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Topic: Massage compliance?

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

Posted on: Apr 23, 2006 10:59AM

Binney4 wrote:

Hi, all,

I sure don't want to encourage slouching where LE care is concerned, but realistically it's not always possible to find the time (energy? motivation?) for a full self-massage. When I shortcut, I tend to concentrate on whichever arm is acting up at the moment. But Darleen and I went to a support group meeting last week where a U. of A. LE reseacher was speaking. One of the things they're studying is the effectiveness of massage, and all the parts of the massage. They did find that the full massage (neck and groin nodes, body, then arm) is the most effective way to do it. Then they looked at whether just doing the arm would work. It did practically nothing. Finally, they looked at just doing the neck/groin/body part without the arm and --ta-da! -- that was almost (but not quite) as effective as the full massage.

Sooooo -- looks like if the time is short, the part to do is the node clearing and chest/side/back whatever, rather than the stupid swollen limb.

Conclusion: nothing about LE makes any sense at all. Aren't we lucky to have researchers to uncover this craziness for us?!

Other research news: In Belgium they're working on determining if there are genetic links to the development of post-bc LE. That would help explain why somebody has 67 nodes removed does cartwheels with her grandkids and never gets LE, while someone else has a single node removed, sits on silk cushions all day and watches her arm blow up like a blimp. Maybe some day those at extra genetic risk will even have preventive measures they can use to avoid LE entirely. (YES!!!)

Also, one of their therapists down in Tucson is using custom compression garments (plus massage therapy of course) instead of bandaging (which no one in the Tucson desert cares to do from about May to October). She teaches her patients how to take in the seam on their sleeve every two weeks, which increases the compression gradually and compensates for the stretching that comes from wear.

So there you go -- all the research results that are fit to print! Or at least that I remember. Darleen, have you got anything you can add?

Binney Log in to post a reply

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Apr 23, 2006 12:27PM DoreenF wrote:

Binney: This is really interesting and really GOOD to know.
I'm not always compliant with my massage routine (and mine isn't anywhere near as grueling as yours...). When I was taking shortcuts I really was primarily focusing on my arm and chest... I will modify my shortcuts based on the research info you've shared .. and will always clear the nodes & focus on the body if that's all I have time for - and skip my arm.

Thanks soooo much for sharing this info .. and for all that you do around here. You are such a wealth of information and you provide an unbelievable amount of support!!
Doreen
"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto. Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Apr 23, 2006 02:27PM azdarleen wrote:

Binney, I think you did a great job of putting all the information together that we heard Wednesday night, I can't think of anything that you left out. It was very interesting meeting and so much information.I sure like the idea of a short cut, I'm still having a hard time learning how to do the arm massage, half way my left hand and arm get tried.( the good one)
Thanks for getting the information out, it sure is great to have you on our team.
Darleen
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Apr 23, 2006 02:59PM cowgirl wrote:







I really think Binney ought to write a book.
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Apr 24, 2006 11:30AM andys wrote:

Binney, I find this very interesting. The first le therapist I went to did full massage, but she only taught me the neck, underarm, groin, clearing of chest and back - she didn't teach me anything about doing arm massage. The second therapist did teach me a full routine. Like everyone else, I do cut the routine short (a lot), and thanks to how the first therapist taught me, I always do the full body clearing, just like you were told the other night and skip the arm. Maybe the first OT knew more than I gave her credit for.

Thanks for sharing the results of the meeting
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Apr 26, 2006 12:19PM Jennifer wrote:

My last PT also told me this about the neck, groin, affected side and back. If I massage these first then I clear the path for any fluide in the arm to move. I can add the arm but not to do the arm first.

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May 1, 2006 03:58PM bhull wrote:

Hey Ladies,

My therapist never showed me how to do the massage! She did do the massage that you are talking about (groin, neck, arm, chest etc..)

She showed me how to do some very simple stretching type excersizes to do with my head, neck, and arms. Which are supposed to help get the lymph system flowing again.

However, I find it really doesn't help very much.

Where could I find out how to do this full massage that you are talking about. I think if I did this it would help my hand/arm/chest LE greatly! Are there any books, pamphlets, handouts, or websites with this massage routine and how to do it that I could find to read up on?

Any help would be great! I really don't want to go back to the therapist I had been seeing last Spring.

~ Barb
"I am not lost. I am exploring. Life is an adventure worth exploring!" Dx 4/2003, IDC, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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May 1, 2006 04:26PM Binney4 wrote:

Hi, Barb,
There's a book called "Lymphedema, A Breast Cancer Patient's Guide to Prevention and Healing" by Burt and White. Your library might have it (the Second Edition is better than the original). They describe the massage technique, but only for women with a single side affected. If you've had bilateral surgeries then you shouldn't direct fluid to the opposite armpit. In that case, you need a really experienced therapist who can help you with the chest LE as well. The National Lymphedema Network ( www.lymphnet.org ) also has a video of the arm massage routine, but again it's not for bilateral. I'm not sure why your therapist stopped short of teaching you self-massage, but that's not standard practice. The more we're taught to do for ourselves, the more our lives are back in our own hands (swollen or otherwise!)

Hope this helps some,
Binney
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May 3, 2006 06:04AM bhull wrote:

Thanks Binney...I will try to locate that book. Also, I was doing a search on the web. I found a link that showed a simple message technique to remove lymphfluid from the breast (www.bodymechanics.net/subpages/breast.htm). They even have a little mainstreaming video to show you the technique. I wonder if this is like the manual lymph drainage message but only for the Breast? I really have a lot of pain issues with this one breast and would love any relief I can find.

I have LE only on one side (arm - mild) and in one breast (same side - not mild). I had lumpectomy with Sentinal Node removed after chemo and before rads. I hear now that rads. can damage the lymph system as much as having lots of lymph nodes removed. I just wish that I had followed the warnings they tell you about - but, I didn't know about the rads. damage...And I thought heck, I only had one node removed...I don't have to worry! And then I broke my leg and used crutches for 3 months - which gave me the breast LE (why didn't somebody tell me not to use crutches with LE!)

I will go get a copy of the book you suggested - maybe I can get some relief that way!

Thanks, Barb
"I am not lost. I am exploring. Life is an adventure worth exploring!" Dx 4/2003, IDC, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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May 3, 2006 03:28PM azdarleen wrote:

Hi Barb,
I have this book, and I have really enjoyed it, has a lot of good information, and it is easy to read,The afternoon I got the book, I couldn't get my nose out of it.
Darleen
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May 23, 2006 01:36PM sherry7 wrote:

Hi all, I also live or am trying to live with LE in my right arm and trunk. My physical therapist that my insurance only let me see four times gave me an address to order a training video that PT's use. She taught me as much as she could while doing my treatments and said the video will fill in the blanks. Being a massage therapist, I feel that someone, anyone can follow this video well whether they understand the complexities of our bodies or not. Here is the web page for anyone who want to check it out.
www.healthclick.com
1-800-300-5512
the video is called "Patient self Arm Bandaging and massage" #V20-01
This video includes the breast work, chest and arm.
There is a sister video for legs #V20-02
I recommend that we all have this video, its great for my husband or daughter to check out if they ever need to help me or give me the treatment. I can do all but my back, thats where I need the help from someone else. Hope this help! I am ever so greatful for all the wonderful people in here who just want to help. Its great! Love and light, sherry
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 23, 2006 01:40PM 13moons-2006Apr16 wrote:

Biney,

You sure put up an interesting post. This stuff is scarry and everyone seems to scratch their heads.

Thanks for the info.
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May 23, 2006 01:44PM sherry7 wrote:

13 moons, I hope the post is helpful, we that have LE need all the maintenance help and understanding we can get. Please take care. Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 23, 2006 03:35PM Binney4 wrote:

Sherry, that's a great link and a wonderful idea. Do you have the video already? Does it deal with bilateral as well as single side LE? It would also be neat to share with a LE support group in your area, and would spark a lot of discussion I'd think. (By the way, some women use a new, light weight paint roller for doing their back, but it's really lots nicer to have somebody do it for you!)
Thanks!
Binney
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May 23, 2006 03:43PM 13moons-2006Apr16 wrote:

Sherry,

On one of your posts I read where you said the LE was such you could not do you massage practice. Not really knowing much about LE but kinda wondering, if you can do all of your nodes but the back, would there be any possible way to go to school a bit longer and get something in the LE field and just cater to those people? I really dont know what is required educationally for either, just a thought.
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May 27, 2006 06:35PM sherry7 wrote:

13 moons, we are on the same page, I am inspired to learn both forms of lymphatic drainage. I was just checking out the cost for the 135 hour programs. For me this confirmation that not all changes are for the worse. Good things do come out of bad. Thanks, Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+

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