How do you learn what you're doing?

CarolynVM

I just finished radiation yesterday.  Three weeks ago my RO sent me to PT for lymphedema in my breast.  I was surprised that there is also swelling in the upper arm.  So far I'm getting massage and exercises three times weekly.  One of the therapists said I should get a prescription for a sleeve but she's the only one who mentioned that.  My breast is still swollen and painful but it is far better.  My RO suggested a sports bra.  It does help but it hurts the raw tissue under my breast.  That should improve, of course.  The PTs have certificates but I don't remember where they're from.  They seem to know what they're doing but the two I've had use completely different techniques.  They both feel good so maybe it's just personal differences.  They all tell me that if I had stop the lymphedema from forming scars, I won't have lymphedema problems.  I sure hope that's true.  This is a great board for people who know what they're dealing with but for people like me, it's pretty advanced!  Any baby steps you could offer?

kira66715

Carolyn: it's a steep learning curve, and we all felt lost at first.

A few of us from this forum created a website to try and answer the questions:

1) the first is about how to treat lymphedema: since the vast majority of how you manage it will be self management, you need the "tools" to keep it under control--the therapists should teach you how to move the fluid out of the breast and arm--self manual lymph drainage--and it's a light massage, just moving the skin, they should give you well fitting compression garments for the chest and arm/hand and tell you when and how to use them, and address what to do if you swell at night--which involves special night garments and wrapping. You need the tools. Also what to do to reduce your risk of further swelling and getting an infection=cellulitis. And therapeutic exercises and exercise guidance for the future. A big task, but break it into managable bits and it can be done. Ask all the questions you need.

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

2) The special issue of breast/truncal lymphedema:

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

3) How to check out the credentials of your LE therapist:

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

The issue of scars: lymph doesn't flow through a scar, but you can't undo the scars you have, although some scar massage can loosen them, what I believe they are referring to is fibrosis--when lymphatic fluid stagnates in the tissues, it causes inflammation and the tissue gets fibrotic and that's how lymphedema progresses. And you don't want it to progress. That's why early and good and thorough treatment leads to the best outcomes.

Clear as mud?

Please keep asking questions.

carol57

I'm a little suspicious about being told that avoiding scar formation avoids LE, or that releasing scars fixes LE. I know that scar release can help with LE symptoms, but it's more than scar tissue that leads to LE. Carolyn, I hope you'll double check the credentials of those therapists.

Kicks

See  a CERTIFIED Lymphedema Therapist - not someone with just a PT.

CarolynVM

Carol and Kicks, from what I can see, there aren't any certified lymphedema therapists within 50 miles of us.  My RO recommended the people I'm going to.  When I get back to Michigan I'll be able to use a certified therapist.  Kira, I think you're right that it's fibrosis they were talking about.  I've had so much pain from radiation wounds that I'm taking a lot of pain killers.  They make me kind of loopy.  LOL

RosesToeses

Carolyn, I'm certainly no expert, but I can say I found my current LE PT because the LE PT who diagnosed me recommended her to me (both are LANA certified, but the one I see is closer to where I live). It might be worth a call to one of the ones who are too far away just to find out if they know of anyone closer.

CarolynVM

That's a good idea, Roses.  Thanks.