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  #1  
Old Apr 14, 2007, 11:12 AM
ragtop77 ragtop77 is offline
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What is correct way to massage for lymphadema?

I developed lymphadema last fall after breast cancer surgery with lymph node removal and radiation treatment. It was only in my upper arm until radiation, then spread to my hand. I am wearing the glove and sleeve and bandaging at night, but don't see much improvement. I've had 3 different people tell me 3 different ways to massage the lymph fluid. How do I know what is right or wrong? My short therapy taught me one way, and I've met two people who do it differently. Any suggestions would be very helpful.
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  #2  
Old Apr 14, 2007, 11:56 AM
RaftingRita RaftingRita is offline
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This might help

The book "Living Well with Lymphedema" has a chapter on self-massage that includes detailed instructions and photographs on how to massage your arm. That might be helpful.

Have you checked in with your therapist recently? Have you asked yourself (or your therapist) these questions: Do your sleeve and glove fit properly? Are your bandaging properly at night? Are you exercising properly?

Good luck in finding a solution that works for you.

Rita

Last edited by RaftingRita; Apr 14, 2007 at 11:58 AM.
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  #3  
Old Apr 14, 2007, 12:13 PM
ragtop77 ragtop77 is offline
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Rafting Rita,
Thank you for your reply. I will look for the book. My insurance only covered a few visits to a therapist and she hasn't seen the glove and sleeve I have so I don't know if they fit right or not. They are painful to wear after a few hours. I'm doing the night bandages like she taught me so that's ok. Someone just told me not to massage up the arm towards the heart but into the hand, then wrap tight and release. That doesn't seem to help any. I was curious what others do for this.
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  #4  
Old Apr 15, 2007, 09:52 AM
ragtop77 ragtop77 is offline
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Who is the author?

Can anyone tell me who the author is for the book "Living Well with Lymphadema"? I'm trying to find it, but need the author's name.
Thanks
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  #5  
Old Apr 15, 2007, 03:53 PM
CHRISTINE CHRISTINE is offline
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Hi,

If you go to the home page you'll find links to all of the great information & resources available on the site. You can find more info on the the book by clicking on the link "Lymph Notes Books."

Living Well With Lymphedema by Ann Ehrlich, Alma Vinjé-Harrewijn, PT, CLT & Elizabeth McMahon, PhD

I agree with Rita, try to check in with your therapist. Your garments may not be fitted properly if you're experiencing pain. Did your therapist/certified vendor take your measurements and order the garment for you?

Let us know how it goes.

Christine
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  #6  
Old Apr 16, 2007, 02:44 PM
ragtop77 ragtop77 is offline
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Christine,
My therapist did take my measurements and the place she sent me to was going to order a special made glove for me, but my insurance wouldn't cover it and it was $225 so I went to a website and ordered one myself. The only measurement they asked for was around the center of the hand. It was still $156. I should have gotten the special one instead since the insurance didn't cover this one either. The therapist said I could stop back in sometime and show her what I got, so I think I should do that after talking to you and Rita. Thanks for the info on the book. I looked on Amazon and they didn't have it so I'll check the library. If I can't find it there, I'll order it from here if I can figure out how.
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  #7  
Old Apr 16, 2007, 03:18 PM
RaftingRita RaftingRita is offline
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Finding "Living Well with Lymphedema"

Go to this web address http://www.lymphnotes.com/order.php

Under the the second photo on the left side of LWWL on this page, it says," Order paperback from Amazon." Click here and this will take you directly to the spot you need to be on Amazon.

Good Luck,

Rita

Last edited by RaftingRita; Apr 16, 2007 at 03:20 PM.
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  #8  
Old Apr 18, 2007, 03:36 PM
ragtop77 ragtop77 is offline
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Thanks Rita,
I checked on Amazon.com and they didn't have it so I went to Barnes & Noble and they said it's printed to order, so then I went to the library and they didn't have it in our county but they found it outside the county and ordered it for me. I also ordered two more that sounded helpful from the library. At least now I know how to get to the right place on this website.
Thanks again,
ragtop
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  #9  
Old Apr 19, 2007, 10:54 AM
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Chuck Chuck is offline
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Lymph Notes book availability

Lymph Notes books are available in stock from Amazon.com, Amazon.co.uk, and Barnes and Noble.com. You should not have any trouble ordering these books.

You say above (April 14) that "Someone just told me not to massage up the arm towards the heart but into the hand, then wrap tight and release." I'm concerned that this advice could be harmful. Lymphatic massage is a specialized skill; please take advice and instruction from qualified professionals.

Best wishes,

Chuck
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  #10  
Old Apr 20, 2007, 04:12 PM
ragtop77 ragtop77 is offline
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Thanks Chuck,
I only did that two days and it didn't help any, so I went back to the way my therapist did it. It seems to help the most when it's wrapped for the night. The glove I have isn't comfortable nor is the sleeve. I have ordered the books from the library and if I decide after I see them that I need to have them for future reference I'll order them on the web. I went to Barnes and Noble and they could order the one I wanted, but they didn't stock it. I didn't think to look at Barnes & Noble online. Amazon.com didn't have it. I checked twice and didn't want to pay postage from the UK.
I'll take your advice and stick to what I know until I get the books and see if I'm doing it right.
ragtop
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  #11  
Old Sep 19, 2007, 12:37 PM
dixiechick dixiechick is offline
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Jobst makes the sheer compression stockings and panty hose . I'm new to this so I hope it's okay.
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  #12  
Old Sep 19, 2007, 05:21 PM
ragtop77 ragtop77 is offline
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Thanks dixiechick. I originally got a Jobst sleeve and it's much nicer material than the next one I ordered, but it won't stay up. I tried the glue and that doesn't work either. The one I found attaches with velcro around the bra strap. They told me that the lady who made them quit so I won't be able to get another one. For some reason my insurance won't let me pay the difference to get the one with the silicone strip. I don't know if that would work better either, but I'd like to try it. I ordered the custom glove since I wrote here last and had to send it back twice and finally gave up and returned it. I did get the book on Living Well with Lymphadema and it helped a lot just learning more about it all. I went back for a couple of follow ups with my therapist too and she said I was doing a good job because my numbers were smaller than before so that's good. I hope you don't have it and if you do, I hope you're doing well.
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  #13  
Old Sep 21, 2007, 01:36 PM
dixiechick dixiechick is offline
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Thanks for your reply. It's nice to know there are others who are in the same boat. My lymphedema is in both legs.
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  #14  
Old Sep 21, 2007, 03:12 PM
ragtop77 ragtop77 is offline
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Dixiechick,
I'm sorry to hear you have it. How did you get it? Have you had it long? I've had it for about 9 months now and have found if I am faithful to do the massages, it doesn't get worse and has actually improved a little. I wish you well.
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  #15  
Old Sep 21, 2007, 08:59 PM
dixiechick dixiechick is offline
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I was diagnosed last November and had never heard of lymphedema before that. The doc seems to think mine originated from my 2 C-sections years ago and possibly a fall last May. I have been faithful to diet, compression pumping 2 hrs a day and of course the dreaded compression stockings up until about 6 weeks ago when I fractured my elbow. It was all most impossible to get the stockings on. My last check up, on Thursday, indicated the fluid level had gone up so I have 30 days to get my levels down or I'll have to start therapy again. Believe me, that's not what I want.

Take care.
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  #16  
Old Sep 23, 2007, 04:38 PM
ragtop77 ragtop77 is offline
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Dixiechick,
I'm so sorry to hear that! It's a lot easier for me with it being my left arm and hand than both legs and with a fractured elbow in the mix! I was diagnosed in November too. I've had two bad falls since then, one just 3 weeks ago at my son's and hurt my arm and hand both times, but it's healed up ok with no complications, thank God. I saw a contraption in a health magazine that's supposed to help people get on compression stockings, but I don't know if it's only for knee highs or the long ones. Maybe you could ask your therapist if it would help you. It was in Dr. Leonard's. I'm sure they have a website. Maybe you could check it out. It's like a frame you put the stocking on and then put your foot down into it.
Good luck and I hope you heal fast.
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  #17  
Old Sep 23, 2007, 06:59 PM
dixiechick dixiechick is offline
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Thanks for your help. I'll check into it.
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  #18  
Old May 3, 2008, 11:09 AM
Debbie G Debbie G is offline
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Swelling/ massage

Hi - I'm new to the forum, but have logged on with concerns that I have many years out from breast cancer. I use my compression sleeve but I was told to put on the sleeve first thing in the morning? Is that still true? I am also in the process of trying to book a lympatic massage at one on the centers that is on the web site at a certified center. I am lucky to live in the st.louis area in Missouri so one is close. I will pass on the information I get after my appointment. Also I am trying the massage because after being 18 years out from Chemo and Radiation I have had cellulitis 2 times in thed last 18 months. DebbieG.
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  #19  
Old Jul 27, 2010, 04:11 AM
LymphedemaGirl LymphedemaGirl is offline
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I realize this post is old, but I am going to reply anyway. Longing for info about self-MLD myself, I have searched the net for videos showing how to, and I found this:
http://www.nwlymphedemacenter.org/vid_mngmntA.php
Not much, I wish some expert would put a video outthere where the teqnique is thoroughly shown with close-ups so one can see what is going on.
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  #20  
Old Jul 29, 2010, 07:36 AM
Vette Girl Vette Girl is offline
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Thank you for the information on the videos. I watched them and did learn a little more about the lymph system. What was shown reaffirmed what my therapists have trained my husband and I to do. I really appreciated your passing it on. I do have a question; do any of you with leg lymphedema get aching pain in your hips and legs? Sometimes it is almost a gnawing ache.
Vette Girl
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