Thank goodness I found this site.

Hypermobility Forum for people with Marfan, EDS: Surgery: Thank goodness I found this site.
Top of pagePrevious messageNext messageBottom of pageLink to this message   By Lady Patrick on Sunday, June 04, 2000 - 05:00 pm:

About 9 years ago, after many dislocations and partial dislocations of various joints, I went to a surgeon to see if I could get a shoulder wired in.

The result was that I was told the surgery would result in loss of most of the movement and use of that arm, due to my small bone structure. I was also diagnosed
with having been born with loose carraiges and that eventually all my joints (at least major ones) would also dislocate and I'd end up completely wired together. I
thought about knee replacement surgery after my mother got it.

When I discussed this condition with a new doctor, after moving about 3 years ago, I was told that there is no such condition. Dropped him right after that 2nd
interview. He misrepresented his character and beliefs at the first interview, and that's the only reason I went to check him out for the 2nd one.

Now recently I have gotten a new doctor after moving back near where I moved from. When going over my medical history, this new doctor ask matter of factly,
why haven't you gotten corrective surgery for that condition. I explained cause I've been on my own about it since it was diagnosed, and explained the one doctor
who said it doesn't exist.

He explained it does exist, and he knows this because two of his children were born with it, and both had corrective surgery for it.

He doesn't have the information paperwork for it, but knows the best surgeon around here for this. He suggested I search the internet and find the information on the
surgery.

I had just about given up after 5 nights of searcing and boom I found your site.

THANK GOODNESS.
I AM FEELING SO MUCH LESS ALONE, AND ODD RIGHT NOW.
I also have fibromyalgia, and several injury related problems. His news about the condition and now finding this site, is the first good news I've had medically in
10-20 years.
Have a great day. Even though I'm crying I am having a really good day.
Lady Patrick.


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