Preventing loss of range of motion in neck

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Melisande
Melisande Member Posts: 27 Member

My worst side effect so far (28 radiation session down, 5 to go) is the radiation burn on my neck. It is a 2nd degree burn now. Pink, raw, moist. Some bleeding at times. I am using Silver Sulfadiazine on the burn. I don't know if it is working or not, but it feels good and the burn doesn't seem to be getting dramatically worse since I started using the cream 4 days ago, so it isn't hurting. I am taking Tylenol for the pain. Apparently, Oxycodone doesn't do much for me, except make me itchy and constipated. 

Another thing I do to prevent pain is simply move my neck as little as possible. However, today I started wondering if I wasn't setting myself up for loss of range of motion later by not moving the neck now, even if it really hurts to do so. I have already asked my radiation oncologist about this, but will not hear back until Monday at the earliest. 

Does anyone understand how to prevent the build-up of scar tissue add loss of mobility after radiation burn? Does it make sense to stretch while you are still in active treatment or only once the healing process has started? 

Thanks!

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  • ERomanO
    ERomanO Member Posts: 317 Member
    edited November 2019 #2
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    Stretch your neck everyday

    That's what I was told, and it's probably never too early to start. Do what you can now then make it a daily routine forever once you're all healed up.

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
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    Sorry about your pain

    I'm finished with treatment, but I can remember the pain. I think you should definitely try to stretch your neck a bit, to keep range of motion. You don't need to torture yourself, if it's painful, for a long time, but an occasional stretch would be a good idea.

    You say 5 radiation sessions to go, and judging by the date of your original post, I'm guessing you are DONE, now.

    The good news I have for you, is that it seems like the radiation burn on the skin heals up pretty quickly. I was told it's because unlike sunburn, it isn't UV damage.

    You will slowly start to feel much better - trust me!

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
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    Sad answer is you probably

    Sad answer is you probably already have accumulated enough scar tissue that you will be cycling between okay and tight pretty much every day from now on.  Stretch now, stretch often.   My wife got me one of those vibrating massagers and it did wonders.  Reduced extreme jaw tightness to comfortably loose.  Two days later it was rock tight again.  That cycle has gone on for a year.  The more I stretch, the longer the period of loose, but it always comes back. 

    I also found if I keep my neck warm in winter wearing scarfs things are better.  You definitely will want to use SPF +50 in the summer, even if you spend all day in a cave.  When the burned tissue can handle it, slather on your burn cream.  Eventually you will want some form of skin cream for the burn area you can live with on a daily basis, because keeping the skin moist even 3 years post treatment helps me.

  • ratface
    ratface Member Posts: 1,337 Member
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    Sad answer is you probably

    Sad answer is you probably already have accumulated enough scar tissue that you will be cycling between okay and tight pretty much every day from now on.  Stretch now, stretch often.   My wife got me one of those vibrating massagers and it did wonders.  Reduced extreme jaw tightness to comfortably loose.  Two days later it was rock tight again.  That cycle has gone on for a year.  The more I stretch, the longer the period of loose, but it always comes back. 

    I also found if I keep my neck warm in winter wearing scarfs things are better.  You definitely will want to use SPF +50 in the summer, even if you spend all day in a cave.  When the burned tissue can handle it, slather on your burn cream.  Eventually you will want some form of skin cream for the burn area you can live with on a daily basis, because keeping the skin moist even 3 years post treatment helps me.

    you will get your motion back, don't fret

    I think the risk of mobility is more of an issue after a neck disection and even then most of that is recoverable. The Burns should not limit you long term very much even though they are really awful right now, mine were cracked, scabbed and constantly raw. A good quality presription cream makes a world of difference. This is nothing to worry about right now, just care for them as best you could and make yourself as comfortable as possible without aggavating the wounds.

     

    Mediaderm, Xclaire, or radiaplex are really good creams made for radiation burns but probanly not covered by insurance but worth the money. I used Xclaire and it was heaven on earth, really helped cure the burns.

  • SuzJ
    SuzJ Member Posts: 427 Member
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    stretch

    make sure you massage the cream in, and move. Believe me, you don't want to lose the range of motion. I can barely turn left or right after surgery, and you dont want to let it get like this

  • Jpg
    Jpg Member Posts: 3
    edited December 2019 #7
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    Loss of motion

    Hi,I had surgery for Sarcoma in March and April of 2013 in my lower cheek/jaw right side this was 2 operations first with robot had to be aborted so I ended up with having a radical very invasive and destructive.I did the 35 radiation treatments well that's were you are going to get the bad side effects I have severe scar damage from radiation so now my mouth does  not open and my neck is very tight loss of motion on that whole side and yes pain and there has been no one with any answers about treatment.I did all the neck stretch exercises the jaw exercises went to all the specialist for massage  and stretching treatments no help whatsoeve.One doctor was honest with me and said there is nothing they can do This is your new life.It only gets worst as time goes on.Sorry but its better to know what your infor than to be lied to by the doctors they are good at avoiding the truth.I wish you the best.

  • MGC
    MGC Member Posts: 72 Member
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    Radiation fibrosis

    You have summed it up quite well. The doctors just can't do much and there is not much more to the story sadly. Surgery or no surgery the radiation is a killer although it did rid the stage 4 tumore 10 years ago. The best thing one can do is keep the head and neck moving with excersise and and massage from day 1. Its an absolute MUST. Its better than nothing but there is no cure.

    Mine was 10 years ago