HI-

I have a lot going on here, and I hope I don't confuse anyone reading my post.

I have  a very large area of hardened lymphedema tissue on the back of my left thigh.  It interferes with sitting, and is extremely disfiguring.  My doctor send me to a lympedema clinic for treatment, but the doctor told me I was too fat.  Unfortunately, this hospital is the only one that has a lympedema clinic. 

I was just told yesterday that I need a left knee replacement, and the doctor knows I'm scheduled for a duodenal switch in February.  He says before he can replace the knee, I will need to have reached my weight, and have the loose skin on my lower body left from the weight loss reduced ( I am a super pear shape; I carry most of my weight in my hips and legs).  The doctor says he could not get adjust the knee with the big lump of tissue sitting there,  It does currently interfere with sitting and bending my leg.

I am currently disabled, and am on Medicare and Medicaid (with a ridiculous spend-down)

I have nowhere to go, but I'm afraid that Medicare will not pay for t he body lift and removal of the hardened tissue, by deeming it cosmetic.  

Suggestions anyone?


 

I am needing some feedback from Pump users. I have been able to use just Manual lymph drainage and a compression stocking to control my Lymphedema. But On Thrusday I am having a complete Hystroectomy and they plan on removing my Lymph Nodes. I am looking at a different form of treatment after my surgery as the stockings are okay to put on even though they can be a challenge I have come to live with the daily chore. My husband will gladly do it for me but I don't want to add to his work.

So I am wondering who has used the Pumps and would it be something that would offer less ease than the compression stocking??? 


 

I met with Dr. Herman today in East Stroudsburg.  Here is what he said:

1.  Because I have had no infections or cellulitis flare ups I must start out by going for 3 mos. of Lymphatic Massages 3 times a week and wear compression stockings.

2.  I must stop smoking for at least 3 mos.

3.  I must get my iron count up, he suggested that I double up on my iron supplement and take my peri colace to avoid constipation.

4.  If I can't get my iron count up, I will need iron transfusions.

5.  Once my iron count is up, he will do a debulking surgery.  This is where they open up the area and remove the diseased tissue and excess skin.  Then they do a skin graft to close the area.  This would be done in several surgeries.

6.  I would have to document to the insurance company all problems and need for this surgery.

7.  Only if the surgery is unsuccessful and inflamation begins will the insurance company consider the lymphovenous fistula procedure which is done only as a last resort.

8.  He suggested a medial thigh lift to get rid of most of the sagging skin which is draped over the lymphedemia.

 

So, my last cigarette was at 9:25 this morning, and now I have to start the process with my primary of finding a location to do the massage treatments and get this all documented.

I have not had the diagnosis of LE made.  I have edema and thought I might be able to find out some info from this board. 

I still have edema.  OK some days, worse others.   Hopefully, dropping #'s with surgeyr will help all diseases present and also help the swelling.

I am going to an endocrinologist at the end of this month for evaluation.  She might be able to help me clear up the problem with the swelling.

I have heard a little about this new surgery on the Men W. LE Yahoo newsgroup forum, but it doesn't sound all that promising, frankly   &:-/)    I'd be very careful about what claims the surgeon makes and ask to talk to some of his patients that have actually had the surgery to see how well they are doing and how far out they are, before I would made the decision to undergo it ..

 (btw,as to skin removal, "debulking surgery" has gone out of fad long ago, since it proved to eventually cause an exacerbation of the LE in the areas operated on,) 

  The true solution appears to be stem cell research.  Early animal trials have shown that animals given stem cells form new lymphatic nodes, ducting, etc.   Hopefully it will work that well in us!

  Good luck on whatever you decide to do .