[LMB] Shot in the dark: Dupuytren's disease
quietann at gmail.com
Wed Jan 24 14:22:40 GMT 2018
Hi all... I'm reading, just not responding much.
Anyway: has anyone here had experience (or had a friend/relative) with
Dupuytren's disease (DD? It's a weird connective tissue issue with the
hands, where the body basically makes scar tissue in the fingers and hands
for no particularly good reason. In more severe cases, contractures of the
fingers develop, and the fingers bend down and ultimately cannot be
unbent. There are a number of risk factors, Type 1 diabetes in my case,
and surgical trauma (see below, if I have not lost you already.) It appears
that my main diabetes "complication" is weird connective tissue problems
like frozen shoulders, trigger fingers, DD, etc. Which is a lot better than
kidney failure or blindness or ... but still...
It's the latest in my hand saga, which I probably have not mentioned here.
I've had two trigger finger operations, and the last one, in April, on my
right pinkie, apparently set off the DD, and then DC in my right ring
finger. My hand surgeon says it's one of the most aggressive progressions
she has seen. I've basically had one and a half useful hands since then. I
have DC in both hands now, but more severely in the right (surgical, and
dominant) hand. So I had surgery on my right hand for that in December, and
it now appears that *any* trauma to that hand will just make it worse. In
other words, the surgery didn't work well and might have made things worse.
Treatment options are pretty bleak at this point. The absolute most
extreme would be amputating my right ring finger -- but again, that's
surgical trauma, and one of the weird things about DD is that surgical
trauma can set off disease in the *other* hand (as happened last year.)
Another option is super controversial -- targeted radiation therapy of the
affected areas, using about 1/5th the dose that would be used for cancer.
It's controversial enough that the people who've had it and believe in it
have banded together into an almost cult-like group. Beyond that, I don't
have many options as my disease is too severe.
(Hand surgery is a b*tch, BTW... I do not recommend it, and I especially do
not recommend having 25 stitches in one's dominant hand...)
quietann at gmail.com
aka "The Accidental Jewess"
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