had an article on your problem if you haven't already seen it.
-- Dislocation/Subluxation Management: https://www.ehlers-danlos.com/dislocation-subluxation-management/
I also saw this reference article that may provide more information on the topic.
-- Management of shoulder instability in hypermobility-type Ehlers-Danlos syndrome:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10426500/
Have you thought about seeking a second opinion from a surgeon familiar with Ehlers-Danlos syndrome?
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5 ReactionsHave you consulted with a Chiropractor? What about red light therapy, checked into that? We see a Chiropractor and have off and on for many years. I have found a lot of benefit to being adjusted by a Chiropractor. Have you tried massage therapy or acupuncture or acupressure? I just had red light therapy done today and my face to help my TMJ. I have heard great things about red light therapy. What about pain management or nerve block? I have knee problem and I am getting a nerve block performed soon, as a way to delay the pain and delay a future surgery. I would check into other Dr's and do research on different Dr's at Mayo or Cleveland Clinic, if you are open to traveling for treatment or closer to you. Sorry to hear you are struggling! That has to be so tough to deal with. It sounds painful. I hope you can find something that works for you. I have no idea if any of these treatments will work for you, only you trying it or checking into first, would determine if you are a good candidate for your condition.
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1 ReactionI am going to be going to a pain clinic and see pain management specialists near me — but that is for my legs, not my shoulder. It doesn’t really hurt anymore — my shoulder hasn’t been in its socket for over two years, so my body has kind of adapted. The real issue is that my arm has very limited mobility now, so I can’t do basic things like wash or brush my hair. I also need to use a wheelchair and smart crutches because of a separate condition with my legs that required multiple surgeries. Since my arm is the way it is, using my mobility aids is difficult and often painful, which makes me less independent. I end up needing someone to push my wheelchair because I can’t manage it on my own.
My physical therapist recently recommended a doctor who has experience doing shoulder surgeries for people with Ehlers-Danlos and other hypermobility disorders, so I’m hoping to see her soon. Right now, though, I’m dealing with femoral osteomyelitis in both legs and preparing for my ninth surgery. I’m actually in the hospital at the moment—I’ve already had surgeries seven and eight during this stay, and I’ve been here for 41 days so far.
So as you can imagine, my shoulder can’t be my focus right now. I mostly wanted to hear other people’s experiences and perspectives so I can start forming a plan for what to do once I’m finally out of the hospital.