What is Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary fro...
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I have a twenty one year old daughter with EDS type 3 who has had 5 left shoulder stabilization's consisting of 4 procedures to tighten the shoulder and one they called a basket wrap procedure and 1 on the right. The left shoulder is now continually dislocating and sits in a subluxed position. The orthopaedic team are now saying there is nothing more they can do for the R shoulder and want to fuse it to prevent it from coming out again and they are basically bulling my Daughter to do this procedure. The problem is that if she does not have the fusion operation they will not treat her dislocations and put the shoulder back in. She is not able to re-locate her shoulder herself due to one of the Surgeons creating a lip to try to keep the shoulder in. Does anyone know of a procedure or anything new that we could suggest to the Orthopaedic team.
Posted on 08/27/09, 11:08 pm |
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i'm so sorry to hear about your daughter, i have the same issue with my shoulder except my doctors refuse to touch my shoulder saying it would do nothing to help, so i understand your frustration, my shoulder is a chronic dislocated useless shoulder an thats in the orthopedics words since my shoulder is constantly dislocated and i now have severe nerve an muscle damage to it, there is one thing that has been suggested to me an that but it would be an experiment an that would consist of using a donors muscles an tendons to help with our joints as they dont have the eds an as we know eds does not help of course this has only been done to one person on their shoulder ever an as far as i know it worked for 5 years which in my eyes is something to be proud of. other wise all i can suggest is maybe try an find a brace that might help support it, i use to have one but my shoulder got use to it an dislocated in it, no point using it an no point going to the ER to get the shoulder in any more as my shoulder just drops out again as nothing is holding it in place. i'm here to talk if you wish. hugs. 
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and one more thing dont buy in to that fusing thing, thats a last resort, if your daughter still has use of the arm and can still do things with it like brush her hair an wash it then please dont do it, my orthos said its a last resort for me and only when they have tried everything, oh also we're busy trying botox in the surrounding muscles maybe ask the ortho's about that? i found it eased off some of my pain an able to use the arm more as well sleep on the shoulder for the first time in years. so ask them about botox an get them to test muscles an that, it may be that a muscle is in spazzam an that, who knows with eds huh?
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Best advice we got was warm water exercise to try and build stronger support muscles.
I am with kazzawahya on fusion.
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oh yes i tried the water exercises but it never helped for me since my shoulder is to far gone an every time i tried to do an exercise my shoulder either ripped something or dislocated more. an then the physio said "we cant help you" an left me at that. but my gp insists i should go running. dont think he knows a lot about eds, lol, needless to say i left him after that an found a new wonderful gp an the w hole practise is in on my care incase i get injuried an my normal gp is not around then the others can help. thats another thing. get a support system going with your doctors an family an friends. you'll need it. i found i needed it an i still dont really have that system but it does help
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