Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Oh my goodness that is wonderful that you have found someone. Can you write me off list and tell me who it is. I am facing just the same thing but want to put it off for as long as I can. While I am, I would like to have an opinion from someone who has seen EDS and is willing to do something. Most of my doctors are out of Hoag as you would imagine they are the first to cut and think later. oops. sorry. generalize they are not ALL like that ! But anyway, my symptoms are obvious it is just that I have not found a surgeon who will admit to cutting on the hip of an EDS patient. You are near me so the drive would not be too bad for a good surgeon. Debbi Re: Fesability of doing NIH study trip alone In a message dated 8/23/2004 6:11:05 PM Pacific Standard Time, jetskideb@... writes: Liza~~ What kind of hip surgery are you having? Debbi Total Hip Replacement, both joint and socket....right side. Apparently the " you're just old " pain in groin & knee for 15 years was from the bones of the leg trying to fuse themselves into what's left of the pelvis. Four doctors in 15 years missed it....5th one watched me hobble into his office and spotted it as hip involvement at once. Many have refused to touch this case with the severity of the bone damage and the EDS combined, but I found a wonderful ortho recently who believes in all the alternatives I've used over the years and is ready to FIX me for good! Quote Link to comment Share on other sites More sharing options...
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