In a message dated 3/19/2004 10:34:10 AM Central Standard Time,
Hello, my name is Brian and I too was born with AMC. I have been reading some
of the messages as they are posted, I recently just signed up with this AMC
Group and find it very interesting to hear how great everyone has chosen to
deal with their situations. I have had 14 surgeries and 5 broken bones due to
this decease. I am now 38 and am running into my body starting to run down due to
wear and tear.
I think this is sort of a typical situation, especially with us older
generation AMCers. I've had 26 operations but is you compare us older generation to
the younger generation they don't have as many operations but have a lot more
PT. The only time I got PT was when I was learning how to walk again after an
operation. Then it was for may be an hour or too. That's it. How many of us
older people had splinting? I bet not many. And we didn't have AFOs either!
I had a session of serial casting done when I was an infant but after the
surgeries started I didn't. Thankfully doctors realized that PT and splinting
could keep us from surgeries.
I only have had 1 surgery that I thought was unnecessary. It probably was
necessary but it was poorly done. I had a muscle biopsy done on the front of my
thigh. The doctor used the wrong thread and it left a large thick scar about
the size of an index finger. Everyone would point to it and ask what it was.
I think that is one of the reasons I will be buried in the only dress I'll
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