Massive Localized Lymphedema On My Leg

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Massive Localized Lymphedema On My Leg

Postby KnockOut » Fri Apr 01, 2011 8:07 pm

Reposting this from the leg forum....

Here's my story. I had weight loss surgery in July (my starting weight was 557) and have lost 160 pounds! I have a VERY large lump on the inside of my right thigh that I always thought was just cellulite. However, after researching online I realized it was a lymphatic pseudotumor. When I went through the procedure of getting the surgery I visited a lymphedema specialist who told me that I would have to do "a few treatments" and that combined with weight loss would "get me back to normal in no time." Well a few months after the surgery when I had fully recovered I went back and spoke with a different therapist. She basically told me I'd have to come in and get wrapped and massaged for 1 1/2 hrs 5 days a week for anywhere from 2 weeks to 6 months, in which case I wouldn't be able to wear a shoe or pants, and then we would move into the maintenance phase. Well there's a multitude of problems with that solution...

A) My job would never allow that kind of time off work

B) My co-pay for this place is $50 per visit, so $250 a week is not possible in any way whatsoever

I left there feeling more hopeless and lost than I've ever felt. I just got married to a beautiful woman in November and this thing on my leg is the only thing preventing me from having an idyllic life.

I saw the episode of that show Heavy where that guy had his lump (which was very similar to mine) removed and it gave me a little hope, but a lot of the online research I've done about surgical removal seems to recommend against it. I need some answers please.

Here are a couple of pics of the lump....

This is a frontal view with shorts on


And this is taken from the side while I'm sitting in a chair

Posts: 10
Joined: Fri May 14, 2010 6:42 am

Re: Massive Localized Lymphedema On My Leg

Postby carljspeed » Sat Apr 02, 2011 1:21 pm

Dont get discouraged.

Part of the problem is, we deal with medical continent, that at large, is rather uninformed about our disease.
Tom said that his surgeon has performed many of these surgeries.

I know he cant really be online right now due to media silence for the show, but I'll try and get back in touch with him and get some information about his surgeon, or invite him to the board so he can give his testimony and can answer questions after having it done successfully.
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Joined: Sat Mar 19, 2011 10:02 am

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