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Lymphodema????????

tasha_111's picture
tasha_111
Posts: 2052
Joined: Oct 2008

Hi, do I have this Lymphodema? My right arm (where all lymph nodes were removed last dec) is fine for a while, then pretty much useless and so painful to the touch. It doesn't swell, go red or have lumps, but it feels like I have held it under a steam-roller for a couple of passes. Upper arm dead, elbow in agony and lower arm to wrist Arggghhhhhhhhhhh! Any advice much appreciated. Thanks Julia (((((all)))))

zahalene's picture
zahalene
Posts: 680
Joined: Nov 2005

Julia, I had 2 radical mastectomies at different times with lymph nodes removed both times. I had lymphadema in both arms but it was not exactly the same. One arm had more swelling, one ached more, etc. It depends a lot on how much damage was done to the circulatory system at each site.
You should get your onco to evaluate your situation. There are things they can do to help you feel better and function more comfortably.
And by the way, my surgeries were in 1986 and 1988 and things gradually got better until I have very little discomfort now as long as I am reasonably careful about how I use my arms. Some of the numbness has proved to be permanent but it has become a non-issue as well.

tasha_111's picture
tasha_111
Posts: 2052
Joined: Oct 2008

Thanks for the reply. I'll try my onco, but he hasn't been much help with anything else so far. But at least if I know what it is I can go back to my surgeon, he is really helpful and caring. Thanks again Julia

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

The deadness you describe is likely nerve damage. After nearly 10 years the back of my arm is still numb and I pull away instinctively whenever anyone touches it. The pain you mention could be a form of neuropathy. I have seen in the boards some discussions on neuropathy. You may want to check them out. You should check with your surgeon. They may refer you to a neurologist or some other specialist.

Connie Jo
Posts: 5
Joined: Jun 2009

Hi Julia,

I also have lymphadema in my right arm from having my lung removed. My scar
ends under my arm much like your surgery. I only had 5 lymph nodes removed
but have a burning sensation and swelling from under my arm all the way to the
center of my chest. I have to be careful about my activities but have found
that if I do lymphadema massage it will get better. My oncologist and surgeon
were of no help regarding the lymphadema. I found answers through my physical
therapist.
Good luck,
Connie Jo

maya00i's picture
maya00i
Posts: 43
Joined: Jun 2009

I had Lymphedemia in my right arm. I had a radical modified mastectomy with 9 out of 10 lymph nodes positive. I was sent to a therepist that takes care of this problem.They teach you how to wrap your arm,they massage your arm and measure it each time you go.They teach you excerises to keep the swelling down.Once it was down I was measures for an arm sleeve to wear. They how come in many colors.
You would be surprised the things that will make it swell.

Hestia
Posts: 26
Joined: Jun 2009

I have lymphedema in my left arm due to a melanoma that was removed from the upper part of my arm in 1991. The lymphedema started about 2 years later and is still with me today. I used wrapping, massage, lymphapress machine and a compression sleeve. Had it under control until last Oct (09) when my right arm broke without reason. After many tests was discovered I had Non-Hodgkins Lymphoma in that site. Had radiation and chemo (finished 4/09). Could not use machine or sleeve since last Oct because broken arm could not be treated and just laid against my body until I started physical therapy after chemo. Therefore, had no function in right arm to work with left arm. I have little to no strength but am gaining mobility in right arm. That is, of course, why I can't put a sleeve.

I am now in the midst of doing what needs to be done with lymphedema. Massage is probably one of the best things, it moves the lymph fluid into the body at large. Most insurance companies now pay for lymphedema massage if it is done by a licensed lymphedema massage therapist. Easiest way to find one is to check local hospitals' physical therapy departments. Some places will not deal with insurance but do have licensed therapist. Thru hospital location most will deal with submitting insurance forms. I can't get massage now because insurance is paying for PT for right arm and the place I go doesn't have a lymphedema licensed therapist and my insurance company would blow out all its little brain cells if I presented two physical therapy sites for payments. Heaven above, let's not confuse the insurance companies!! Will have to wait till after PT on right arm.

If you Google lymphapress you will get info on use. That will let you know if you want to check with a doctor on use of machine and start the process to get one. Some medical personnel don't advocate machine, some do. I use machine when I can, it is a chambered sleeve (also comes for legs) with sequential pressure to removed lymph fluid from limb. Again most insurance companies cover, and medicare does cover machine and sleeves and massage.

Hope this isn't too much info, but a lot can be done for lymphedema.
good luck,
Hestia

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