Muscle Spasms in Neck: Can anyone relate?

Kimba1505
Kimba1505 Member Posts: 557
edited March 2011 in Head and Neck Cancer #1
Howdy everyone. It has been a while since I have posted a thread; but Mark is complaining more and more of "tightness" in his neck. Last night for the first time, he described it in a way that I could understand better. He said it was like having a constant muscle spasm in his neck, and he is combating that pain all day, but not EVERY day. We do not know if this is a result of surgery or radiation. I will remind you he had radical neck dissection, where they took all of the lymph nodes and the muscle in his neck, but spared the nerve. (left side) He had 6 weeks of radiation with 5 doses of chemo therapy. Can anyone relate or shed some light on this painful, fairly chronic experience.
He sees the surgeon in April; but I know where to get the real answers.
Thanks in advance,
Kim
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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Tightness and Sore Frequently
    Kim, I don't have an answer as for relieving the pain, mine is not severe.

    But, I do have frequent discomfort in that area (I only had the radiation, not a dissection). that side of my neck, throat, jaw area. It gets tight, feels thicker or more dense tissue. I try to exercise it with mouth and jaw stretching, throat and neck stretching, massage, stuff like that just to try and loosen the tissue and muscles up.

    For me that does seem to help, but it's kind of an ongoing battle. I'm fast approaching two years post treatment.

    Best to you and Mark,
    John
  • luv2cut1
    luv2cut1 Member Posts: 288
    Hi Kim
    Pat had radical neck dissection as well. He does not have constant pain, but he does have severe spasms in his neck, particularly if he moves the wrong way. He hasn't yet determined what the wrong way is, as apparently there are several ways he moves that cause the spasms. They usually last for only a short time, but they are extremely painful. He also feels tightness in his neck almost constantly. He has shoulder weakness as well, and very strange nerve sensations. For example, if you touch his neck, he will sometimes feel it in his shoulder (he had a pectoral flap, so his pectoral muscle is now covering his neck). His surgeon said that with everything that was done to his anatomy during his surgery, these spasms are to be expected, along with the tightness and strange nerve sensations. He said physical therapy may help, but so far Pat hasn't thought the pain severe enough to go for more therapy.

    I hope this helps. There are so many side effects, and I think everyone is a little different. I hope Mark's pain gets better.

    Myka
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    "That's just the way it is"
    Sparing history here except to note I also had rad neck dissection, I also, more than five years later, still get what I call neck cramps, Kim. They don't last that long, but they hurt like the dickens for their brief duration. I used to blame it on dehydration (and that IS something to consider) but I no longer really believe that.

    They happen, and then they go away. sometimes they last a few seconds, sometimes they last for what feels like at least a minute, maybe longer, but, in any event, they DO go away.

    One thing I've done is to use a rice warmer (I know,I know, I'd never heard of it either until dad's wife made me one) or some sort of heating device to wrap around the neck. I am not sure, to be candid, how much good this does since I usually put it on AFTER the cramping, but it does feel good nonetheless.

    It may, given my own case, be something to deal with for the long term. So far, again, in my case, it has not been dangerous, but, yeah, really painful for the duration.

    Talk to docs, by the way, and get back to us on this, but my conversations with them lead me to believe, not to fault them, that they are singing the same song: 'that's just the way it is, some things will never change' (Bruce Hornsby, local boy done good :)).

    I wish you and your husband the best.

    Take care,

    Joe
  • Kimba1505
    Kimba1505 Member Posts: 557

    "That's just the way it is"
    Sparing history here except to note I also had rad neck dissection, I also, more than five years later, still get what I call neck cramps, Kim. They don't last that long, but they hurt like the dickens for their brief duration. I used to blame it on dehydration (and that IS something to consider) but I no longer really believe that.

    They happen, and then they go away. sometimes they last a few seconds, sometimes they last for what feels like at least a minute, maybe longer, but, in any event, they DO go away.

    One thing I've done is to use a rice warmer (I know,I know, I'd never heard of it either until dad's wife made me one) or some sort of heating device to wrap around the neck. I am not sure, to be candid, how much good this does since I usually put it on AFTER the cramping, but it does feel good nonetheless.

    It may, given my own case, be something to deal with for the long term. So far, again, in my case, it has not been dangerous, but, yeah, really painful for the duration.

    Talk to docs, by the way, and get back to us on this, but my conversations with them lead me to believe, not to fault them, that they are singing the same song: 'that's just the way it is, some things will never change' (Bruce Hornsby, local boy done good :)).

    I wish you and your husband the best.

    Take care,

    Joe

    Good to hear Mark is not alone...
    ...but sorry to hear that you all know what he is talking about. It would seem that the spasm is not happening where the muscle is gone. So it makes perfect sense that the remaining muscles are doing work they were not meant to do, and are therefore "angry" and spasming.
    Marine, to answer your questions about stretching and massage; yes, Mark does these. And to be truthful, the days that he slacks off may very well be the days the spasms get worse. His desire for normalacy has been a blessing and a curse. On the up side it made him strive in recovery and regain so much fairly quickly. On the down side "normal people" (and by that I mean people with all of thier neck muscles) do not need to do daily massage and stretching...so in his practice of being "normal", perhaps he does not do the things he needs to do to keep this pain at bay.
    Joe, I am glad to hear about your use of heat. I have asked Mark if he thinks heat will help. I will talk with him again.
    Thank you all for your input,
    Kim :)
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Kimba1505 said:

    Good to hear Mark is not alone...
    ...but sorry to hear that you all know what he is talking about. It would seem that the spasm is not happening where the muscle is gone. So it makes perfect sense that the remaining muscles are doing work they were not meant to do, and are therefore "angry" and spasming.
    Marine, to answer your questions about stretching and massage; yes, Mark does these. And to be truthful, the days that he slacks off may very well be the days the spasms get worse. His desire for normalacy has been a blessing and a curse. On the up side it made him strive in recovery and regain so much fairly quickly. On the down side "normal people" (and by that I mean people with all of thier neck muscles) do not need to do daily massage and stretching...so in his practice of being "normal", perhaps he does not do the things he needs to do to keep this pain at bay.
    Joe, I am glad to hear about your use of heat. I have asked Mark if he thinks heat will help. I will talk with him again.
    Thank you all for your input,
    Kim :)

    Yep, my neck is more often
    Yep, my neck is more often than not a daily issue. I only had a modified radical neck dissection and 23 lymph nodes removed. Didn't have a major reconstruction there or anything like some people have. The tightness is constant for me and I would say that I have daily pain of about a 2. I just hate it when I have the flashes of stabbing pain. It's like a sharp stabbing and burning at the same time and it really hurts. It happens quite a few days a week. Sometimes I get extra crampy in my neck too. I do stretch and massage everyday. Sometimes though, my neck is really bad and just touching it or any fabric or anything on it is super annoying and kinda painful. Sometimes it's not to bad, and I do have a neck wrap that I put in the microwave, but not too hot. My neck seems extra sensitive to heat or cold now.

    If I do a lot of cleaning or house work, the pain and spasms seem to get worse. Stretching and light exercise are ok most of the time.

    This neck thing, my tongue, and major dryness are the major things that are annoying. Well, and the swallowing thing.
  • Pumakitty
    Pumakitty Member Posts: 652
    Hi Kim
    My dad just started to have a pain in the side of his neck. He said it was really sore and felt like a nerve or muscle. It only lasted a day or two and then went away.

    Hope Mark feels better and the pain issue lets up.

    Kathy
  • timreichhart
    timreichhart Member Posts: 194

    Yep, my neck is more often
    Yep, my neck is more often than not a daily issue. I only had a modified radical neck dissection and 23 lymph nodes removed. Didn't have a major reconstruction there or anything like some people have. The tightness is constant for me and I would say that I have daily pain of about a 2. I just hate it when I have the flashes of stabbing pain. It's like a sharp stabbing and burning at the same time and it really hurts. It happens quite a few days a week. Sometimes I get extra crampy in my neck too. I do stretch and massage everyday. Sometimes though, my neck is really bad and just touching it or any fabric or anything on it is super annoying and kinda painful. Sometimes it's not to bad, and I do have a neck wrap that I put in the microwave, but not too hot. My neck seems extra sensitive to heat or cold now.

    If I do a lot of cleaning or house work, the pain and spasms seem to get worse. Stretching and light exercise are ok most of the time.

    This neck thing, my tongue, and major dryness are the major things that are annoying. Well, and the swallowing thing.

    my neck hurts everyday
    well I had neck dissection of one lymph node on my right side of my neck along with 7 weeks of radiation and 4 months of chemo and soon as I got done with my radiation treatments in august like 5 weeks later I started to have major neck and shoulder problems and I have to rub my shoulder and neck everyday to relief the pain for a bit before it comes back. Yes as of today I am still having problems with my shoulder and neck and I dont see any of the pain going away any time soon.
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    Guilty
    Kim,

    I am in the same boat as Mark, I am guilty of not always doing what I mention on here. Yes, the normal person syndrome : ). I slack off sometimes and then it comes back to bite me in the neck, thought I was going to say something else didn't ya : )

    I then have to start over and do extra work to get back where I was.

    Sweet- Yep, some of the things we go thru each day. Some days I am soooo dry and drink so much fluid that when I watch TV in the evening, I am running to the bathroom every commercial, geez.... oh well, I am told that walking is good for me : )

    My Best to Everyone Here
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    MarineE5 said:

    Guilty
    Kim,

    I am in the same boat as Mark, I am guilty of not always doing what I mention on here. Yes, the normal person syndrome : ). I slack off sometimes and then it comes back to bite me in the neck, thought I was going to say something else didn't ya : )

    I then have to start over and do extra work to get back where I was.

    Sweet- Yep, some of the things we go thru each day. Some days I am soooo dry and drink so much fluid that when I watch TV in the evening, I am running to the bathroom every commercial, geez.... oh well, I am told that walking is good for me : )

    My Best to Everyone Here

    Neck pain
    Kim
    Only C&R for me, and I still experience neck spasms on a daily basis- triggered by activity. L'hermitte's Sign is different, and experience that less, now, as I can ID what triggers it. I figure it's just another, albeit acceptable, side-effect. Hope it gets better for Mark.

    kcass
  • tonyanddenise
    tonyanddenise Member Posts: 70
    ditto
    neck is constantly tight. Have limited range of motion, particularly to the right. Doing so pulls my face so to speak. the hurt does not go away, been on several meds to try to make it go away. spasms are frequent. I see no particular trigger for them. My shoulder has constant irritation due to the muscle atrophy from the severed spinal accessory nerve. nerve pain too.
    I love the heated bag idea!
    Kim I hope you and Mark are doing better these days.
  • miccmill
    miccmill Member Posts: 248

    ditto
    neck is constantly tight. Have limited range of motion, particularly to the right. Doing so pulls my face so to speak. the hurt does not go away, been on several meds to try to make it go away. spasms are frequent. I see no particular trigger for them. My shoulder has constant irritation due to the muscle atrophy from the severed spinal accessory nerve. nerve pain too.
    I love the heated bag idea!
    Kim I hope you and Mark are doing better these days.

    Neck pain
    Glenn had the modified radical with 25 lymph nodes but no muscle removal.

    He had neck pain and shoulder pain even after faithfully doing his PT exercises. He gave up on them and started doing bicep curls with 10lb weights, mostly because he was shocked at the lose of muscle tone the 80lb. weight loss gave him. No more neck pain.

    Doesn't make any kind of anatomical sense but now he's keeping up with the bicep curls.

    Lisa
  • Kimba1505
    Kimba1505 Member Posts: 557
    miccmill said:

    Neck pain
    Glenn had the modified radical with 25 lymph nodes but no muscle removal.

    He had neck pain and shoulder pain even after faithfully doing his PT exercises. He gave up on them and started doing bicep curls with 10lb weights, mostly because he was shocked at the lose of muscle tone the 80lb. weight loss gave him. No more neck pain.

    Doesn't make any kind of anatomical sense but now he's keeping up with the bicep curls.

    Lisa

    Overall doing VERY well.
    Chronic pain is a problem many people suffer with, and apparently Mark, and H&N survivors join the ranks; but I must say overall Mark is doing really well. I can tell when he comes home if he has been battling pain all day...even though he tries to hide the fatigue from trying to cope all day.
    A daily banana, hydrate, bicep curls. they are all worth a try. He takes Motrin sometimes. but I know he will not want to take any prescribed medication.
    Tony, you look awesome in your picture!! Mark wants my picture updated too. It was taken less than a month after finishing treatment.
    Kim
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Kim

    Looks like we all have some type of pain or discomfort either due from the surgery or radiation, my pain is not too bad. But then again I have so much other pain it is hard to tell what hurts the most. I am on a pain med that does not have many side affects I think it is called Ultram (Tramadol) it works like magic for me, ask your doctor about it and if it would help Mark.

    All the best to you
    Hondo
  • Clearblue
    Clearblue Member Posts: 186
    Hondo said:

    Hi Kim

    Looks like we all have some type of pain or discomfort either due from the surgery or radiation, my pain is not too bad. But then again I have so much other pain it is hard to tell what hurts the most. I am on a pain med that does not have many side affects I think it is called Ultram (Tramadol) it works like magic for me, ask your doctor about it and if it would help Mark.

    All the best to you
    Hondo

    pain in the neck
    Hi Kim
    Havent spoken u directly, but have followed most of your posts.
    My wife is in day 23 of her RAds.
    She says she feels "bent over" and that her neck is really stiff.
    Although shes had enough neck surgeries to keepher busy, she just this evening said that her neck feels really stiff adn painful.She's very much in tune with her body; this is the first time since Rads Started that she has spoken of stiff and painful neck. THouigh it is not a stabbing pain, it is there.
    I would assume that because she is less active this is moreso.
    Judging from what has been posted here, it sounds like Mark is not alone.
    You two have both done very well under very trying circumstances.
    Take care
    Clear.
  • Greg53
    Greg53 Member Posts: 849
    Clearblue said:

    pain in the neck
    Hi Kim
    Havent spoken u directly, but have followed most of your posts.
    My wife is in day 23 of her RAds.
    She says she feels "bent over" and that her neck is really stiff.
    Although shes had enough neck surgeries to keepher busy, she just this evening said that her neck feels really stiff adn painful.She's very much in tune with her body; this is the first time since Rads Started that she has spoken of stiff and painful neck. THouigh it is not a stabbing pain, it is there.
    I would assume that because she is less active this is moreso.
    Judging from what has been posted here, it sounds like Mark is not alone.
    You two have both done very well under very trying circumstances.
    Take care
    Clear.

    Hi Kim!
    Kim,

    So very glad to see that Mark is doing well! This is one of the very few side effects that I have that really hurts. It is exactly how others and you have described it. When I turn a certain way, usually when I look down, it's like a "charley-horse" in my neck. And yep, when I do the the exercises, I get them less.

    As always positive thoughts to you and Mark!

    Greg
  • rmdgy
    rmdgy Member Posts: 22
    Pain in the neck...
    Yes, I have two types of neck/jaw pain to deal with on an occasional basis. One is a cramp in the right side of my neck, which is very similar to a charley horse or leg cramp. This one usually hits at night. I have tried stretching exercises to help with this issue. The second type of pain experienced since finishing radiation in June 2009 is a sudden, sharp pain in the jaw. This one usually occurs when I begin to eat or drink something. I mentioned this issue to my ENT and he called it "First bite syndrome". He said it was a common side effect for H&N patients who have undergone radiation therapy. There is not much I can do as i never know when it will strike and the pain subsides rather quickly.

    Best regards,

    Glenn
  • buzz99
    buzz99 Member Posts: 404
    Neck pain
    Ditto what everyone says about this subject. My husband, Buzz, had a radcal neck done in 2001 with the muscle and lympth nodes removed. He still has tightness and occasional cramping on that side. So this must be "normal" after neck dissection.
  • abbimom
    abbimom Member Posts: 87 Member
    same here
    I'm 11 years post treatment and actually my neck is very stiff now. It comes and goes but lately it has been staying. I get a deep tissue massage once a week and that has helped a lot. Sorry to hear you are having the same problems. On bad days I bought one of those neck pillows and keep it with me. good luck
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    yes
    Yes it gets better over time, however after 15 years I still have some and the go in spirits. I can have them for 6 weeks and then pretty much go away for months. Then they come back but there is no connection to anything as to time of year etc.

    I found the best way to stretch is behind the steering wheel of my car. I go out and use the high back seat to put my back against and both hands at about 10 and 2 with pressure back against the seat. I would turn my head to the left with holding my left shoulder in place and using my right arm putting the palm of my chin on my jaw and pushing gently more to the left and hold for approx. 5 sec. The I would do the same with turning to right and using left arm and had. As time went on I would go longer with time and push harder.

    Also I would use palm and push up on jaw tilting head up and holding. Then both hands behind the head and pull down.

    Lastly i would roll my head to the left in a circle and then to right in circle.

    Found out the more I did this and holding it longer the better the tightness loosened up and then less cramps there are. However sadly enough they never have gone away completely.

    I now have habit durning a stop light to doing the workout some. :-)

    John
  • KristynRuth86
    KristynRuth86 Member Posts: 140
    fisrpotpe said:

    yes
    Yes it gets better over time, however after 15 years I still have some and the go in spirits. I can have them for 6 weeks and then pretty much go away for months. Then they come back but there is no connection to anything as to time of year etc.

    I found the best way to stretch is behind the steering wheel of my car. I go out and use the high back seat to put my back against and both hands at about 10 and 2 with pressure back against the seat. I would turn my head to the left with holding my left shoulder in place and using my right arm putting the palm of my chin on my jaw and pushing gently more to the left and hold for approx. 5 sec. The I would do the same with turning to right and using left arm and had. As time went on I would go longer with time and push harder.

    Also I would use palm and push up on jaw tilting head up and holding. Then both hands behind the head and pull down.

    Lastly i would roll my head to the left in a circle and then to right in circle.

    Found out the more I did this and holding it longer the better the tightness loosened up and then less cramps there are. However sadly enough they never have gone away completely.

    I now have habit durning a stop light to doing the workout some. :-)

    John

    I can relate
    I know what he means, I have the same pains in my neck and when I tilt my head all the way forward (like looking down) I get a numbness all the way down my spine. I've asked the oncologist and though there is no remedy he says he does expect it to get better. He says it is due to the radiation on the spine, and that it is neurological (sp?). I hope he gets to feeling better!