On My Way to Lymphedema?

I met with the LE specialist at Evanston Hosp. (Dr.J.L. Feldman, world-renowned) last week. He measured both arms & wrists and found no increase from the pre-op measurements my BS’ nurse took as baselines for the prophylactic compression sleeve & gauntlet she ordered me to wear for exercise and flights >4hr. He said from measurements that it doesn’t appear I have arm LE (the diff. bet. R & L is attributable to my being a “rightie”); but from symptoms I described (finger swelling during a couple of 8-hr flights while wearing the compression stuff, arm stiffness and fullness while at >1 mi. high in Taormina, Sicily, and forearm soreness and a palpable knot for a few weeks before & during my trip upon extension & rotation--the latter indicative of mild temporary cording) he diagnosed pre-clinical LE so that Medicare would pay for my PT sessions and my supplement would cover some of the co-pay for the glove he prescribed in lieu of the gauntlet. He also said my giant breast seroma is just a seroma, aggravated by radiation. I had 2 sentinel nodes and 2 “tag-along” nodes biopsied, all negative and none w/in the radiation field.

Had my first LE therapy session today, during which I was taught MLD for both arm and breast--even though the seroma is not LE, it is still lymph fluid which might be “trained” to drain away gradually and reduce the seroma to manageable proportions (unfortunately, I was also ordered to replace my bras with ones a band and a cup size bigger, to ease pressure on the tissues--and to keep wearing bras or support camis for sleep. I noticed a small painless bruise on my forearm, in the same spot as the prior cording symptoms, though I don’t recall bumping or otherwise injuring the forearm. The LE therapist says that’s usually a souvenir of cording having suddenly resolved itself--some patients feel a “popping” though I didn’t. She also told me to do MLD on both sides, since part of the goal is to shift fluid to the “good” (i.e., non-surgical) side for eventual excretion--and my groin as well as upper & lower abs, which might be almost as much fluid as fat.

fralallso, I sure hear you on that. This is a difficult diagnosis, for sure, but please know it gets better--honest! As for being a klutz--this is a steep learning curve and can be frustrating at first. Practice makes it possible. Give yourself room to take this in. You can do it! Tell us how we can help.

Here's an article about the emotional challenges of lymphedema that has helped a lot of the ladies here:

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

Go easy on yourself--gentle hugs,
Binney

Fralaliso, I have LE in my strongly dominant left arm and hand. And I do a lot of typing/writing for work. Wrapping is not as hard and intimidating as the websites make it look. It's a cosmic nuisance, to be sure, but it does work, to the point that I don't have to do it most of the time!

I took a break from wrapping/sleeve to heal from radiation (kept going with the glove) and am about to go back. I'll be honest and say I'm not always compliant as when I'm working I must have full range of motion in order to type. So I'll just leave the stuff off when I work--freelance so I set my own hours--and put it back on later.

So far, so good. But the best and most important thing, as ChiSandy suggests, is to find a lymphedema specialist who knows his or her stuff and whom you're comfortable with. Knowledge is power! And good luck.