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Muscle Spasms in Neck: Can anyone relate?

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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's picture
luv2cut1
Posts: 285
Joined: Oct 2010

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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's picture
Kimba1505
Posts: 557
Joined: Apr 2010

...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's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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.

timreichhart
Posts: 195
Joined: Aug 2010

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.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

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

MarineE5
Posts: 744
Joined: Dec 2005

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's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

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

feedmindanaochildren's picture
feedmindanaochildren
Posts: 2
Joined: Sep 2011

I also had C&R in 2004-2005 and am now experiencing neck muscle spasms. My wife and I were in the Philippines for two years and I was able to get a two hour massage on a nightly basis from her sister and I found I had very very few episodes of muscle spasms but since we have come back to the US and I don't get those nightly massages I have been getting spasms about ten or fifteen times a day. They don't last long but man are they painful and distort my neck (it looks like I am clenching my teeth when it happens).
Tom
P.S. I like your composite pic.

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

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's picture
miccmill
Posts: 247
Joined: May 2010

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's picture
Kimba1505
Posts: 557
Joined: Apr 2010

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's picture
Hondo
Posts: 5604
Joined: Apr 2009

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
Posts: 188
Joined: Apr 2010

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's picture
Greg53
Posts: 830
Joined: Apr 2010

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's picture
rmdgy
Posts: 22
Joined: Feb 2010

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's picture
buzz99
Posts: 404
Joined: Sep 2010

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's picture
abbimom
Posts: 81
Joined: Sep 2010

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's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

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's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

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!

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I would venture to say that your oncologist is wrong about not to expect it to get better....

What you describe is not what Kim was talking about. It's called L'Hermettes Syndrome or Symptom..very common among us that have had the H&N radiation.

It usually come on a few months after rads, lasting around a year. Then usually going nearly if not completely away.

You tilt your head forward and get this tingling almost electric shock feeling. It can go through your arms and fingers, down your spine through each leg, even reaching your toes....

Don't give up, more than likely it'll go away on its own.

Best,
John

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Hi Kim, outside of the Neck issues Mark is having, it sounds like he is doing remarkably well. I do not have spasms, but my neck and shoulders are extremely sore when I wake up. I do not know if it is Lymphatic Fluid backing up,the way I sleep or something else. I can usually work the stiffness out with a long hot shower and some stretching.

I only had a Modified Neck Dissection, I still have my muscle, but the surgeon had to scrape allot on the musle to get the cancer growth(s) away.

I am guessing this is a nerve issue either from surgery, or might he have a pinched nerve in his Cervical Spine that could be relieved with an adjustment or some Ultrasound Therapy?

Mike

vsudd
Posts: 48
Joined: Mar 2011

Hi Kim, My husband also had a radical neck dissection in May of 2011. He suffers from muscle spasms, especially when cold air hits his neck. You can see the muscle spasm. They took out his lymph nodes and the muscle in his neck and replaced it with his pectoral muscle, He also has pain in shoulder and loss of his right arm. This got worse about 3 months after surgery . His surgeon really has been no help. They don't tell him if this is normal or not. We went to a new surgeon and he said he is no different than any dissection patient. So I have been on different web site, message boards, etc. to try and find some advice. I looked up pain after neck dissection and found studies that show acupuncture helps neck dissection patients. He has been going for about 5 weeks and I do see a gradual improvement. It may help your husband. Good luck. Hope this helps. Valerie

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Not sure if this was already mentioned..can't find my glasses so I couldn't read the posts too well :)
I also have neck spasms, they come on suddenly and I can;t help but make that awful noise, like when you step on the cat.
Maybe it was my co-workers (who have to listen to me) who suggested massage...our insurance covers it, and it has made a WORLD of difference, neck spasms maybe every 6 weeks, instead of daily and the right side of my mouth is now normal, it was turning down instead of up when I smiled and now it is how it used to be. Swallowing improved significantly after massage. I tried working on it myself, but she can move the tissue around in ways that I cannot...
If you can, give it a try, make sure it is medical massage, is a bit different, doesn't really feel too good during the treatment, but worth it for me.
Stacey

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Nice pic

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

Kim,
Tony's pain has been severe since his radical neck dissection last June. He has tried several pain meds with little to no relief. The doctors have told him that it is part of the healing process but I found a study from the University of Iowa that shows a correlation between severe pain and recurrence. Many doctors dismiss the pain. Make sure that you are a vocal advocate for frequent scans if the pain continues. Tony's cancer has returned to another lymph node on the left side again. This is just 8 months post treatment. Stay on top of it!
Denise (Tony's wife)

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Well I sure as heck don't want to read those two things. First and formost, about Tony's recurrence. So sorry to read this. Second - the pain in my neck has been constant.

wifeforlife
Posts: 189
Joined: Feb 2010

My husband still gets what can only be called cramps in the neck... much like you would get in your legs... he doesn't get L'Hermettes Syndrome much anymore... and funny thing about that is when the L'Hermettes started it frightened him... now he misses it some... go figure!..
Wife

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Hi Kim, other than the neck pain, it sounds like Mark is well on his way to returning to normaal. I did not have the radical neck dissection, but I too have allot of stiffness in my neck and shoulders and the area around where i had my surgery is almost rock hard. When I am at the gym, I have been doing some shrugs and some targeted shoulder excercises that seem to add some strength back as well as flexibility. I also swaer by the dry heat sauna at my gym as I sit in there after a workout and do allot of targeted stretching of my neck, jaw and shoulders which if done regualarly for me, it seems to loosen everything up.

I do not have too many spasms, but I do seem to have two spots, one on my neck and one on my chin where nerves are constantly contracting.

Hope this helps.

Best!!

Mike

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Now I am having wicked pain and tightness/cramping on the left side, where the dissection was, but within the last couple weeks, I've gotten them on my right side as well. The intensity of the pain is worse too.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Kimba, yes, my neck on the partial dissection side has gone through the list already given. I have lately been getting less actual pain and stinging in my ear lobe, but the tightness, and infrequent spasms are with me. When I yawn, it cramps on the effected side.
I was just prescribed a new med for it by my new medical onc. I don't know if it will do anything because I just started taking it, and will comment on it if I get a result. It's called "gabapentin." I'll paste a brief statement on it's use taken from a medical info site:

"Gabapentin capsules, tablets, and oral solution are used to help control certain types of seizures in people who have epilepsy. Gabapentin capsules, tablets, and oral solution are also used to relieve the pain of postherpetic neuralgia (PHN; the burning, stabbing pain or aches that may last for months or years after an attack of shingles). Gabapentin extended-release tablets (Horizant) are used to treat restless legs syndrome (RLS; a condition that causes discomfort in the legs and a strong urge to move the legs, especially at night and when sitting or lying down). Gabapentin is in a class of medications called anticonvulsants. Gabapentin treats seizures by decreasing abnormal excitement in the brain. Gabapentin relieves the pain of PHN by changing the way the body senses pain. It is not known exactly how gabapentin works to treat restless legs syndrome."

It also has a list of potential side effects that cover all the legal bases, so they range from drowsiness, to suicidal. Hey, but a lot of drugs say that. Like I said, I'll post my opinion on its effects once I use it a bit.

best to you both, Hal

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I spent thousands of dollars getting a diagnosis and it was in the superthread all along :>( My Dr. says the neck spasams result from irriation/damage to the trigeminal nerve in the jaw from the radiation. My diagnosis is Dysphagia which is in the thread. Only relief I get is from heat and sometimes if I lay on my side. My neck and right shoulder are in a constant "twitch" and they hurt pretty much all the time.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I have not been on the boards for a while and popped on to check out another cancer (friend diagnosed) and thought I would see what is shakin' on head and neck. Glad I did. Mark has an appointment with H&N doc soon and I am going to copy this most recent info from Hal61 and Greend. Mark is doing fantastic, but the spasms, dry mouth, and "herky jerky" (involuntary head jerks) are really his only complaints. But he feels the herky jerky is getting worse. Love all of you guys!!! Mike (Luvulacrosse)love the new pic!!
Kim

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Buzz also has a stiff, tight neck. I have heard that there is a treatment involving botox injections into the muscle. You might want to look into that. Karen

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Hi Kim, good to hear Mark is doing great. I think about you guys and others who are not on for awhile. I feel great too and have my one year exam and CT coming up this week. 3 weeks ahead of schedule as I have or had a swollen area on my gum / tissue behind my wisdom tooth. Of course I immediately paniced and called my ENT.

The new pic is a tail gate party before the Kansas State Football game with my son's Fraternity. He is the kid on the right side.

Keep us posted on Mark's progress.

Best!!

Mike

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

Will almost entirely eliminate those nagging pains. These are gentle practices that almost always incorporate spinal twists engaging the head, neck, tongue, cheeks, eyebrows and eye sockets. Many practices incorporate these techniques as a sort of cool down and that is all he need do to get started. Every other day, 15 minuetes a day, no more pain.

KTeacher
Posts: 874
Joined: Jan 2011

Rat, can you give me more information about restorative yoga. Do you have a DVD or are there classes offered? My last radiation treatment is tomorrow and I am looking forward to feeling better.

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

I am certainly not an expert on yoga but do know a good thing when I find it and yoga really is tailor made for head and neck cancer patients. Just for comparison I had 39 radiation treatments, chemo, and a left side neck dissection. The neck will never be the way it used to be but overall I can feel the difference yoga makes. If I skip yoga just for a few days it begins to tighten and ache and just generally cause discomfort.

I practice yoga at home on dvd. Generally speaking the restorative part I have experienced for the head and neck is at the end of an individual practices in the cool down/relaxing phase where particular attention is focused on the head, neck area. It can get quite focused on the eye sockets, the tongue, the cheeks, the areas where we need to stretch and relax. The spinal twists leading to this portion are of great benefit in stretching the neck muscles. I maintain full range of motion with little discomfort as long as I maintain yoga. I find it invaluable as we can all relate to the painful spasms that can occur after a neck dissection. Additionally yoga will provide countless other mental rejuvenating benefits that any cancer patient will find welcoming. This occurs because yoga forces you to live in the present moment and thus forget cancer for a few precious moments per day.

I searched Amazon for you and they have several dvd's under "restorative yoga" read the reviews and just try one. I also recommend "The GIFT OF YOGA" a Hatha style yoga concentrating on relaxation but also a good workout. I think this is a good starting point for you. Gena Kenny the instructor is very soothing and a good teacher.

I can't say enough about Mr. Rodney Yee. The man is the king of yoga and where I originally discovered restorative yoga buried at the end of one of his dvd's. This guy does everything well and you just can't buy a bad DVD with him in it. Again tons of choices on Amazon. I hope you just try one yoga practice and decide for yourself as it really has paid huge dividends in my recovery. Namaste!

KTeacher
Posts: 874
Joined: Jan 2011

Mr. Rat, Thank you for the reply. I am just finishing my second go around with radiation today. Last year I was pretty beat up, my weight loss was so much muscle, I was weak. I know that I have much to do to get better this time. I had the neck dissection in July and am doing well, just want to do better! I would not know what to look for in yoga, so thank you for some names. We do not go through this alone. I am so thankful for this site.

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