Neck Spasms

Hey All,
I'm new to the site and would like to say hello to all of you first.  I came here for this subject specifically in search for some new ideas on pain relief and treatment.  I'm 5 years out from radiation and although happy to have survived I am never happy with the quality of life I'm left with.  Since completing 7 weeks of Radiation/Chemo I have had pain in my neck....not much at first but over the last 3 years I can only describe my pain as exquisite.  I went back to work after but soon found any type of stress brought on these cramps..and yes...even yawning.  I have been unable to relieve myself of them inspite of PT and Botox. Stretching is the only relief but it's short lived and I find myself doing it more and more just to break the cramps.  My Doctors, in my opnion, haven't got a clue when it comes to diagnosing me.  For the last 2 years they have been diagnosing it as Spasmodic Torticulis and giving me Pain Meds.  I couldn't live without them but I hate taking them. Also since I am unable to work I can no longer afford insurance so I am reluctantly on Obama Care..which most MD's don't take.  I'm at wits end and looking for help.  I've read your many of your posts and have tried most of these remedies..other than the Radical Neck Disection...Please if any of you might have any ideas you would be my SUPER HERO..Thank you

Comments

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N

    Welcome to the group and also sory you need to be here. Congratulations on the 5 years.

    I do not have spasms, nor did I have Rad or chemo. I had a full laryngectomy and radial neck dissection on both sides to remove 86 glands. You are right pain meds is not what you need the most. I see you have done the PT and not much help. I use muscle relaxer [flexeril]to help me turn my head and I also use "Activ-ON extra strength. It helps some to where I can turn my neck and then I can do the streaching I need. Now what works the best for spasms is Valum. It will help stop the spasms the best. Once you get them to stop you now can try to streach out the muscle. I realize it is not easy when it is from Rad burns. I also try a electronic massage at times to work out the knots. I know some of the others do yoga, and a form of Tai Chi to help. I don't think I have helped other than to say welcome but others will chime in and I hope they can help. Best of luck.

    Bill

  • Guzzle
    Guzzle Member Posts: 710
    wmc said:

    Welcome to the H&N

    Welcome to the group and also sory you need to be here. Congratulations on the 5 years.

    I do not have spasms, nor did I have Rad or chemo. I had a full laryngectomy and radial neck dissection on both sides to remove 86 glands. You are right pain meds is not what you need the most. I see you have done the PT and not much help. I use muscle relaxer [flexeril]to help me turn my head and I also use "Activ-ON extra strength. It helps some to where I can turn my neck and then I can do the streaching I need. Now what works the best for spasms is Valum. It will help stop the spasms the best. Once you get them to stop you now can try to streach out the muscle. I realize it is not easy when it is from Rad burns. I also try a electronic massage at times to work out the knots. I know some of the others do yoga, and a form of Tai Chi to help. I don't think I have helped other than to say welcome but others will chime in and I hope they can help. Best of luck.

    Bill

    Sauna

    Ive recently been taking saunas along with excercise. Also massage. Spasms have stopped but only 4 months out.

  • AllenWashburn
    AllenWashburn Member Posts: 5
    wmc said:

    Welcome to the H&N

    Welcome to the group and also sory you need to be here. Congratulations on the 5 years.

    I do not have spasms, nor did I have Rad or chemo. I had a full laryngectomy and radial neck dissection on both sides to remove 86 glands. You are right pain meds is not what you need the most. I see you have done the PT and not much help. I use muscle relaxer [flexeril]to help me turn my head and I also use "Activ-ON extra strength. It helps some to where I can turn my neck and then I can do the streaching I need. Now what works the best for spasms is Valum. It will help stop the spasms the best. Once you get them to stop you now can try to streach out the muscle. I realize it is not easy when it is from Rad burns. I also try a electronic massage at times to work out the knots. I know some of the others do yoga, and a form of Tai Chi to help. I don't think I have helped other than to say welcome but others will chime in and I hope they can help. Best of luck.

    Bill

    Thank you for the

    Thank you for the welcome.

    They have prescribed me Flexaril before to no avail.  Haven't been prescribed Valium before but once for a random back sprain which worked on my back but not for my neck.  I don't want to sound negative but I want to bring to light that these cramps are Top Notch Pain...They have resisted every treatment so far except Botox which worked for the first couple of injection rounds but then started to hurt even more and started making it hard to swallow.  The cramps are constant throughout the day and night and I can releive them by changing it up... I.e..If i'm standing, sit...if I'm sitting, lie down.  But they are never satiated and return no matter.  If I don't stretch it out immediately they lock down and then oh man...it's hours before I come back to the world.  People don't understand that this pain blocks everything out..it hard to explain to people that when that happens it's me and the pain...nothing else.  SASH from the chat room told me acupunture might help...I'll be telling my Doctor about it next visit.

    Thanks for the reply..WMC. If you would please..since your disection do you still have pain?  That has been suggested to me but I have heard from other MDs I see that that is not garaunteed to work so I have resisted having surgery and am keeping that option as a salvage method in case my cancer returns.

    Again Thank you

  • donfoo
    donfoo Member Posts: 1,771 Member
    welcome and I get it

    Hi,

    I'm about 15 months post and have a similar side effect but nearly as extensive as you. 7 weeks chemo-rads which targeted BOT and nodes along the right side of neck. No neck discomfort for first 9 months or so then started getting similar neck tightening and cramps and occasional sharp pain though mostly associated with cramp. I stare at a monitor all day so what I do is twist and bend and rotate my neck a lot to keep it loosened up. I also self masage my neck muscles and that helps too. This works 95% of the time but once in a while (couple times a week) I will get a shooting pain and cramp in my neck. Like you it can be triggered from a simple yawn. Some stretching and massage and it resolves in a minute and all is well.

    No pain meds of any kind and I am pain free except for this occasional neck cramp flareup. PT sessions are fine but I think they should show you exercises you can do all the time while away. It is the time in between that needs support even more. Good luck and welcome. Don

  • patricke
    patricke Member Posts: 570
    SPASMS - HYPNOSIS?

    Hey Allen,

    I am very sorry to hear about the on going, excruciating spasms that you are having to deal with, talk about getting kicked in the buttocks after already having been through the beast wars - it just s#*ks (can I say that...).  I have a suggestion that may be able to provide some measure of relief or management.  Thus, I suggest that you try clinical hypnosis with a therapist who is a member of the Amereican Society of Clinical Hypnosis who specializes in pain management.  You can check out ASCH on line to find out what they are all about and then, given all that you are going through to find a remedy, you wouldn't have anything to lose by giving hypnosis a shot.  Most therapist are willing to work on a sliding fee scale basis, and possibly pro bono in some cases, so you will hopefully be able to work out an affordable fee, or who knows, you might find a clinician who takes the Healthcare fees.  At any rate, you can check the ASCH directory for folks in your area to chat with; you never know...    I hope that you find a remedy a lot sooner than later, and I send my best wishes (that's right my best, I save mediocre wishes for distant outcast cousins of disrepute) that you find relief .... 

    PATRICK

  • wmc
    wmc Member Posts: 1,804

    Thank you for the

    Thank you for the welcome.

    They have prescribed me Flexaril before to no avail.  Haven't been prescribed Valium before but once for a random back sprain which worked on my back but not for my neck.  I don't want to sound negative but I want to bring to light that these cramps are Top Notch Pain...They have resisted every treatment so far except Botox which worked for the first couple of injection rounds but then started to hurt even more and started making it hard to swallow.  The cramps are constant throughout the day and night and I can releive them by changing it up... I.e..If i'm standing, sit...if I'm sitting, lie down.  But they are never satiated and return no matter.  If I don't stretch it out immediately they lock down and then oh man...it's hours before I come back to the world.  People don't understand that this pain blocks everything out..it hard to explain to people that when that happens it's me and the pain...nothing else.  SASH from the chat room told me acupunture might help...I'll be telling my Doctor about it next visit.

    Thanks for the reply..WMC. If you would please..since your disection do you still have pain?  That has been suggested to me but I have heard from other MDs I see that that is not garaunteed to work so I have resisted having surgery and am keeping that option as a salvage method in case my cancer returns.

    Again Thank you

    Dissection do you still have pain? YES

    I had the neck dissection not by choise or to eleminate pain, it was done to eleminate the chance of cancer going to my lymph glands. I had two that had some swelling and I was not a good canadate for radiation, and they felt I did not need it. The pain I have is first, my left side is numb and always will be because of all the cutting. I do have most of the feeling in the right side. Second, at about the fith to sixth month came the pain with the tightness and loss of motion. I always had some pain but could turn my neck, which now is hard to look to the left much. I guess I lost 15 degrees to the left and almost the same to the right. 

    This might really be out there, but you have nothing to loose. I have bone spurs in my C5 and C6 in my neck and they were pinching nerves. [2002~2010] It was very painful and felt like I hit my "funnybone" 24/7 and would bring tears to my eyes. Was on Norco to help and surgery was being descused, like right then. It eased up to where I could live with just taking pain meds. It got real bad again in in 2010 and I no longer caired and would do the surgery. [not a good surgery and would loose motion in my neck and it would have to be fussed] So I told the surger I was ready, now he tells me NO, I din't need it and to try an "epidural steroid injection" which goes into my spine at the neck, and IF it worked it would last only four nonths. Cost was I think $3000. [ They give these in the arm $300.00 to treat other problems.] The neck requires a special radiologist to do this. Well, it worked, the swelling went down and then the PT worked because of it. Best part is I only had the one shot and that pain and spasms went away. The MRI showed my bone spures hitting the nerves and cutting the spinal fluid off by over 50% to the brain. Check on your MRI's and see if you muche have nerves being pinched. Mine took out my upper right sholder and right arm, elbow, and down to right hand. If any of yours is from swelling or pinching of the nerves it might work. Ask a nerosurgen about it.

    If they have talked neck dissection it would be done for you only to cut nerves. When the pain gets to the leval you are at, You don't care, it's just make it stop, I know.

    Try acupnture you have nothing to loose and it might help.

    I do wish you the best as I do know pain. [ on a scale of 1 ~10, I have seen 11]

    Bill                              

  • ratface
    ratface Member Posts: 1,337 Member
    perhaps something unconventional

     have occasional neck spasms but nothing like you describe. Your condition sounds very deblilitating. I was also going to suggest accupuncture as Sash did.  It is usually the neck disection which causes the spasms so you don't really want a neck disection. I have had great luck with yoga and Tai Chi. It is not a cure but does alleviate spasms if done with regularity. You would have to commit to a weekly routine and it wil take some time to find a proper routine for you. You have nothing to lose by taking a class. I sense your feeling of despondancy over the issue. I do recall having mysterious joint issues the first two years after treatment in the hands and feet but they dissappeared as mysteriously as they appeared. You seem to be the exception rather than the rule. Have you not had any surgery at all, not even a biopsy?

  • AllenWashburn
    AllenWashburn Member Posts: 5
    ratface said:

    perhaps something unconventional

     have occasional neck spasms but nothing like you describe. Your condition sounds very deblilitating. I was also going to suggest accupuncture as Sash did.  It is usually the neck disection which causes the spasms so you don't really want a neck disection. I have had great luck with yoga and Tai Chi. It is not a cure but does alleviate spasms if done with regularity. You would have to commit to a weekly routine and it wil take some time to find a proper routine for you. You have nothing to lose by taking a class. I sense your feeling of despondancy over the issue. I do recall having mysterious joint issues the first two years after treatment in the hands and feet but they dissappeared as mysteriously as they appeared. You seem to be the exception rather than the rule. Have you not had any surgery at all, not even a biopsy?

    No, No Surgery post

    No, No Surgery post treatment.  I have had a biopsy but it was when I was first diagnosed...back when they told me "you have Bad Cells".  None since diagnosis and treatment.  As far as out of the box and off the wall goes.  I have tried Yoga...I would try it again, and nothing is far fetched.  I'm willing to try anything to escape this exsistence.  I really think they have misdiagnosed me with the Torticulis.  I was reading my charts the other day and notice my Chemo Oncologist stated some Fibrosis was present at post treatment follow ups, which lends something to what I was asking about.  Radiation Fibrosis,  seems to have been brushed to the side by my doctor.  Got a referal to John Hopkins but was denied due to insurance.  Please keep the ideas coming...nothing they have tried has worked so I would love to go to my next appointment and say lets try these.

    Thanks Again
    Allen

  • ratface
    ratface Member Posts: 1,337 Member
    Marijuana

    Considering you havce tried everything so far to no avail I remember a documentary where the only thing that would cure a patients stomach spasms was marijuana. Seems he achieved relief almost immediately.  Would be a fairly simple test to conduct?

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    allen, i just want to welcome

    allen, i just want to welcome you to our family.  5 yrs, that is outstanding.  we all look forword to that anniversary.  i can't really help as I am just now starting to get cramps but they are under my chin.  its like a charlie horse.  they only last a minute or so but do hurt quite bad when they are there.  i'll be talking to my doc about it at my next appt.  if you find a solution, please share.  again, welcome.

    God bless you,

    dj

  • hwt
    hwt Member Posts: 2,328 Member

    allen, i just want to welcome

    allen, i just want to welcome you to our family.  5 yrs, that is outstanding.  we all look forword to that anniversary.  i can't really help as I am just now starting to get cramps but they are under my chin.  its like a charlie horse.  they only last a minute or so but do hurt quite bad when they are there.  i'll be talking to my doc about it at my next appt.  if you find a solution, please share.  again, welcome.

    God bless you,

    dj

    Neck

    I didn't have spasms but neck massage therapy and a compression garment gave me relief from some of the discomfort I was having. best of luck