Debulking Surgery Lymphedema
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From: http://www.lymphedemapeople.com/thesite/lymphedema_surgeries.htm:
Lymphedema Debulking Surgery on a 2 year old
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.
"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."
Pat O'Connor
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