• Is there anyone that has experienced muscle deterioration post radiation? How are you coping? What are your symptoms?

    Asked by carolk2222 on Sunday, October 30, 2011

    Is there anyone that has experienced muscle deterioration post radiation? How are you coping? What are your symptoms?

    Treated @ age 25 for hodgkins with radiation. I m 53 & experience muscle deterioration in neck, shoulders and back & pain where the radiation hit . Medical personnel couldn't figure out what was wrong with me. A couple years ago I thought that my problems might be due to radiation, no one really knew.
    In May I happened to think about googeling "muscle deterioration post radiation". Several articles popped up. I couldn't believe it! They described everything I was experiencing. They talked about "dropped head syndrome". Trouble holding head up due to muscle weakness in the neck. I sent info to my family doc, chiropractor, physical therapist and the oncologist that had treated me all those years ago. The oncologist called and wanted to see me (he had never heard of anything like this) and the others agreed that the article description fit me to a T.
    Saw neurologist who did EMG & it shows abnormal.
    No cure, can't get muscle back.
    Small % pts affected 3-30yrs after
    contact me please

    14 Answers from the Community

    14 answers
    • KarenG_WN's Avatar
      KarenG_WN

      Hi Carolk2222,

      I see that you are seeking to gain perspectives from others who have experienced muscle loss after radiation. As you may know, WhatNext is a new network and we are adding more people every day. I am sure someone will soon weigh in. In the meantime, I am going to use our social media channels (Twitter and Facebook) to see if I can find someone to share their experience with post radiation muscle loss.

      Thanks,
      Karen

      about 5 years ago
    • Gururobb's Avatar
      Gururobb

      @karen....Out of Curiosity
      What "social media" channels would that be??

      about 5 years ago
    • KarenG_WN's Avatar
      KarenG_WN

      Hi Gururobb!

      That would be Twitter: @WhatNext_Cancer and Facebook: https://www.facebook.com/whatnextcancer. Please join us!

      Thanks,
      Karen

      about 5 years ago
    • TubThumping's Avatar
      TubThumping

      Hi Carol,
      I finished chemo about 1 year ago and I haven't experienced muscle deterioration, however I do have nerve damage. All was well until June/July and then my fingers started to tingle. Within about a month to month and a half I went from being able to write, knit, crochet and cook without making a huge mess to having my hand pretty much useless.
      The EMG showed nerve involvement and an MRI showed it was not a tumor, scar tissue or swelling. The radiology oncologist says that the amount of radiation I received shouldn't have caused the damage but there are no other indicators. I've been to a neurologist and chiropractor.
      They are sending me to consult for hyperbaric oxygen treatment to see if there is a chance of the nerve repairing itself.
      I know what you are going through. It's frustrating and at this point I would see a witch doctor if I thought it might help!

      about 5 years ago
    • mspinkladybug's Avatar
      mspinkladybug

      i am doing water aerobics and now weight bearing exersizes to get some muscle back i have become so weak my purse is heavy... i can not pull myself up mine is in my arms alot so we r working on getting things back to normal

      about 5 years ago
    • carolk2222's Avatar
      carolk2222

      Thanks for replying with some answers and suggestions all.

      about 5 years ago
    • TubThumping's Avatar
      TubThumping

      Oops, I mean I finished radiation about a year ago, not chemo. I finished chemo about 7 months ago.

      about 5 years ago
    • pattycake's Avatar
      pattycake

      I did experience weak legs, could barely climb steps. I think it was more from not being active because it did get better after 2 months. I also go to Curves and the machines helped to strengthen my muscles....I am 73 so probably recovered slower than if I were younger.

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      Hi Carole,

      Who told you that you can't get muscle back? I would strongly suggest talking to a Physical Therapist. If there is nerve damage, that might be a different issue, but otherwise there should be no reason, even after all this time, that you can't regain a good part of your muscle strength, although it will take time and patience.

      almost 5 years ago
    • Eva's Avatar
      Eva

      My Husband was treated at 19 yrs old for Hodgins Disease with large doses of radiation. He also lost all muscle tissue in neck and shoulders. His shoulders looked like and skeleton. It was 30 yrs later more or less but at age 54 he died of squamous cell skin caner. They could not treat it because of he former high doses of radiation.

      about 4 years ago
    • Kathlene's Avatar
      Kathlene

      I am experiencing exactly the same deteriorating muscle in the neck, shoulder and back pain. I also had Hodgkin twice; had radiation, chemo, bone marrow stem cell transplant 20 and 21 years ago at the age of 21.
      I have been seen the the Neurology specialist and she told me that its something that I'll have to live with. I have an MRI Extremities Upper W/C scheduled in a few weeks.
      I was prescribed Fluoxitine and Morphine for my pain.

      I am also a Brain Injury surviver since 1997 at the age of 27.

      about 4 years ago
    • nancyjac's Avatar
      nancyjac

      I've had muscle deterioration but not from radiation. Mine is due to the fatigue from chemo and radiation that caused me to stop being as active as I had been which resulted in muscle atrophy. I also developed peripheral neuopathy from chemo which affects my balance and limits some of the activities I use to do. I also developed osteoarthritis in one knee which continues to limit my mobility somewhat causing additional muscle loss.

      about 4 years ago
    • bbbecca's Avatar
      bbbecca (Best Answer!)

      Wow. Hodgkin's seems to be the key here. My father was treated for Hodgkin's lymphoma in his thirties. When he was almost 50, my mom noticed a dip in his shoulder. They went to the doctor to have it checked out and they told him to exercise. Ten years later, he looked like a skeleton. Almost all the muscles in his body were completely gone, particularly in the neck, shoulders, and back. He couldn't hold up his head; had to wear a neck brace or hold it up with his hands. It was absolutely devastating, but there was no way to reverse the effects. His entire system just started shutting down. It was one thing after another, lots of trips to the ER and extended stays in the hospital for things like pneumonia, heart attacks, etc. He had surgery to fuse his neck in an attempt to help him keep his head up. All that did was damage his esophagus, so he couldn't keep anything down, making him lose more mass. The last five years of his life were excruciating, but he never stopped smiling and never complained. He passed away when he was 59. I was only 18 and I miss him terribly. I seek answers to better understand what happened to him... Why did he have to suffer so? What was this horrible thing that attacked his poor body? :(

      I'm so very sorry that you are now going through this, and to all the others who are going through it as well. Unfortunately, there is no known way to stop the muscle deterioration... not that we could find in time at least. I wish you all the best and hope your doctors have greater success with your care.

      And nancyjac, you are clearly unfamiliar with this type of muscle deterioration. It isn't like anything you've ever seen or experienced before. You can't make the deterioration stop and therefore cannot make the muscles come back with any amount of exercise. This isn't your average muscle loss due to lack of exercise. This is something else entirely, like a disease in and of itself. The muscles are literally eaten away, bit by bit, until there is nothing left but skin and bone. It's absolutely horrifying and heartbreaking to witness... I don't know how my dad kept smiling through it all.

      over 2 years ago
    • Erik1059's Avatar
      Erik1059

      I have got the same issues, the cause is mantle radiation, which I had about 26 years ago. There is a specialist in New York that specializes in this problem. His name is Dr. Michael Stubblefield. I saw him a few months ago, and have already made some good progress.

      about 2 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more hodgkin disease questions.  Also, don't forget to check out our Hodgkin Disease page.