EDS Shoulder-Joint Surgery

Hello,
I am a 20 year old male, and have some form of EDS. My family has type 3 EDS. I have never gotten a true genetic test to confirm it, however my father and his side all have it. I have had two orthopedic doctors diagnose me with it and the insurance company never saw a need to order the test. ALL THAT ASIDE. I have had a very hard time with EDS. I have torn my right hip, torn my patellar tendon, and my left shoulder sublaxes and dislocates more times that I can count. It was so bad that I was medically discharged from the Army. I rehabbed my shoulder but it has reached a whole new level of instability. It sublaxed for 5 days straight and nothing caused it, it merely just fell out of the socket. I put on a tshirt and dislocated my shoulder and most likely separated it and possibly tore stuff. My Orthopedic doctor is extremely concerned seeing as how I cannot even do daily life with it. I get an MRI on monday and meet with a surgeon to discuss surgery. Do I need to go to specialist in this country who knows EDS and shoulders? Has anyone gotten this surgery, did it help? I have to do something and I do not know what.

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That happened to me on both shoulders. It just hung out of the socket for 3 months on my right arm, and 5 months for my left. I had surgery on both of them. I had the surgery on my left shoulder in August and my right shoulder was repaired 2 months ago. I was casted on both for 8 weeks after. I ended up with massive tears in both along with nerve damage. I just got out of the cast on my right shoulder a couple days ago. My left shoulder still subluxes, but its nothing near how it was before. My right shoulder is still tight from surgery, so it's too soon to tell how that will turn out. I don't regret the surgeries at all though! Just make sure you have a doctor that's familiar with EDS. I'm 15 and have type 1 CEDS. I hope that helped!

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Thanks! glad to hear the surgery helped for you. Have you experienced any scar tissue damage and pain yet?

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My son and I both had surgery for dislocating shoulders. His was about 4 years ago. His shoulder is doing great. I have had 4 surgeries. Two of them from and regular orthopedic doctor that didn't last at all. They were 35 years ago. The third one was by a shoulder specialist. That surgery lasted about 20 years. The last one was by the same doctor about 10 years ago and my shoulder is really good. I never had surgery until my shoulder was coming out every day. I have found that you have to go to the really good hospitals that have specialists in different joints. I have never regretted surgery. Good Luck!

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Hi Kubballfan,
I am 56 with EDS 3 and have all sorts of dislocations and subluxations. I just wanted to share info from my geneticist at Cedars Sinai in LA, when my new, small town Rheumy was insistent that unless I had an actual "genetic test" showing positive, then he wasn't sure I had EDS3. Sigh. Life in a small town with uneducated doctor but unfortunately they exist everywhere. Here is a cut and paste from the geneticist (2nd one I saw) who I consulted with for both confirmation and as a resource as to "what can I do now" for physical/medical help. When I emailed the geneticist about what my Rheumy here in small town Montana said and asked if they can test my samples they took for their DNA study to confirm type 3 here is what he wrote back:

EDS hypermobility type is a clinical diagnosis – meaning it’s diagnosed by a targeted physical exam and a detail medical and family history. There is no good genetic testing for EDS hypermobility type since the genes that cause it still haven’t been discovered. That’s why we collected your blood, so it could help us in discovering new genes (however we still haven’t found any). So, that means there’s no genetic testing to be ordered!

So, if an expert , given your history and your family history says you have it, trust them and don't worry about needing genetic confirmation for hypermobile type (3) since there is no real test.

All that aside, I feel for you! At 56 I'm still subluxing shoulders, popping clavicles, vertebrae etc. I have chosen to never have surgery because most EDS folks (that I've experienced) have not seen significant improvement on soft tissue surgery, actually, most seem worse off. I've been using prolotherapy on my latest knee tears/damage with good success but insurance won't pay for it. I would say your best resource is to do what I did, find one of the few hospitals with Connective Tissue Disorder clinics such as Mayo, Cedars, Baltimore, etc. you are having multiple probs and I can tell you at 56 after a LIFETIME of chasing doctors for help/info, the best thing I finally did was go to Cedars (to a connective tissue disorder clinic) and find MDs that actually study our syndrome! They gave me great resources while i lived in the LA area (docs, PT, pain mgmt). Good luck!

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I have a lot of internal scarring but it surprisingly hasn't caused many problems yet!

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I am so sorry that you are having all this trouble! It really is hard to do anything with an arm just hanging at your side half the time. I have had 3 surgeries on one shoulder. We started with an E-tac which was a complete waste of time. It was completely useless in about 3 months again. Next I had the capsular shift on 3 capsules. It lasted around a year as it was also soft tissue only and just stretched out again. Last I had a bristow-laterjet procedure and it has worked well now for around 10 years. In the last one, bone is moved and used to secure the joint. I didn't lose any range of motion but I did wait so long that my shoulder "learned" to hurt all the time. Now that it is repaired, it still wants to hurt badly at times. It is getting a little better each year and forgetting that it hurt 24/7 but my only regret is I waited around and did tons of unhelpful (in my case) PT and let it get that far. I hope that you will find what you need to get the job done and not allow RSD to become an issue too.

God bless,
Lexie2

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