neck muscles still very tight

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luv_freedom
luv_freedom Member Posts: 49
edited January 2016 in Head and Neck Cancer #1

I'm starting to wonder if the muscles on the side of my neck will ever become soft and relax again? I did some PT and am currently having massages done once a week to try and relax the muscles so that they will stop doing spasms all day and night. I'm so sore from the muscles being tight it's driving me crazy. Has anyone else had this after a neck dissection and had their muscles finally relax? Its been 6 months now since the surgery. So far nothing has helped. The massages help a lot right after I have it done but by the next day its back to what it was again.

Gary

Comments

  • Mike_Thompson
    Mike_Thompson Member Posts: 4 Member
    #2
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    Hi Gary;
    I was just wondering

    Hi Gary;

    I was just wondering the same thing. I am 13 months post surgery and I am finding that the muscles on the side where I had some lymph nodes taken out to be very stiff / tight. I originally thought that it was a result of the colder weather (I live in Canada) coming on but my surgeon also has mentioned that it is the result of scar tissue and the healing process.

    I stretch my neck and massage it in the evening and, like you it helps but it is not turning out to be a long lasting solution.

    I am seeing my surgeon again on the 28th and am going to inquire further as to what, if anything, can be done.  I have not looked at doing PT but since this is getting more and more irritating I suspect I will need to investigate that route soon.  I know PT's can look into managing / loosening up scar tissue via ultrasound and perhaps accupucture so, I believe there is a solution.

    If you hear of something before the 28th that is working better for you please let me know. Else, I will let you know what I find out.

    Cheers;

    Mike;

     

  • Barbaraek
    Barbaraek Member Posts: 626
    #3
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    Add us to the list

    of those with neck stiffness and muscle spasms, though the root cause of ours is radiation. We had one consult with PT and are doing neck stretches. I am going to encourage my husband to look into massage and ultrasound as well. Hope you all can feel some relief!

    Barbara

  • luv_freedom
    luv_freedom Member Posts: 49
    #4
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    Mike_Thompson said:

    Hi Gary;
    I was just wondering

    Hi Gary;

    I was just wondering the same thing. I am 13 months post surgery and I am finding that the muscles on the side where I had some lymph nodes taken out to be very stiff / tight. I originally thought that it was a result of the colder weather (I live in Canada) coming on but my surgeon also has mentioned that it is the result of scar tissue and the healing process.

    I stretch my neck and massage it in the evening and, like you it helps but it is not turning out to be a long lasting solution.

    I am seeing my surgeon again on the 28th and am going to inquire further as to what, if anything, can be done.  I have not looked at doing PT but since this is getting more and more irritating I suspect I will need to investigate that route soon.  I know PT's can look into managing / loosening up scar tissue via ultrasound and perhaps accupucture so, I believe there is a solution.

    If you hear of something before the 28th that is working better for you please let me know. Else, I will let you know what I find out.

    Cheers;

    Mike;

     

    Thanks for the reply Mike. I don't see my surgeon again till mid March so if your doc can give any suggestions let me know. I have a feeling that we're stuck with this. I know that I sound like a whinner but the doc didn't give me an honest summary in my opinion as to what to expect after surgery. My muscles on the side of my neck are always twitching so much it even makes my head move lol.

     

    Gary

  • MrsBD
    MrsBD Member Posts: 615 Member
    #5
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    Neck Muscles

    Radiation can cause stiffness too. It's been 15 months since my treatment ended and I am beginning to notice more stiffness with certain activities like shoveling snow or mopping the floor. Keep doing any exercises you've been given, try a warm microwaveable neck wrap, and keep moving. According to one of the therapists I talked to, it's important to hold a stretch for 30 seconds, not just fly through the exercises to get them done. Stretch slowly and gently like a ballerina, not a ninja. It's helped me, but it has to be consistent or the stiffness gets worse. I hope you both get some relief.

  • wmc
    wmc Member Posts: 1,804
    #6
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    Sorry Gary

    Yes radiation can cause it, but I never had radiation, Just a neck disseaton on both sides. Oh I also had a laryngectomy so I was cut from ear to ear. Most of the work was done from the left side and of corse the center for the hole to breathe through.  My right side is good only a little tight but my left is vere very tight and still [2 years] numb. I have no feeling fron the center of my chin to my left ear. I have been told, sorry but it most likely always be numb. So much was cut on the left side they took 48 lymph nodes and 38 on the right, all were clear and it was only done as a precaution. I must say I am glad they did, as so many have had it come back to a lymph gland, and I have none to come back to. They did a leval II ~ V dissection, and major work in VI for the removal of the larynx. I take muscle relaxers so I can have more movement for driving, I wont get back to 90% but it is over 45% so atleast my eyes get past 90%. Tho massage will feel good, it won't help my condition, but iw does so many I do recomend it. I streach my neck all day long to just keep the side movement. Well I also have an adhesive base plate on the center over the hole to hold a filter for breathing so it always feels like someone is pulling the skin like they would be stretching it to cover a drum. Most of mine is do to the larynjectomy so I live with what I can't change, and I do muscle relaxers and pain pills every day.  I do use a hand massager and it does help some when it gets real tight. It has a round ball shape and a conical one that helps the most. Had heat, but over the years it has been put in a safe place, that I don't even know about. That sounds better than lost.

    I do not get the spasms so for you I would talk with your PCP and think about a mild relaxer so the muscles can relax enough to recover and the spasms should go away, but still might be tight depending how many were cut and stripped and how high they had to go up the neck. Mine was way up to the ears. At first I could not feel the top of my ears. I hope this might help, and if you know where they did the dissection number the picture might make more sence. It will most likely get better, and just keep streaching it during the day so it will give you the most movement. I do hope you get not only the spasms to stop but it to loosen up as well.

    Bill

    image

     

     

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #7
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    The New Normal?

    I'm over 2.5 years out and still have neck/shoulder pain as well as spasms etc. I did PT for a while and do stretches and apply heat when needed. Other than that, I've come to accept it's part of the new normal along with the plethora of other lovely side effects. I did have some relief with acupunture but I just can't afford the sessions and insurance doesn't cover it. If you can find an acupuncturist experienced in cancer patients, it's worth checking into IMO. 

    Positive thoughts and prayers

    "T"

     

  • luv_freedom
    luv_freedom Member Posts: 49
    #8
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    MrsBD said:

    Neck Muscles

    Radiation can cause stiffness too. It's been 15 months since my treatment ended and I am beginning to notice more stiffness with certain activities like shoveling snow or mopping the floor. Keep doing any exercises you've been given, try a warm microwaveable neck wrap, and keep moving. According to one of the therapists I talked to, it's important to hold a stretch for 30 seconds, not just fly through the exercises to get them done. Stretch slowly and gently like a ballerina, not a ninja. It's helped me, but it has to be consistent or the stiffness gets worse. I hope you both get some relief.

    Thanks for the feedback BD! I

    Thanks for the feedback BD! I have to admit I've kind of given up on the exercises and just doing the messages and then work out at my apartment complex exercise room. I'll start doing the stretches again more steady.

  • luv_freedom
    luv_freedom Member Posts: 49
    #9
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    wmc said:

    Sorry Gary

    Yes radiation can cause it, but I never had radiation, Just a neck disseaton on both sides. Oh I also had a laryngectomy so I was cut from ear to ear. Most of the work was done from the left side and of corse the center for the hole to breathe through.  My right side is good only a little tight but my left is vere very tight and still [2 years] numb. I have no feeling fron the center of my chin to my left ear. I have been told, sorry but it most likely always be numb. So much was cut on the left side they took 48 lymph nodes and 38 on the right, all were clear and it was only done as a precaution. I must say I am glad they did, as so many have had it come back to a lymph gland, and I have none to come back to. They did a leval II ~ V dissection, and major work in VI for the removal of the larynx. I take muscle relaxers so I can have more movement for driving, I wont get back to 90% but it is over 45% so atleast my eyes get past 90%. Tho massage will feel good, it won't help my condition, but iw does so many I do recomend it. I streach my neck all day long to just keep the side movement. Well I also have an adhesive base plate on the center over the hole to hold a filter for breathing so it always feels like someone is pulling the skin like they would be stretching it to cover a drum. Most of mine is do to the larynjectomy so I live with what I can't change, and I do muscle relaxers and pain pills every day.  I do use a hand massager and it does help some when it gets real tight. It has a round ball shape and a conical one that helps the most. Had heat, but over the years it has been put in a safe place, that I don't even know about. That sounds better than lost.

    I do not get the spasms so for you I would talk with your PCP and think about a mild relaxer so the muscles can relax enough to recover and the spasms should go away, but still might be tight depending how many were cut and stripped and how high they had to go up the neck. Mine was way up to the ears. At first I could not feel the top of my ears. I hope this might help, and if you know where they did the dissection number the picture might make more sence. It will most likely get better, and just keep streaching it during the day so it will give you the most movement. I do hope you get not only the spasms to stop but it to loosen up as well.

    Bill

    image

     

     

     

    Thanks Bill! Your only the

    Thanks Bill! Your only the second person I know that uses the same description I use "It's in a safe place." I say that all the time LMAO!!

    My insicion was cut right at about the III spot. I would guess the cut to be maybe 3 inches is all. T1/N1/STG2/HPV. Had base of tongue, right tonsil and one swollen lymph node.  Now I'm not sure what that means. Is that just a node or two or a handful? My ear is still numb all around the outer edge mostly and tingles and itches. If I play with it and start scratching it, it gets worse and REALLY itches lol. So I try not to touch my ear too much lol. I read a lot of your posts and read what you've been through. A LOT worse than me. Thanks for your positive atitude!

    God Bless,

    Gary

  • luv_freedom
    luv_freedom Member Posts: 49
    #10
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    fishmanpa said:

    The New Normal?

    I'm over 2.5 years out and still have neck/shoulder pain as well as spasms etc. I did PT for a while and do stretches and apply heat when needed. Other than that, I've come to accept it's part of the new normal along with the plethora of other lovely side effects. I did have some relief with acupunture but I just can't afford the sessions and insurance doesn't cover it. If you can find an acupuncturist experienced in cancer patients, it's worth checking into IMO. 

    Positive thoughts and prayers

    "T"

     

    Interesting! My girlfriend

    Interesting! My girlfriend told me the same thing about an accupuncture and how she went to one years ago and sweared by him. I thought "yeah right"

    There is one close by. Maybe I need to take another look at that. I'm glad I posted this. I now have several things to try.Smile

  • Mike_Thompson
    Mike_Thompson Member Posts: 4 Member
    #11
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    luv_freedom said:

    Interesting! My girlfriend

    Interesting! My girlfriend told me the same thing about an accupuncture and how she went to one years ago and sweared by him. I thought "yeah right"

    There is one close by. Maybe I need to take another look at that. I'm glad I posted this. I now have several things to try.Smile

    Neck Stiffness

    Hi Gary;

    I checked with a contact I have that had the same surgery as I did regarding this issue. He indicated that, yes, he had dealt with the same issues post surgery. He managed it himself with stretching and self-massage. I know the hosptial PT's provided us both with exercises and stretches to do when at home and recovering (we had surgery at the same place). 

    He followed his routine every day and he is now six years out from surgery and has zero stiffness or tightness in his neck.  I, sadly, have not followed the exercise and stretching routines so I shouldn't be surprised that I have neck stiffness. I don't know how long it took him to get that way but when I met him before my own surgery in November 2014 he said that everything felt perfectly fine to him.

    For context, neither one of us had radiation treatment, just surgery. Also, don't forget that nerves were cut during the neck dissection and I, like you, had numbness and odd sensations happening. These seem to have subsided and improved for me and my ear and cheek feel / sense touch much like it did before surgery. My assumption is that nerves that are cut do "try" and find new pathways to do what they did before.

    Anyway, suffice to say that if you / we get back to regular and consistent massage and stretching exercises, it can work. 

    Cheers;

    Mike;

     

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #12
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    I've heard of people using

    Botox injections for the spasms....I don't think it helps the stiffness, but for the pain of a charley horse in your neck it appears it works.

    p

  • donfoo
    donfoo Member Posts: 1,771 Member
    #13
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    me too

    Hi Gary,

    I have tightness from below my ear extending down the side of my neck to about where it meets my shoulder. I feel the tightness nearly all the time but there is no pain. When it starts feeling more tight I stretch my neck often and twist my neck, rotate my head around etc. That does help along with massaging it myself.

    Being a developer I sit in front of screens all day long and many nights. What has worked a lot to relieve the strain is to raise my monitors to eye level so that it feels like I am almost looking upward. This keeps my neck stretched a lot more and also helps keep my back nice and straight and upright.

    Sometimes when I yawn, big spasm hits right underneath my chin, like a charley horse. Pressing hard and massaging it for a bit relieves it. The docs say it is fibrosis from the radiation and is likely not going to go away. Search google for radiation fibrosis and there will be plenty of articles to keep you busy but most first hand reports treat this as part of the "new normal".

     

  • luv_freedom
    luv_freedom Member Posts: 49
    #14
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    donfoo said:

    me too

    Hi Gary,

    I have tightness from below my ear extending down the side of my neck to about where it meets my shoulder. I feel the tightness nearly all the time but there is no pain. When it starts feeling more tight I stretch my neck often and twist my neck, rotate my head around etc. That does help along with massaging it myself.

    Being a developer I sit in front of screens all day long and many nights. What has worked a lot to relieve the strain is to raise my monitors to eye level so that it feels like I am almost looking upward. This keeps my neck stretched a lot more and also helps keep my back nice and straight and upright.

    Sometimes when I yawn, big spasm hits right underneath my chin, like a charley horse. Pressing hard and massaging it for a bit relieves it. The docs say it is fibrosis from the radiation and is likely not going to go away. Search google for radiation fibrosis and there will be plenty of articles to keep you busy but most first hand reports treat this as part of the "new normal".

     

    donfoo

    Thanks for the input don. I had a feeling that this probably wouldn't go away. The massages do help but they don't last long. I'll keep workng on stretching exercises and quit exptecting any dramatic improvement.

    Gary

  • Caper18
    Caper18 Member Posts: 1
    #15
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    Tongue cancer

    Hi I had surgery five weeks ago for tongue cancer my neck is still tight and my tongue is still swollen some my neck feels num it is hard to the touch

  • Curlyn
    Curlyn Member Posts: 189
    #16
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    Hi Gary- I was told that it

    Hi Gary- I was told that it takes a good 2 years for the incision to heal, and that scar tissue can continue to form. Some people produce more scar tissue. So exercises and gentle massaging of the tissue to decrease sensitivity should prob continue for at least that long. *if you had radiation, I was told that it changes the dna and thus effects can go on forever, probably less damaging than even 10 yr ago, with the newer changes. So, then, exercises are important forever, as fibrosis cont to form. It is early days yet so give it a chance to fully heal. Cheers.

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #17
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    Don't Hold Your Breath

    My answer is pretty much the same as the others. It's been six years since my right neck dissection and I still get spasms.  The whole right side is still numb but it doesn't hurt so who cares?

    I guess when my doctor had to cut through all those muscles and tendons they just don't grow back so we're left with cramps, numbness, swelling, etc.  At least my lymphedema went down considerably where it's barely noticable now.  Just try to accept that this is the way it's going to be.  If you're not in pain then be grateful.  What looks funny is if you see a picture of me it looks like my head is about 2" off center to the left.  Oh well, no complaints from me.  As long as all the C is gone that's what's important.

    Maybe you'll heal better than others.  Wait and see.

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