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Topic: Weird lymphodema

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 21, 2006 08:36AM

rockongal wrote:

Hi all!

Just a brief summary: Right mast with 12 lymph nodes removed. Chemo & rads and then medi-port removed. BC recurrence on my left breast and lymph nodes (brain too). I never experienced LE on my right side but have on the left. My right side feels fine but the left has pain and swelling. Pain pills help but otherwise the onc, although she asks about it everytime I see her, has yet to refer me to LE clinic. Right now I am wrapping my left arm several times a day. As with others, AMs are best & PMs worse. I also have numbness with my pinkie and ring finger while the other 3 are basically fine.

I plan to insist upon LE referral next time I see her but in the meantime does anyone have any exercises suggested by their LE therapist that has helped strenthen arm? My arm is so weak at times that I can barely pull my pants up after going to the bathroom.

Weirdly I am able to still wear my ring on my left side although I switch it if I feel fingers sweling. The most swelling in directly underarm and top part of arm.

Thanks so much for any help! It really sucks that not only do we have to go through all this chemo/rads but now LE and all its side effects.

Bless you all!
Kim Log in to post a reply

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May 21, 2006 11:43AM Binney4 wrote:

Oh, wow, Kim -- I hate it that you're hassling with all this! By all means do get a referral. Here's a web site that lists fully qualified LE therapists in your area: . Click on the Therapist Locator and follow the links.

You really don't want to do exercises until you have compression garments fitted, which will be after therapy has reduced the initial swelling. Not sure what you're wrapping your arm with, but unless you've been taught to use short stretch bandages in such a way as to apply gradient compression to your arm, you may be doing more harm than good. Unfortunately, you are not alone in having a doc who's slow to refer for treatment, so you probably will have to make a bit of a fuss to get the referral promptly. You'll find that the right kind of therapy (special massage, layered gradient wrapping, and exercises while wrapped) will relieve the pain within a short time.

I sure wouldn't wait until the next time you see the doc -- get on the phone tomorrow and get the ball rolling. Getting care now can save you not only this on-going pain, but the threat of spontaneous infection as well (not to mention fibrotic damage to arm and hand tissues.)

Keep us posted,
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May 22, 2006 05:51AM rockongal wrote:

Thank you very much for the advice. I have labs today and I'll talk to someone about this.
Take care,
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May 22, 2006 06:00AM mkurtzman wrote:

I have lymphedema in my left hand but it is ot to bad. I go twice a weak to a physical therapist that specializes in lymphedema massage. It is important that you use a person that is certified in lymphedema treatment (massage). By the way the numbness in the fingers may be neuropothy. I have neuropothy in my fingers and feet. mk

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Jun 3, 2006 04:27AM acgw wrote:

I jut posted on another thread regarding lymphedema treatment by a certified therapist. In brief, a certified therapist is not always available to a woman with lymphedema. A therapist who has been trained in complete decongestive therapy (a minimum of 35 hours)can do a good job as well. I am a physical therapist, have recieved training in CDT and find that I get good results for my patients.

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