kinesio tape and compresion sleeve

Cindy, your garments don't reduce swelling, only MLD and wrapping do. The garments only help maintain the loss that comes from proper treatment. So I'd suggest you sit down with this therapist and the NLN Position Paper on treatment, and have a heart-to-heart about why she's not wrapping and why she's seeing you only twice a week. And maybe about her training as well, so you have some idea of where she's coming from. Might be time for a second opinion!

The National Lymphedema Network Position Papers on Treatment and on Therapist Training are on the right-hand side of this page, near the bottom:
http://www.lymphnet.org

Lymphedema is life-long, so we need both the initial treatment and the self-care skills to keep it in check. Keep us posted on how you're doing!
Binney

Another idea for easy donning over tape is a Ezy-As:
http://northernliving.tv/ezyas/view.php?ser=6

Binney

Thanks Linda Lou

Binney knows a lot of stuff!! Thanks for all your advise..

I forgot to mention the Juxta Sleeve. Check out their web site. just type in juxta sleeve

I have had in my drawer until my cellituits attack!!! Now my arm is in better shape than before the attack!!! I use a regular guantlet with it.. it comes with a glove and other stuff!! It is easy and very affective!!! My insurance paid for it. You have to have the PT measure your arm and hand for it!!

Binney I was going to PM you and ask you if you had heard of this???!!! Have you!! It is really good

Cindy, keep us posted, please. Wrapping "if you want it" is unacceptable as a protocol for LE treatment (as you obviously already know!) That's like telling my daughter, who has diabetes, that she can inject insulin if she's feels so inclined.

Actually, there's a therapist close to where I live who has that same attitude -- her version is, if it's too hot, don't bother to wrap or wear garments. Only, when it's hot is the worst time for flares. Needless to say her patients are not doing well!

I'm really sorry that it's up to you to insist on good treatment, and to have to struggle to get it. Tell us how we can help!

Hugs,
Binney

Cindy--Sometimes you have to direct the treatment--it is NOT okay that they're not addressing your night time swelling, and you should know how to wrap--it's a powerful tool in managing your LE.

Their focus may be your shoulder, but using kinesio tape, IMO is something to add to the basics to CDT: which is MLD, wrapping, exercises and compression garments.

I would suggest bringing in the NLN guidelines for therapy, and having the therapist review how she will address them, and insist on being wrapped.

Here are the NLN guidelines for treatment--they're on this page:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

And on our treatment page, we link to them and a handout created by one clinic, that can be used as a reference:

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

It's so hard to "tell" the professionals what to do, but it seems that more often than not, we have to, in order to get the care we need.

There was an article by Guenter Klose on self managment--just a page. I'll bump it.

Let us know how it works out

Kira

Cindy, that can mean a weekend wonder course. Try and find out what school trained them: I looked my people up using therapist locator:

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

And, unfortunately, even "qualified" therapists can deliver bad care: NO with pitting edema in the entire lower arm, IMO, you should be getting the full body MLD--clear the trunk, back, extremities and then be wrapped to clear that fluid out. Not just some arm stroking and kinesio tape.

There have been so many posts about inadequate treatment lately--you should read Becky Sharp's post on the grrrr thread: I wrote to one of the heads of the 4 major schools and told him about it. For what it's worth....

Clearly not the best they can do.

Kira