Neck Dissection with Nerve Pain

tommyodavey
tommyodavey Member Posts: 728 Member
in Head and Neck Cancer #1
A little update on my recent treatment. I started phase III yesterday getting RT. They first told me it was going to be 25 treatments but changed it to 30. The reason was that it is low dose RT and they are stretching it out to minimize my side effects. Coming home today from my 2nd treatment I could feel the burn on my neck. Feels like a sunburn. We'll have to wait and see what the future holds with my side effects. Most likely a sore throat and whatever else comes with it.

But what is giving me trouble is my right shoulder and arm from the nerve damage sustained from my neck dissection. The nerve wasn't severed but he did have to stretch it quite a bit to get to my lymph nodes.

What is the best therapy for that? My RT Oncologist said to wait two more weeks before starting PT. It's amazing how much strength I lost from the surgery. Some days are okay and others like today are painful.

I'm with everyone else. Cancer sucks!

Tommy

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    It does
    let's rename this board to the "Cancer Sucks" board. Hang in there Tommy. I'm with you on deconditioning. It is amazing with disuse alone how much you lose, how fast. I ran a half-marathon right before my treatment started in the fall. Now....

    Well, three days ago I started working out, just before finishing rads. Although many would think my today workout is a joke, you and I know better. I'll get there again. So will you.

    Best

    Pat
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #3
    I don't know about PT
    Strength came back slowly. During this time take everything slowly. Make sure that you get some cream from the cooking crew (radiation techs.) Yes, it feels like a sunburn, protect the skin and slather the lotion on after rads. I finished radiation mid October and went to see a chiropracter in December. Really helped with range of movement in my neck and they used a tens machine on the shoulder, ahh, need to call and make an appointment. Good luck with your treatment, one day at a time.
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #4
    KTeacher said:

    I don't know about PT
    Strength came back slowly. During this time take everything slowly. Make sure that you get some cream from the cooking crew (radiation techs.) Yes, it feels like a sunburn, protect the skin and slather the lotion on after rads. I finished radiation mid October and went to see a chiropracter in December. Really helped with range of movement in my neck and they used a tens machine on the shoulder, ahh, need to call and make an appointment. Good luck with your treatment, one day at a time.

    My Real Question
    What I am wondering is, does the nerve get better by using it or letting it rest? What my GP suggested was to get frequent massages and wrote me a script for PT. Now I'm told to rest it two more weeks. A little confused I guess. I'll wait and go back to the PT probably after my RT.

    And how could I have lost so much strength by having surgery? It's hard to lift my arm up to my head. It's very weak.

    Other than that I'm doing really good. What I thought was a radiation burn was actually the mask rubbing my surgical site. My tech said the burn won't happen for at least a week of therapy.

    Thanks for the nice replies,

    Tommy
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    tommyodavey said:

    My Real Question
    What I am wondering is, does the nerve get better by using it or letting it rest? What my GP suggested was to get frequent massages and wrote me a script for PT. Now I'm told to rest it two more weeks. A little confused I guess. I'll wait and go back to the PT probably after my RT.

    And how could I have lost so much strength by having surgery? It's hard to lift my arm up to my head. It's very weak.

    Other than that I'm doing really good. What I thought was a radiation burn was actually the mask rubbing my surgical site. My tech said the burn won't happen for at least a week of therapy.

    Thanks for the nice replies,

    Tommy

    my bad
    Oh, I didn't understand the q. If you can't use a muscle group, you lose about 3% of its strength for every day it doesn't get used. If that formula doesn't predict how weak this muscle has become (say you just woke up from surgery and it was immediately that weak), then your nerve "stretching" has temporarily paralyzed that nerve, and a portion of the muscle simply isn't working). PT won't fix the nerve, time will do that. PT will help muscle and joint.....

    Hope this helps.
  • DrMary
    DrMary Member Posts: 531 Member
    #6
    tommyodavey said:

    My Real Question
    What I am wondering is, does the nerve get better by using it or letting it rest? What my GP suggested was to get frequent massages and wrote me a script for PT. Now I'm told to rest it two more weeks. A little confused I guess. I'll wait and go back to the PT probably after my RT.

    And how could I have lost so much strength by having surgery? It's hard to lift my arm up to my head. It's very weak.

    Other than that I'm doing really good. What I thought was a radiation burn was actually the mask rubbing my surgical site. My tech said the burn won't happen for at least a week of therapy.

    Thanks for the nice replies,

    Tommy

    That's a tough one with nerves - the one that got stretched is very irritated right now, and so PT could indeed irritate it even more. Doug had a similar issue - the nerve that got stretched affected his right cheek and his lips. Considering how much talking he does in his job (in several languages) and the fact that his moonlighting work was in voiceovers, this was a concern. His dissection was after radiation was over, so we could separate out the issues - I tried ultrasound massage with him for a while to see if it sped healing. Not sure if it did, but the nerve calmed down eventually.

    Nerve irritation can also cause weakness - if it is impinged enough to not be able to send signals properly. You might want to work on keeping flexibility rather than strength right now - there are various stretches and such a PT could advise to avoid "frozen shoulder."

    About the burn - our doctor recommended Burt's Bees - we used the "balm" form. You have to warm it a bit in your hands, but it did seem to help.
  • Jahnsart
    Jahnsart Member Posts: 41
    #7
    tommyodavey said:

    My Real Question
    What I am wondering is, does the nerve get better by using it or letting it rest? What my GP suggested was to get frequent massages and wrote me a script for PT. Now I'm told to rest it two more weeks. A little confused I guess. I'll wait and go back to the PT probably after my RT.

    And how could I have lost so much strength by having surgery? It's hard to lift my arm up to my head. It's very weak.

    Other than that I'm doing really good. What I thought was a radiation burn was actually the mask rubbing my surgical site. My tech said the burn won't happen for at least a week of therapy.

    Thanks for the nice replies,

    Tommy

    shoulder muscles
    I had my surgery in late August, I can see the great improvement but it still isn't 1 hundred percent. I work, do yardwork workout with a trainer and I stiill don't have the complete strength back. I think that following my MD's advice did me some good not pushing it and letting it come back gradually saved me from potential injury. Like a friend of mine always tells me, "be kind to yourself".
  • sukichu61832
    sukichu61832 Member Posts: 12
    #8
    tommyodavey said:

    My Real Question
    What I am wondering is, does the nerve get better by using it or letting it rest? What my GP suggested was to get frequent massages and wrote me a script for PT. Now I'm told to rest it two more weeks. A little confused I guess. I'll wait and go back to the PT probably after my RT.

    And how could I have lost so much strength by having surgery? It's hard to lift my arm up to my head. It's very weak.

    Other than that I'm doing really good. What I thought was a radiation burn was actually the mask rubbing my surgical site. My tech said the burn won't happen for at least a week of therapy.

    Thanks for the nice replies,

    Tommy

    Nerve damage
    I have the same problem on the left side. They told me not to try to push any kind of movement because that only irritates the nerve more. It heals at about one inch a month - takes up to a year to heal. They told me that physical therapy will only delay recovery. I am 5 months out of surgery. I can now raise my arm - slowly to my head - but anything higher than that I have to have "help" from my other arm. I can tell that I have had some healing.....it has been slow. I was told that some people have trouble lifting EITHER arm. Yikes. That would have been bad.
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #9
    sukichu61832 said:

    Nerve damage
    I have the same problem on the left side. They told me not to try to push any kind of movement because that only irritates the nerve more. It heals at about one inch a month - takes up to a year to heal. They told me that physical therapy will only delay recovery. I am 5 months out of surgery. I can now raise my arm - slowly to my head - but anything higher than that I have to have "help" from my other arm. I can tell that I have had some healing.....it has been slow. I was told that some people have trouble lifting EITHER arm. Yikes. That would have been bad.

    Thanks for the Info
    I just figured that out myself today. By not doing the exercises they recommended my arm doesn't hurt much anymore. My Oncologist suggested to wait a few more weeks before going back to PT. And I may not go back at all and just let the nerves heal on their own.

    Thanks for confirming what I was thinking.


    Tommy O
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #10
    Tommy, it definitely took
    Tommy, it definitely took some time and working on getting my left arm to move past shoulder level. It is still weak, and my left had and fingers always have tingling to them. I am weaker for sure than I ever was. I used to be able to lift a lot of weight over my head, because I did it all day long 12 hours a day when I was working at the shoe store. Now I struggle with getting just dishes into the cupboard. Very frustrating. I can raise my left arm almost to my ear now. Just can't with any weight in it though.
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #11
    sweetblood22 said:

    Tommy, it definitely took
    Tommy, it definitely took some time and working on getting my left arm to move past shoulder level. It is still weak, and my left had and fingers always have tingling to them. I am weaker for sure than I ever was. I used to be able to lift a lot of weight over my head, because I did it all day long 12 hours a day when I was working at the shoe store. Now I struggle with getting just dishes into the cupboard. Very frustrating. I can raise my left arm almost to my ear now. Just can't with any weight in it though.

    Found the Answer
    Saw my Dr. today and mentioned the problem with my arm, or more precisely the pain in my shoulder blade area. He said to exercise every day. The goal is to get the arm up to your ears and then the pain should go away. So I either use my other arm to help or use the wall to help it reach.


    Tommy
  • Hal61
    Hal61 Member Posts: 655
    #12
    tommyodavey said:

    Found the Answer
    Saw my Dr. today and mentioned the problem with my arm, or more precisely the pain in my shoulder blade area. He said to exercise every day. The goal is to get the arm up to your ears and then the pain should go away. So I either use my other arm to help or use the wall to help it reach.


    Tommy

    Had the same question
    Tommy, I had a partial dissection, left side, 15 nodes removed. I overdid it at first, using slight weight on the dumb bells and doing side lifts. I just made me sore at that point, so I quit and eventually did much as you've described.

    Now I just stand straight, and lift the arm ever upward, without bending the elbow. Nearing two years from dissection, it's getting better. I can lift higher with less effort. The surgery also moved some bones around. My scapula now angles up into my trapezoid muscle on the inside. It took my ENT/surgeon about a year to admit the dissection sometimes does this. Others have had a similar result. It doesn't seem to be much of a problem.

    Keep doing what you describe, the area needs stretching and strengthening. In time it will get easier, and your range higher.

    best, Hal
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #13
    Hal61 said:

    Had the same question
    Tommy, I had a partial dissection, left side, 15 nodes removed. I overdid it at first, using slight weight on the dumb bells and doing side lifts. I just made me sore at that point, so I quit and eventually did much as you've described.

    Now I just stand straight, and lift the arm ever upward, without bending the elbow. Nearing two years from dissection, it's getting better. I can lift higher with less effort. The surgery also moved some bones around. My scapula now angles up into my trapezoid muscle on the inside. It took my ENT/surgeon about a year to admit the dissection sometimes does this. Others have had a similar result. It doesn't seem to be much of a problem.

    Keep doing what you describe, the area needs stretching and strengthening. In time it will get easier, and your range higher.

    best, Hal

    Exercise
    Thanks Hal for bringing this up again. I saw my surgeon yesterday and told him about my sharp pain in my right shoulder blade area. He told me to hold my arm down against my leg, palm facing the leg, then raise it up to my ear. Of course I couldn't do it so he said to either use the other arm to assist it or put the arm up against the wall and push towards it until it touches my ear. I am to do it 36 times per day. He had given me that exercise in the hospital but didn't tell me to keep doing it. PT was a waste of time and money.

    When I asked him how long I should be doing them, he said that I'll know when to stop. Meaning I'll be able to lift it w/o assistance. He said I'll feel my strength come back.

    Sure wish he would have told me that right off. But no mind, it will be fine in a few weeks.

    My right lip is still numb and there is a possibility that it may stay that way. The nerve was right on top of the cancer and he moved it around a lot. I have faith that my nice smile will return before the year is up.

    P.S. Today was day 11 out of 30 for my RT. Have mouth sores and difficulty swallowing. Got the Magic Mouthwash to help.

    Tommy

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