Truncal Lymphedema

Pam, if you're wearing a bra, you had less surgery than me! An onc found my truncal LE while examing my scars that wrap around my back. I have it on my left side. The PT has taught me how to do MLD so I do it while I drive to work and back. For some strange reason I have none in my arm. Go figure! But she has done the measurements of course.

I agree with the poster who said to get a pump. I've only read good things about them.

I was told not to wear anything at night for compression....are you wearing Spanx with your PT's knowledge or did she tell you to wear them?

Gentle hugs.

Good morning, all, and welcome to bc.org, Pam!

I'm so sorry to hear you're fussing with the nasty insurance on top of everything else. I do have bilateral truncal lymphedema (though not IBC), and I sometimes have flares like you're describing. You mention MLD -- do you mean self-MLD, and if so, do you have someone who helps with your back? It can be really hard to do that alone, but it's an important part of adequately clearing truncal swelling. Have you identified a reason for the flare? Weather? A new activity? A change of diet (saltier)? It's important with increased swelling to be sure it is not being caused by either blood clots or new cancer activity, so checking those things out with your doctor is a necessary first step (also a scary one, and I'm sure sorry about that -- ugh!) MOST likely, of course, this has some other less worrisome cause. Another "trouble-shooting" strategy that might help is to make a single appointment with your lymphedema therapist to have her check your self-massage technique -- very easy to lose track of even a small part of that and end up being less effective. (And maybe it's just me, but especially when I get frantic about flares of swelling, I tend to get way too forceful with my self-MLD -- the extra pressure actually shuts down the lymphaticts, which are delicate and just below the skin. So soft music, an effort to relax before beginning self-MLD, and reminding myself to be kitten-petting gentle all help). 

Not sure why you're on pentoxyfylline unless you have additional concerns due to extensive radiation? It's not a standard lymphedema treatment, at any rate, and long-term use has some worrisome side effects. 

Not all pumps are created equal. The only one currently in use that has substantial research to back up its safety and efficacy is the Flexitouch, made by Tactile Systems. It's gentle and uses an approach that mimics the massage technique of MLD. There are other brands that now claim to do so also, but they've been remiss about doing the research to back up their claims. Most pumps are actually NOT good. They "wring" the fluid out of the arm, driving it into the trunk with too much pressure and without adequate preparation of the trunk and groin node beds, all of which results in fibrotic build-up at the top of the arm and axilla. And that in turns actually worsens the lymphedema over time. No pump, even the Flexitouch, is a substitute for any of the other aspect of lymphedema treatment, and even with the Flexi some therapist oversight is essential (sigh!) Still, you might want to request a (free) Flexi demo, which they'll do in your home or at your therapist's office. You can contact them from their website: www.tactilesystems.com

If you would like to appeal to your insurance company for better coverage, the National Lymphedema Network has an Advocate who can give you information and help with appeals. His name is Bob Weiss and his email is LymphActivist [at] aol.com (replace the "at" with the symbol).

More information about truncal lymphedema (and a lot of ideas for compression options) here:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

I hope some of that helps, Pam. Hugs and prayers,
Binney

Pam, truly the only pain relief I've found for the truncal lymphedema is to reduce the swelling. For me, nothing else seems to touch it. Since you've already had MLD training, the on-line videos at Northwest Lymphedema Center may be helpful for review (I never recommend them for self-treatment without a therapist because the actual massage routine should be individualized to take into account surgeries, scars and specific areas of concern.) They're here:
www.nwlymphedemacenter.org

If you don't have anyone who went with you to therapy to help with your back, some women use a new paint roller (think Home Depot) to help you reach that area. (Do not spend too much time trying it out in the aisle of the hardware store, though -- I got some really funny looks!)

One way to spend the next month waiting for insurance coverage to kick in is to look over the site listed above for finding a well-trained therapist. Call or email them all and ask about their experience with truncal.

It's hard to believe how much we have to do for ourselves with LE, isn't it?! The mind boggles!

Barbe, we all need those reminders often because the stress and frustration can really undo everything we've learned! Soft music, maybe a scented candle, peace and quiet...aaaaaah!

Be well,
Binney