Just wondering how many EDSers out there with or without overlapping features of varying types have been dx'ed with the above cervical issues, are struggling with loss of neuro. function, and are considering or have had fusion surgery in the cervical area either to preserve function and/or to prevent paralysis? Also for those who haven't done the fusion and have AAS, have you managed to avoid the worsening through other means, including diet, exercises (isometrics) etc. etc.? The only support group I can find online for AAS is for DOGS, and this is makes things a bit difficult!
After my dx's from Dr. Henderson to have three surgeries, I am trying to choose the right path with the goal being that of the best chance of longevity and quality of life (49 years old- sort of Type III with manifestations and symptoms of IV and I, including early family deaths from CVAs etc., general weakness in thoracic/blood vessels, bleeding problems in past and present). We are from MA, and since there are no real studies or stats on this, I've been scouring studies on RA, which show patterns of survival as better with C1-C2 fusion and/or with chemo etc. but with the few studies on EDS showing poor outcomes over time; trying to weigh options. Would love to talk to EDSers from both camps, surgical and non-surgical. I am also very interested in talking to EDSers about the presence of auto-immune symptoms, particularly issues with overreactions in histamines, as there are studies in RA that show that chemo, which dampens immune response, can sometimes reverse AAS (but I feel so strongly that EDSers need to see some studies out there re: prognoses with and without C1-C2 fusion surgery!)
We're not sure if I will be even cleared for surgery (most docs are running the other way), but I do want to learn as much as possible.
Thanks so much to all.