hkcs at gte.net
Tue Aug 3 08:07:09 PDT 1999
Indeed this is a rare procedure, but it has been done successfully from a
surgical point of view. From what I've read, IMHO it's the preparation
and rehab. which makes it a worthwhile procedure to consider. I found a
few references in the medical literature when I was researching stuff for
my site. The one I have handy is:
"Prosthetic Rehabilitation of a paraplegic with Bilateral Hip
Disarticulation and Partial Pelvectomy"
Arch Phys Med Rehab Vol 57, Oct 1976
This article contains a number of other references which they can look up.
Besides psychological preparation, (which is paramount), it appears that
the most important thing to consider is how to get the person sitting up,
some type of sitting socket, as well as an excellent PT program to develop
upper body strength. This all takes a LOT of planning for a good outcome.
Although prosthetics can and have been fabricated for this condition, they
are usually for cosmesis and occassional standing. The energy requirements
are enormous, and most will find that a wheelchair is more practical for
mobility and function. I have a rare few CP's in my "databank" who have
done this. Have your person e-mail me privately for their names.
My website www.hphdhelp has recently been updated, and now contains one
contact, a bilat HD. See the site support network for his e-mail address.
Harry is an amazing guy, and incredibly well adjusted. I'm sure he would
be happy to help.
Also, check with the ACA databank, they may have others. Congenital
bilateral lower limb amelia would be a similar situation. There was an
article in "In Motion" Jan/Feb 99 about a child with this condition, and
Paul Prusokowki, then at Shands in Fla was involved. E-mail Paul at the
O&P list. I know there are others.
If there has been no futher contact or follow-up, I would question if the
original request for peer support was valid or a prank. I've noted a
simialr crank msg here not too long ago.
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