Massage Therapy and Lymphedema risk

grateful

This is more anecdotal than anything, but I did several things after my LX with SNB that I always look back on and ' wonder'.  My hand LE  began the day after  a chair massge and a salty bag of chips.

When it somes to LE, I say err on the side of caution.  It's a regret we live with forever/ can't unspeak the spoken word so to say.

I miss my massages, believe me, but I would really avoid this if I were you.

JMO.

God Luck !

Kira, I would like to know more about adhesions, what that feels like, what can be done? It's been suggested to me that may be the cause of my pain.



Binney, I would like to know more about what "breaking up scar tissue" involves....



I'm not sure if this is the right place to ask, or if I should start a new topic so I guess I'll just dive in. Long story short, I've never gotten LE yet, but since I knew I was at high risk (nodes removed, the rest radiated, bad cording for months) I met with an LE specialist during rads. She told me mostly stuff I knew from reading here, about prevention tips, but one thing she said was that I should never let anyone massage that arm. Fast forward a couple months, done with rads, thought all was healing, suddenly the pain & tightness & cording comes back as bad as ever. So discouraging!! RO insists on sending me to PT. First time not so bad, a little poking around in armpit, not too painful, showed me some slightly different stretching exercises, come back in a week. Ok. But 2nd time, yesterday, got a different person, she said she works with lots of LE patients so I figured she must know what's ok to do, right? She massaged the tight area much more, and harder, than the other lady did, frankly it hurt like heck, and she put me on an arm exercising machine for awhile which I also thought was a no no... But she's the expert, what do I know? Well this morning I woke up and the armpit area is quite sore and feels swollen. This has never, ever happened before. What should I do? There is no swelling in the rest of the arm, but it feels achy. I did nothing extra today, just my normal work. Should I do the exercises they assigned me or should I rest it until it feels normal again? I know, ideally I would talk to the LE specialist about it, but I had to work all day and now of course can't call her till Monday. Just hoping to get some input from those who may have had something similar happen.

Well she didn't say anything one way or another, but she was sure pressing hard on the area of the tightness/cording. It really hurt. I maybe should have stopped her but she said she works with lots of LE patients and what do I know?



I never imagined I'd get swelling the next morning, that's never happened before. It hurts, and that's not normal for me either. Nothing has improved, it's been 3 days. Is this how LE starts? I don't know what I should do now.

Jennie, do you mean you saw the LE therapist and she didn't say anything about the swelling you're experiencing? Or did you talk to the PT who did the massage that started this? You need help from a well-trained LE therapist, and sooner is better, so do see if you can get an appointment to be seen and possibly treated.

Elevate, stay well hydrated, take it easy--and please keep us posted!

Gentle hugs,
Binney

Binney, to clarify, I saw the LE specialist a couple months ago, when I was starting rads, because I knew I was at high risk what with the cording and the radiation of my remaining lymph nodes. So I saw her for a consult and baseline measurements and she gave me a bunch of info about things we can do to help prevent it (most of which I knew from reading here but still good to have it reinforced).



But after rads were over, the tightness and cording came back worse than ever, so the RO referred me to the PT place. The first session went fine but the 2nd was quite painful and the next morning the swelling was there. Since I never had swelling before it naturally freaked me out a bit!



I have talked to the LE lady on the phone, not the PT place. But no one has seen me, no. She asked a bunch of questions about where the swelling was, what it feels like, if any redness, etc. and said it does not sound like LE (whew) but I should definitely tell the PT lady next time I go, and don't let them massage it so hard that it hurts.



I just figured they knew what they're doing, and it would be ok. I've also heard people talk about "releasing" or "breaking up" scar tissue, which sounds painful but they say it's better afterward.... I wondered if that's what she was trying to do (she didn't say) and it definitely was not better afterward! In fact, the cording is more noticeable than ever today.

Cording is clotted off lymph and blood vessels--mostly lymph: check out this link

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

I think it was Kira who said that LE is called 'breast cancer's dirty little secret.' We'd all be better off if surgeons and oncs would just talk about this. The silence most of us are given on the topic is shameful because it sets us up for a nasty surprise.

Kayezzy, the compression sleeve is designed to maintain the reduction in volume, while the wrapping actively reduces the swelling.

Usually, a sleeve is paired with hand compression--a gauntlet or glove, here's an article about why you don't want to push swelling into the hand,

http://www.lymphedivas.com/comprehensivecompression.asp

LE is an expensive condition, with co pays for therapy and all the expensive gear, but one of the least expensive items are compression sleeves, they sell for about $50 on line, although a DME company will mark them up--much less expensive if you fit an "off the shelf" standard size

http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Armsleeves.asp

As far as needing to wear daytime compression for the rest of your life, that is something that varies between people and over the course of your experience: for example--some people need compression 24/7--day and night, while some women wear compression all day, all the time, and nothing at night--as they don't swell at night, other people will wear a night garment or wrap at night and get away with less compression during the day, and other people will just wear day time compression periodically if they're exercising or swell or are flying.

I found that when I first developed LE, I needed a lot more daytime compression. And when I took a job that involved more lifting and writing I needed to step up all my management for a while. Now, I wrap every night--although I've found that I can do a lighter wrap now, and rarely wear any daytime compression. But, give me a hot day, a lot of writing, exercise, and I'll put on my glove.

For me, I tend to only swell in my hand and forearm, so I have a custom glove that has "opera length" wrist, that goes halfway up my arm. I rarely wear a sleeve. But when I was at that job a few years ago, I needed a sleeve for a while.

When I first developed LE, it was in my hand, and that's my problem area. Initially I really struggled to find a glove that worked for me, and because it's in my hand, I have found that the custom night garments--jovipak and Solaris Tribute, aren't great for me.

What I'm tying to say is:

1) A sleeve is what you will transition to when you're out of wraps

2) The need for daytime and nighttime compression will vary by person and with each person depending on how good their LE control is and what stresses they're under

Keeping that fluid out of the tissues is KEY: fluid that stagnates in the tissues causes inflammation and fibrotic changes. So, the sleeve is important, and how long and how much you'll wear it will depend. I'd expect that at the beginning, you may be wearing it a lot.

Hope that answers the question.

Hang in there.

Kayezzy, check out brightlifedirect for the sleeves and lymphademaproducts for the bandages--they both have sales. Here are good sites.

http://www.stepup-speakout.org/resources_for_lymphedema.htm#supplies

Not for nothing, she marked up the sleeve 100%, it's what they tell you to do....

And, insurance does cover the sleeve. Just at such a low price that she would maybe lose money if she took insurance:

For the future, get a script from a doctor for compression garments and get them from a fitter, and you usually have to pay 20% copay on the insurance price, which is discounted. And most insurance covers 2 garments/6 months.

Straight medicare doesn't cover garments, but medigap insurance does, and when I would see women whose insurance didn't cover garments, when I worked at the rad oncs', I have them get measured or buy one at the marked up price, and then if they didn't have insurance, I'd show them how to order them from one of the sites above. The savings is huge.

I like brightlifedirect because they'll take garments back. Many other companies won't. Check out return policies.

Kayezzy, so much to learn about a topic we never wanted to have to know about, but once you do, it pays off in quality of life and control.

Glad it helped.