On our home web site Lymphedema People and in the groups I'm on, there is one subject that seems to come up from time to time. That is on whether or not to have these "debulking" surgeries. For our newer members, that is where the leg is literally split open and all the fluid filled tissue is scraped out.
I absolutely urge you all never ever let any doctor talk you into having this done for your child.
I'm going to share a post I put on Lymphedema People in response to someone who wanted to know exactly what the complications of these surgeries are:
Been meaning to post on this.
I had three debulking surgeries done on my left leg in 1971, 72 and 73. The one I had is called the Thompson's Dermal Flap surgery. In this the leg is cut from above the hip all the way to the big toe. After it is debulked, a flap of skin was folded into the muscle, under the theory that it would draw fluids into the deeper lymphatics and be carried away.
So much for theory and trust me the scars are the least of our worries.
Here are some of the complications I have encountered.
1. Massive, permenant nerve damage. Parts of my leg are so nerve dead you could literally put a knife into and not feel it. Other parts are so sensitive that even to touch it feels like your digging into it with a shovel. If my knee itches, I scratch my thigh.
2. The swelling will return - Can you imagine trying to have MLD with this kind of nerve damage? And because the leg is so disfigured, even wearing compression garments is a challenge. So when the swelling returns you may well be stuck with it.
3. Fibrosis - mind you both legs have lymphedema. But it is the one that I had the debulking surgry on that is a complete mess and write off. It is like a chunk of granite. Ulstrasounds just bounce of it. It really hastened the tissue hardening.
4. Infections - because of the hardening of the tissue, infections have become almost uncontrollable. Forget oral antibiotics when they hit. The oral ones simply are unable to penetrate adequately the tissue. Bacteria go into wonderful little hardened areas where they are safe. My infections are now only controllable (notice I'm not saying curable) by intense IV antibiotics.
Even as I sit here, I am on them yet again. Last year they had to install a chest port because lymphedema started in my left arm and my veins are shot from so many IV's.
Another thing about extreme fibrosis is that it eventually starts crushing your blood veins and arteries, which also sets you up as a prime candidate for a blood clot. Mind you, because of this a clot is going to be almost impossible to diagnose because no radiology test is going to penetrate the leg.
5. Skin changes - Even an elephant wouldn't want the skin on my left leg. Despite the consistant use of lotions, it is terrible. I now have extreme plaque formation and lots of papillomatisis.
6. Here's the scariest one and one I have bunches of questions on. My first type of lymphoma started in that left leg. I had a 1 1/2" spot on the back of the calf which turned out to be mixed B cell lymphoma.
This was treated with eight weeks of daily radiation, which did further damage. It was also a crap shot because there is another cancer associated with long term lymphedema. If you combine extensive fibrosis, infections and radiation you become a prime candidate for something called lymphagiosarcoma (Stewart Treves Syndrome) The average time from diagnosis to death is 6 months. Itis not stopable.
For the lymphomas, chemo was immediately ruled out. Chemo drugs are meant to destory tissue...can you imagine what would happen if chemo drugs filled a leg that was not able to eliminate them? Not a pretty picture.
7. Skin grafts - I had to have several skin grafts to close up areas where the skin didn't heal, but instead died. One of those spots was the size of your hand and it took using skin from a cadaever to "seed" the subcutaneous tissue to close the wound.
The surgeries are also brutal. Each one was a nine hours ordeal that took 8 - 10 pints of blood. Honestly, between you and I (LOL and the internet) the way things are now with the safety of the blood donations in question, I wouldn't even think of doing it.
One of our other members was talked into having one done last year. bacHis experience has been the same - the surgeries really caused him much grief.
So all in all, I say run from these and any doctor who proposes it.
The best, most effective and safest treatment is manual decongestive therapy.
Hope this answers questions.