Hello everyone,
My PT Has a theory as to why my stage II lymphedema,(non pitting)progressed so quickly after removal of my staples and drainage tubes from my MND surgery. She and I think that my Lymphatic system was already damaged years ago. When I was in my twenties I went through periodic lymph node swelling and over activation from Drugs that were pushed though FDA vigorously to save countless lives from HIV/AIDS. This along with my Radiation only a few months before my surgery most certainly could have been instrumental in my stage III Lymphedema (pitting) and fibrosis spreading from my scare out further now reaching for my entire left side of neck spreading to my shoulder. No amount of lymphatic massage and full head compression garments and wraps seem to keep it in check. So I am waiting to see if my insurance will treat this as ( non reconstructive) Medically necessary to my well being. I know their is transplantation and redirection procedures. Any thoughts or Ideas would be wonderful. Thank you for your time. Shawn U.

Also, checkout lipodystrophy syndrome in HIV patients, which is an increase in body fat in the face, neck, belly, etc. There are meds for this, and other treatments available.

Yes Paul thank you for responding, Glad that are at home now, Your a tuff man.
I had some minor changes in where body fat decided where it wanted to be. My face was a quite gaunt at one point. and lost weight from arms and legs that seemed to go strait to my midsection. This went away with a change in meds. Sorry to be so drawn out. But thank you for reminding me about Lipodystrophy. I just hope that my insurance and my body can take such procedures. When I read that elephantitus of the head and neck was possible got to a really low dark point. But It is what it is and hopfully their is something. Rick and I are going to see a counselor so we can start to deal. And again Glad your back! Shawn U.

Anytime, I just remembered this myself, which could be a cause, contributer or may not be related at all, but at least is an area of interest. I heard of human growth hormone being used too, but with microscopic cancer, I don't know about it's use. Many conditions are rare, uncommon, and not likly to happen, but just reading them can cause anxiety, and does so with me until I read further and discuss it with the real doctor lol. Be well, and keep in touch.