Hello all - thanks to the admins for this valuable resource. I hope I can trouble this lymphedema hive mind with a question or two.
Briefly - I am 43, and morbidly obese. I was over 500lbs as of a year ago but have lost about 100lbs through diet and exercise and am 400 or so now. I have what Google tells me is called a "Massive Localized Lymphedema" on my left thigh. It more than doubles the girth of my thigh and weighs at least 30lbs, like having a big bag of wet sand strapped to the inside of my leg.
It became really noticeable about 2 years ago, and I've tried conventional approaches to lymphedema - compression bandages, massage for drainage, etc. with temporary and minor relief at best. My internist referred me to Dr. Charles Chandler of UCLA Hospital to consider surgical removal of the lobule, and he and his colleague Dr. Charles Tseng (a plastic surgeon by specialty) both feel that surgery is warranted and likely to have good results. The physical therapist I work with, Mary Rosenberg, has expressed reservations regarding the amount of anatomy beyond the skin and fat I would be losing, and whether I would be setting myself up for a worse recurrence given the loss of lymph drainage from the lower leg into the body.
I was hoping to tap into your experience in these matters, as neither Dr. Chandler or Dr. Tseng have done this specific thing before. They are undoubtedly competent and certainly confident, but my confidence would be dramatically improved if I had a chance to talk to someone who had actually performed or been through such a surgery before anyone attempts it on me. The people here at UCLA in the Bariatrics and General Surgery depts can't seem to offer me that.
I'd love to hear any comments you might have, and whether any of you have had similar surgeries and what the outcomes have been. If you have any wisdom here, I would be genuinely grateful for anything you might be able to offer - even if it's just the name of someone here in Los Angeles or elsewhere with more direct experience of the surgical resolution of MLL.
Best regards and many thanks for reading this far,
---- Andrew