lymphedema surgery anyone?

I found the references that we found for step up speak out, from Pat O Connor:

Pat 

Vixen, you may be new to this forum stuff, but you're doing just fine! You sound like an old hand to me!

The "a" word your looking for may be anastamosis, possibly? Basically means connecting two things together that weren't connected before. They do a lot of microsurgery at MDAnderson, even lymphovenous anastamosis, which means connecting a lymph vessel to a vein. (That's not a well-thought-of procedure, though, because the pressure of the two systems is different.)

But what it sounds like they're proposing is a lymph node transplant, with lymph vessel anastamosis, which has been done in France for awhile. The results have not been well followed, so we don't actually know what the outcomes are. I wrote a post about it awhile ago and I'll just copy it here, since it's long:

"Last August at the National Lymphedema Network conference I had a chance to meet with one of the surgeons who's doing this surgery in the U.S. and attend a round-table discussion that she led. Like you, bygrace, I was concerned that removing lymph nodes from the inguinal area might cause LE in the legs or genitals. I was also concerned about the vast unknowns that surround this sort of experimentation with a body system that is so little understood. While I know experimentation is necessary to move knowledge forward, we of course hope it will be done in a way that's careful and watchful and attends to both the short and long-term side-effects and any surprises that may happen along. Sadly, this surgeon is NOT concerned about potential problems, because she apparently doesn't believe in them. And she is decidedly not interested in doing research to follow the patients she operates on in order to learn if problems develop.

This surgeon told us that she went to France briefly earlier this year to learn the technique from Dr. Corinne Becker, who has done it on 1500 patients. According to her, Dr. Becker has published a study on 25 of these women, of her own choosing, and found there was LE improvement in most and complete remission of symptoms in a few. The outcome of the other 1475 patients have not been studied, so we just don't know what happened.

I asked, Is Dr. Becker going to study them?

She said, No, Dr. Becker doesn't have time to do that.

I asked, Is anyone else going to find out what happened to the rest of those patients?

She said, No, there's no one else in the world qualified to analyse those results who has the time to do it.

The doctor also told us that she will not be doing any investigations to discover whether the transplanted nodes actually function, or whether the improvement in LE comes from another mechanism, such as the stimulation of regrowth factors that is a result of any surgery.

Finally, I asked her what sorts of possible problems she might anticipate in the long term that could result from this surgery, to which she replied, "There are none."

In other words, our safety and long-term quality of life are not a subject these surgeons have the time or vision to consider. And equally as disturbing to me is the fact that they are telling us that the sooner we have this surgery after we develop LE, the better our chances for complete "success" -- which of course eliminates any possibility of trying more conservative Complete Decongestive Therapy first.

I want this surgery to work like a dream. I'd like it to be the answer we're all hoping for. But I also know that the potential for disaster exists alongside the hope. It seems only reasonable to me that the doctors who will eventually be making considerable profit from this surgery should take the time to monitor the effects of their work in order both to assure our safety and to further the understanding of the lymph system and lymphedema. I'm not at all reassured that that's what's happening.

And it's us bc-related lymphers who stand to lose. A lot.

I'm writing this calmly, but I'm not calm about it. When patients hear it's been done on 1500 patients they think, "Safe!" And when they hear that the "success" rate is somewhere around 90%, they don't even ask "What does success mean in this case?" We're vulnerable, at a place in our lives where a promise of wholeness is almost irresistible."

I am NOT a doctor, or any other sort of medical person, so take that into account. First off, I want to say I like Bahons suggestion a lot, of asking for a list of patients who've had this done, and then choosing for yourself which to contact and ask about their outcome. But be sure to ask how long ago their surgery was, as we don't know anything about long-term complications. If they were all within the last couple of years, that won't tell you anything about longer-term problems.

Your mention of progressive functional limitations and extensive radiation damage makes me wonder about Radiation-induced Fibrosis (RIF). Has anyone mentioned that to you? There's a study in progress at the U. of Iowa to try Trental and Vitamin E to reverse RIF, if the time between radiation and start of the meds is not too long. Also, hyperbaric oxygen chamber treatment has some success with early RIF. The other possibility to ask about is Radiation-induced Brachial Plexopathy. I hope your situation is a whole lot less complicated than that, but it helps to cover all the bases and know exactly what you're dealing with before deciding on surgical options like these.

Vixen, I'm really sorry for the difficult journey you've been on, and the rough decisions you've had to make along the way. They never seem to get any easier, do they? Please stay in touch with us here and let us know what you discover. I for one will sure be thinking of you as you sort through all these options.

By the way, your docs should be able to supply you with the few studies that have been done on node transplant, or Kira or Otter can find them for you (they're both magic!) There's an article here about how to read studies, since they don't always say what they seem to:

http://www.stepup-speakout.org/Research_on_lymphedema.htm

Big (((((HUGS!))))), and prayers for a clear decision,
Binney

bump