Soreness and cramping in neck almost a year after surgery/radiation

mechanicalrivers
mechanicalrivers Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
In January of last year, at age 20, I was diagnosed with a mucoepidermoid carcinoma of the salivary gland. I had one surgery removing just the gland then a second scraping the area where the gland was and removing all the lymph nodes on the right side of my neck. I had radiation without incident - with the exception of losing my taste buds - but I experienced no pain at all. My flexibility was fine following all the surgeries and the radiation, but recently, about seven months after my radiation ended, I have began experiencing pain and tension in my neck. My neck seems hard on the right side, though I think I can feel some scar tissue just under my skin (I do have a five inch long scar on my neck). If I lean my head forward for a while or put a lot of tension on my muscles, they bow out on that side and tense up. Also, I will wake up with them being sore and aching. This only began within the past month or so. Since it has started I've been rubbing/massaging my neck a lot and stretching it throughout the day but it doesn't seem to cure it. It isn't constant but it is happening often enough to be a painful annoyance. Anyone experience anything similar, or does anyone know what this is? I was supposed to have a follow-up meeting with my doctor this week but he canceled and I don't know when I will be able to ask him these questions.

Thank you.

- Angela

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Angela
    Welcome to CSN.

    A lot will change after radiation treatment; my Jaw can’t open more then ½ inch. You could just be having reactions from stretching as the muscles are tight after treatment. Don’t give up keep rubbing massaging and trying to stretching all you can, you might also want to get your dco to prescribe therapy for you to help get the neck back into shape.

    Also don't wait to have a meeting with him call his office and let him know you are having problems

    All the best to you keep posting
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    Hondo said:

    Hi Angela
    Welcome to CSN.

    A lot will change after radiation treatment; my Jaw can’t open more then ½ inch. You could just be having reactions from stretching as the muscles are tight after treatment. Don’t give up keep rubbing massaging and trying to stretching all you can, you might also want to get your dco to prescribe therapy for you to help get the neck back into shape.

    Also don't wait to have a meeting with him call his office and let him know you are having problems

    All the best to you keep posting

    My best guess
    Hi Angela

    I've recently been having some of the same issues. First let me say that having this cancer at 20 really sucks. I got it at 51 and thought that was bad. You are to be admired for handling it so well.

    Please go see your Doctor upon his/her return. Also I'm sure someone is handling their patients, you might try an email.

    Back to your question. I think you are accumulating "lymph" in the area you feel hardness. The hardness is because lymph is made of protein. If the area moves on you or is different upon awakening in the morning it most probably is this condition known as "Lymphedema" . It shouild soften up as you massage it. It is very near the surface so a very light touch is all that is needed. You might try rolling a tennis ball lightly over the area. This fluid is trying to drain through your tissue and either the radiation or surgery has damaged those pathways. It takes considerable time for things to get better and will never be "normal"

    There are folks who specialize in this type of therapy and are known as Lymphedema therapist which you might ask your doctor for a recomendation. If not PM me and I'll try and hook you up with more contact information. They have a Natuional registry and can be found in most areas. My best to you.

    Rick
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    heat
    Whether it is lymphedema or not, (and it may very well be instead the hardening of scar tissue over time) the recommendation of a therapist is a great idea. Perhaps you are more focused than me, but I found that someone else doing the massage tended to stick to it for quite a bit longer and know a lot more about the important areas to knead.

    If you are adamant about home solutions, consider adding heat to your regimen. A relative provided me a 'scarf' of rice inside of a soft material, and I simply stuck this into the microwave for various times depending on how much heat I wanted (be careful with this, of course!), and then would wrap the scarf around my neck and let the heat soak in while I sat here at the computer or watched TV or rode the stationary bike.

    It is not dissimilar to what a therapist would offer, in my experience, as mine always provided heat with their massages. Even so, by the way, they always insisted on exercising the area, so I think you are right on in that regard.

    Just an idea.

    Take care,

    Joe

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