I am going to try it now. Im suffering a little with it today (I have been washing windows).
It doesnt take a lot to start it off.
Swelling in my hand was the first I noticed. And then I too was dx with lymphoedema last Dec just 7 months after removal of all lymph nodes.
I do wear the sleeve sometimes. But find the most effective treatment for my hand is to rest it on a cushion preferably two at night when watching tv for about half an hour.
I also seem to swell up! when on car journeys - as a passenger. Again I take a cushion with me and this seems to prevent the problem.
The idea is to raise the arm to heart or above heart level to encourage lymph to drain back down.
I have found (apart from on here) support from professionals for lymphoedema very limited and it is very much trial and error and managing your own symptoms.
I hope you find the cushion tip beneficial too.
I have an appointment on Monday with my new GP clinic. I will definitely mention it there.
At the moment I have private medical insurance, so I may have some options. Laser therapy sounds interesting. Not sure about the transplants though!
I thought by having only 5 lymph nodes removed, I would be ok. Ah well... Id rather have lymphodemia than cancer!
I had replied to you pm. Thank you, this is so interesting.
What a bummer for you. I would say get a referral as soon as you can; don't be fobbed off. May, when you see yur surgeon is far too long to wait, especially as the waiting list for lymphoedema clinics can be also very long in some places.
Lynni is right, the sooner you are seen and given some help, the easier it will be to manage.
Current methods of treating or controlling lymphoedema are fairly primitive, so many people do end up with sleeves.
Newer techniques include Low Level Laser Therapy, Hyberbaric Oxygen Therapy and Lymph Node Transplants, but these are not normally available on the NHS.
If you want to pm me, I can e-mail you some information about Transplants and the Laser Therapy.
You may find the BCC booklet on 'living with lymphodemia' helpful, it can be found by following this link:-
I hope you find this helpful.
Sam (BCC Facilitator)
Thank you for replying. I seem to have a lot of upcoming appointments at the hospital, including a mammogram next Friday, but I am going to see my surgeon on 6th May. Ill ask then.
Can they do anything for it other than wearing a sleeve?
The other thing that still bothers me is what I am still calling 'the cording' that I had just after the mastectomy. Just after the mastectomy, I had it under the arm, and across the inside of the elblow (at this point you could feel the cord), and it gradually moved down to the hand and across the back of the fingers (but at this stage it was a soreness under the skin, really wierd). Then it fell off the end of the fingers, and appeared in my back.
Last week, it was in my hand again. Today it is across the top of my shoulder where by bra strap lies. It now feels like a soreness or bruise under the skin - again very strange.
Is this all the same symptoms of lymphodemia, and not really the cording nerve?
I would contact your bcn and ask to be refered to lymphoedema clinic. IF its lymphoedema, the quicker you get it looked at the better as without treatment it will gradually get worse.
I have swelling in my hand just as you described, with the pain & heavy feelings too, and I had my mastectomy in June '08 and had 11 nodes removed.
I saw the lymphodeoma nurse and she agreed have mild lymphodeoma, and has given me a sleeve to wear.
Do you have access to someone similar, who might be able to assess and help you.
Best of luck, Rebecca
I am not sure if my hand is swelling just as a delay to my mastectomy last May, or if I am developing lymphodemia.
My hand swells for the least little thing. Then my arm aches and it all starts to feel heavy. I initially put it down to the fact that after my mastectomy and recon, I didnt use the arm a lot and that the muscle was probably weaker - but that doesnt explain the hand swelling. Even if I wear a watch it swells!
However, 10 months post mastectomy and 5 months post recon, I am not so sure now. I only had 5 lymph nodes removed, I didnt think that it would affect me so much as it has.