Anyone on the forum who has arm lymphoedema?

I have right arm lymphoedema after breast cancer surgery. I have nearly finished my two week mld massage. They have suggested using a tape to control some of the swelling has anyone used this tape and how good is it?

There are many on the forum who have lymphoedema of the leg which is more difficult than mine to control. Have not seen many on the forum with arm lymphoedma.

17 Replies

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  • Hi chris47 I have left arm lymhoedema after breast cancer surgery. It appeared in May 2007 after mastectomy in early April of same year. I had kinesiotape after surgery as I had 'cording' in the upper arm which is another bizarre lymph thing. It cleared up OK then achy bruised feeling began. I was not offered mld but wore a Mediven combined arm sleeve. a couple of years ago this changed to a Jobst arm sleeve and Sigvaris glove to control swelling in hand/fingers. I practise sld every night before bed, though sometimes its one, two, miss a few if I'm tired!

    Yoga and swimming have both helped to keep it manageable most of the time.

    Good luck with the tape

    xx

  • Thank you for your reply. I have my last MLD on Thursday and it has really made a difference and I find it so relaxing. When it comes to an end if you want any more I think you have to pay to go private. Not really looking forward to having this tape on but I will give anything a try.

  • I had mastectomy in 2005 and developed arm lymphoedema in 2006. MLD 2 weeks reduced this considerably and have continued MLD privately once a month ever since, in addition to wearing mediven combined arm sleeve. Lymphoedema has remained stable, it did rise to 13% at one stage but MLD practitioner has got it down to 9% and there it has stayed for some years. Swelling in fingers has almost gone. I do SLD twice a day, morning and evening in bed. It becomes a habit and I miss it if I don't do it. I walk a lot and play badminton and am generally active which I think helps the whole body. I am 76 yrs old and managing lymphoedema has just become a way of life. Am very careful wearing gloves for all chores and especially gardening which I love. The DVD produced by LSN is very helpful.

    Best of luck, it's up to you to look after yourself!

  • I have my last mld session on the nhs on Thursday is it very expensive to go private, it has made a difference and i find it really relaxing. I had a mastectomy in January 2012 and the swelling started 6 weeks later but other than wearing a compression sleeve it has taken until now for the mld treatment. I am 65 years old and ikeep active this time of year with my nintendo wii fit especially the tennis on the sport section it does make a difference.

    Thank you for the advice I was wondering how to fit sld into my day and you have solved that problem for me.

  • I have lymphoedema in both my legs and my right arm, but not through cancer. I have a sleeve to wear, but it is very limiting in movement, especially in the elbow joint, and it's a buggar to get on!!! XX

  • Yes I know what you mean about getting the sleeve on I bought an arm butler although it is easy to use abd get the sleeve on it seems to stretch them too much so they end up too long..

  • Hi Chris

    The LSN do a leaflet on taping - free if you are a member or only 30p if not. give the office a ring on 020 7351 4480 and they will be glad to help

  • I have lymphedema in both arms following a double mastectomy. I had a very bad reaction to the tape - my skin became red and inflamed. I have spoken to some people who used taping successfully, Try it out on a small area first.

  • Hi I have lymphedema in my right arm also after a mastectomy, I wear a sleeve and glove at all times except bed time it does help, I have not heard about the tape what does it do ?

  • I have had the tape on for several days it is under the arm , across the chest and back avoiding the scars. I think it iis supposed to work a little like a sleeve but on the body where you have compression to encourage the lymph glands. I wear a sleeve at all times other than bed times but is has not affected my hand.

    This is only my first lot but it has given me a lot of support under the arm which i hardly felt since having the tape on..

    Have you managed to get any MLD massage it has really helped me.

  • Hi Chris, thank you for your reply, I havent had any MLD only the sid, the problem is I do tend to miss a few nights I never know if I am doing it right., because of the pain in my hand I find it hurts to do the exercise so it puts me off doing it ,

  • I would ask if it would be possible to have mld i had 8 sessions on the nhs and it started to work after 2 sessions. They then show you how to do sld.. I asked what if it stops working and was told i could ring up and they would get an appointment to teach me sld again. There is a long waiting list from my initial appointment I have had to wait 6 months for the treatment but it was well worth the wait.but it can be managed

    The lymphodema support network also have a dvd which shows you in detail about sld.

  • I think that I have discovered a way to reduce the swelling due to lymphoedema but will like to have others try it to see that it really works. I started going regularly swimming in the hope it will help the swelling, and it did but just a fraction. I then decided to change a bit the way I swam breast strokes: I decided to thrust my arms in front of me in the hope that by doing so they will get the greatest massage possible. I noticed that my affected arm looked already a bit different after a few lengths. People who can't swim, can do these movements standing at the shallow end. I might look a bit strange by using so much force, but people might think I'm getting ready for the Olympics!! (:-)

    I would suggest the same for people suffering from lymphoedema in the legs. Pushing the water with the legs could achieve, hopefully, a great reduction in the accumulation of the lymphatic fluid.

  • Hi, I've had Kinetics tape on my breast as an experiment to relieve the fluid build up in the breast and arm. It works but the elastic can cause itching. I do wonder if there are dietary factors that could help reduce swelling.

  • Hi all and Rebec in particular , another way to help is to wear old sleeve when swimming as combined sleeve and water pressure together are helpful. I find swimming breast stroke is good if I pull quite sharply downwards after the stretch forward, rather than outwards.

  • yes i have left arm and truncel lymphedema for over a year. i have a lymphepress pump swell spots, sleeves, gloves ,ready wrap sleeve, and wrapping with bandages. nothing has been long term effective. now i am looking at solaris night sleeve hoping that will help. p t has used kinesco tape also. wish i could offer more positive input. i do mld ,execise,pump and bandage... what a trip but still hanging in there. all this is quite expensive out of pocket...and i have medicare and blue cross...go figure.....

  • Hi Joaniec, Not familiar with wraps, tape or pumps, it is 14yrs ago since I had Breast Cancer and I only got three sessions of physio, I went and above the bed where you sat there was a grid above with a large chain hanging with a handle on either side, you held these and moved your arms slowly either side up and down like climbing a ladder, the idea was to be able to get your arm stretching, " Walking the Wall" they called it, as I only had 3 sessions there my husband rigged me a makeshift one up at home , he screwed a wheel fitting to the middle of the flat part of a door frame and got a rope , a bit like a skipping rope only a bit longer, made two handles on either side and I excercised with that everyday until my arm was flexible enough to drain and to reach up as high as I could, although one arm looks slightly bigger than my other I don't have any problems with it now at all, Alas I wish I could say the same for my legs and feet,but Primary and secondary, its hard,