Aug 22, 2006 05:07PM Binney4 wrote:Wow, Dianne, what a cheery atavar! Did you take the picture yourself?
You know, the things you're describing could be either surgery side effects or lymphedema (LE), and it would be really helpful to know which. Seeing as how so many of us have had difficulty getting accurate diagnoses from our doctors (because LE is not taught much in our medical schools or in nurses training -- don't know why not), you might want to insist on an evaluation by a well-qualified LE therapist.
There is as yet no state or national training standard for LE therapists, so anyone with a week-long "quicky" course can hang out their shingle. So what you're looking for is someone who has had at least 135 hours of specifically LE training beyond their OT or PT (or MD or RN or MT) certification and at least a year of experience in treating it. Here's a web site with links to list of qualified therapists by geographic area:
If you see an LE therapist, she (or he) will also be able to get baseline arm measurements for future reference and teach you about prevention guidelines, skin care, and prophylactic LE massage. All good things, whether it's LE or not. You're right to be concerned about this, as LE is certainly possible after any chest/breast surgery, including prophylactic mastectomy. (My surgeon assured me I had nothing to worry about where LE is concerned, but I now have LE on both sides -- hands, arms, axilla, chest, and back.)
LE is staged (like bc), so if it's LE, the earlier you begin treatment the better your outcome. And the more likely you are to avoid serious infection or further tissue damage.
Sorry to take so long and not even answer your question! Please do keep us posted and let us know what you discover.