I have had primary lymphedema for six years this time around.  I was fortunate in that the first time that it reared it's ugly head, it went into remission about a year later.  I was reading the thread here and it seems that massage therapy (which they like to call manuel lymph drainage) is the only form of relief that people in upstate NY are getting. 

There is a doctor in Austrailia that has had remarkable results using an electrical stimulation device to reduce swelling in lymphedema affected areas.  Unfortunately, the machine is only available  to clinics and hospitals, as it does not have FDA approval on a home model yet.  The cost is $6000. 

Has anyone heard of a therapist in our area using electrical stimulation?  Perhaps if we start asking these people for it, they will see it as an investment and someone will actually buy one.  The squeaky wheel gets the grease, after all.

The problem with manual lymph drainage and the bandaging practice is that my legs are so large due to the fluids, that I can't get my pants or shoes on to go to work once they have the bandages on.  It just isn't practical for me.  I have to work to pay bills.  Disability puts you at poverty standard, so that is not an option.

To me, the definition of manual drainage would be to have a drain in put in your legs and the excess fluid removed that way.  Hell, the fluid comes right thru my skin pores, as it is right now.  It couldn't be that hard for them to put some sort of a drain in you, in a sterile environment, to relieve the pressure.

Sarah-

maris_38 suggested I get some info from you about De-bulking.  I have been on this board before, but I'm mostly on the DS board. 

Please see question about de-bulking surgery.

I'm not near goal yet, but I do have quite a few surgeries ahead of me, and it doesn't hurt to do a little homework befoe the time comes!.

Sorry - I haven't.  You might try asking Sarahlicious - I know she has much more severe LE than I do and is extremely knowledgeable.

Best of luck!

Has anyone on the LE board ever had de-bulking surgery, or contemplated it?

I haven't been able to find a whole lot about it, but thinking ahead, when it's time for reconstructive surgery, I may need it.

All  most of my weight is carried below the wast, and the back of my left leg has a large mass that prevents me from sitting normally in a chair. I must sit on the edge,  unless it is a very deep chair, that will.allow me to sit evenly on both thighs.

So...de-bulking?  What do you know?  Where should I look?

Saw my Dr today and he said that my great sapheous vein is starting to show problems, the blood is slipping back down the vein in a certian point. He suggested that he laser the area affected, basically shutting down the bad area which will lower the pressure in my leg, hopefully, helping it.

Anyone ever had this done?

The good news is that he and his partner will write letters of recomendations for me getting WLS in the future. He said losing a bunch of weight permanently will be the greatest factor in helping my leg problem.