• Who has had lymphedema, and how bad has it gotten.

    Asked by GregP_WN on Friday, August 26, 2016

    Who has had lymphedema, and how bad has it gotten.

    What have you done to help with it?
    Here is an article about it too >> http://www.exeromed.com/how-to-manage-and-detect-early-lymphedema-symptoms/?utm_content=bufferc5bc7&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer

    9 Answers from the Community

    9 answers
    • beachbum5817's Avatar
      beachbum5817

      I had lymphedema in my left arm. I was lucky in that it was found early. I was seeing a physical therapist to help with the movement of my arm after my double mastectomy. She noticed it and started treating it immediately. It took about 5 months of going 3 times a week to get it back to normal. She would wrap it after every treatment. That really helped. When my treatment was complete, she measured me for a sleeve to wear when needed. I am glad to say that I have only had to use it a few times. I do try to constantly protect the arm.

      almost 3 years ago
    • Sheryl88's Avatar
      Sheryl88

      I have mild symptoms in my right arm. Mild was still quite painful. Occupational therapist gave me some exercises, it feels much better. Strange thing is, I only had 1 node removed from the right side. 5 from the left, and no symptoms. After chemo is complete, will have to have a n axillary lymph node dissection on left side. Looking for any advice.

      almost 3 years ago
    • MST59's Avatar
      MST59

      When I was diagnosed in 01 with BC and had a mastectomy, I had very few problems with lymphadema. Since I had a reoccurance in 15, it has been a problem. My right arm is much bigger than my left. I have gone to OT 3xweeks for massage and wraps and she did get my arm down. It doesn't stay down. I do have a compression sleeve for day and another one for nights. I am self conscious about my arm. I do avoid sleeveless shirts outside of the home .I do need to wear a bigger size to fit my arm. It doesn't hurt and I try my best to deal with it. I am working on massaging it again, trying to get it down. The summer heat has impacted me. I don't wear the sleeve all the time during the day//its hot.

      almost 3 years ago
    • kimba9584's Avatar
      kimba9584

      i had 2 lymph nodes removed from my right arm when had mastectomy so i was told that i now have lymphadema my arm seems the same right now but was told it could happen anytime , so i will get bracelet for arm and will watch hopefully nothing happens , it is my dominant arm

      almost 3 years ago
    • bunny2's Avatar
      bunny2

      My lymphedema has gotten very bad, It started about four weeks after bilateral mastectomy on my right side where I had 31 lymph nodes removed. It has affected my right arm and chest. I have had treatment with lymphedema specialist, arm compression sleeve, micro current, acupuncture, taping, lasers everything helps while i am doing it but by the next day it is worse. It is extremely painful. i have kept very active, lost 30 pounds and still it gets worse. I saw Dr Chang at the University of Chicago and he has recommended lymph node transfer with reconstruction surgery. Of course insurance denied it as experimental. The reason I have to have reconstruction surgery is so Medicare will pay for part of the costs. This is my last hope as I am in pain all the time. Dr Chang said I should have immediate relief because all the adhesions on my chest are blocking any lymph fluid from draining. i am upset because I never cared about having reconstructive surgery at my age. But now Have to have such and invasive procedure just to get medicare to help pay the costs. There is so much wrong with our society and insurance industry. I already paid over 50 thousands dollars for my cancer treatment before I became eligible for medicare. I worked thru all my treatments and returned to work 10 days after my mastectomy, but lymphedema has got the better of me and I have finally retired. WIsh me luck with my surgery. I will have to stay in the Chicago area for a week after surgery in case anything goes wrong. So even more expenses. I am trying very hard to develop a positive attitude going into all this. I am booked for Sept 30, first insurance denied it and I was told no surgery while I fought with insurance but now I am back on the schedule again. i believe
      lymphedema is more common than anyone realizes and has a much bigger impact on life than anyone is aware of. They are developing new ways to treat lymphedema but with insurance refusing to pay for these new treatment options and medicare continues to deny ii is even a treatable condition there is not a lot of hope for the many people who suffer. I know of women who are wearing old worn out compression sleeves because of the high cost of new ones.

      almost 3 years ago
    • beachbum5817's Avatar
      beachbum5817

      Bunny2, I am so sorry that you have to go through all of this. It's ridiculous that insurance won't cover this for you. It makes me so angry. Did you happen to see the link that someone put on here a week or two ago about getting financial help with treatment? Maybe it has some information that you can use. I will remember you in my prayers that all will go well. Good luck. Take care.

      almost 3 years ago
    • kimba9584's Avatar
      kimba9584

      my prayers are with you bunny2

      almost 3 years ago
    • CASSIEME1's Avatar
      CASSIEME1

      mild I haven't worn my sleeve in a while

      almost 3 years ago
    • Nanzee's Avatar
      Nanzee

      I'm waiting to be diagnosed. My left arm is definitely swollen and sore after removal of six lymph nodes during my mastectomy--three of them had HER2 and ER positive cancer after six rounds of chemo. I have yet to have radiation to the axilla, so I'm expecting to have a problem, as radiation makes lymphedema worse. I'm glad it's being addressed early. After all I've been through and all that's yet to come, I don't want another serious problem!

      almost 3 years ago

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