Lymphedema Debulking Surgery on a 2 Year Old

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Lymphedema Debulking Surgery on a 2 Year Old

Postby patoco » Wed Jun 21, 2006 7:10 pm

Lymphedema Debulking Surgery on a 2 Year Old

Lymphedema People

http://www.lymphedemapeople.com

..............

I have long been an outspoken opponent on the use of debulking
surgeries for lymphedema patients. In my article Complications of
Debulking Surgery, I shared my own experience with this proceure and
the long term effects on my left leg.

In our Children with Lymphedema Group, we recently had a discussion on
this and one of our members sent the following post. It is one of those
rare instances when I am left speechless. I feel such anger and sadness
in what has been done to a prescious little two year old girl.


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"I have not read what others have posted yet because I read emails in
order of first received, but I am guessing that you are getting a lot
of responses "against" debulking surgeries. Not having any
experience with these procedures myself, I communicate with a mother
whose 9-year old daughter is now unable to walk (probably for life)
because of repeated surgeries (including debulking) that she has
undergone at the insistence of doctors who promised things they could
not deliver. I actually don't know what to say to this poor woman
when she tells me that her daughter's leg is permanently oozing
lymphatic fluid and that she changes the dressings on her legs every
few hours because they are soaking wet.

She tells me that she cries every day and blames herself for inflicting soooo much pain and agony on her daughter. She said that before the first surgery (age 2) her daughter was able to walk. Up to that point, her daughter's LE had not been treated properly (MLD, bandaging, compression, etc...) so her right leg was pretty big and she was desperate to try anything that was a cure or fix, but 6 years later and many, many surgeries to correct each previous one, her daughter is permanently using a wheelchair and has to be home schooled because her leg is worse than she can even explain to me.

After so many surgeries (who only knows what combination of different surgeries she has had), her right leg/foot is now shorter (doesn't reach the floor) and her foot is turned completely in (not facing straight out) so she can not plant her foot on the ground. Oh and her foot is also completely limp (apparently they must have damaged muscle and tendons and bones too). So what I'm trying to say is to be
very careful about what a doctor claims to be able to do because you
may end up making an already difficult situation completely tragic. If
debulking surgeries worked, all LE patients would be in line to have
them done and there would be no need for the tedious (but effective)
treatments such as MLD and daily bandaging and compression garments.

I would love to be able to offer Sophie a quick fix, even if it entailed
a surgery and recovery, but any reputable therapist will not even humor
you by speaking of these procedures. Please use your "Mommy
judgment" and don't rush into anything. If you speak Spanish, I'm
sure this mother would be willing to speak to you and offer some advice
as well. Unfortunately for her, hind sight was 20/20 and now she
regrets her decisions every day of her life."

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Pat
patoco
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