after a few radiation treatments i am having mussle spasms in my neck, is there something that i can do to relieve the spasms ?

Hi Skifan,

Could you give us more history such as type of cancer, any surgeries, treatment plan such as how much radiation or any chemo? Everything you can tell us. You can get an idea from the signatures of the people posting on this board. You can add your own signature info by clicking on My Stuff at the top and then clicking My Profile. At the bottom you can create your own signature with info.

Ditto what Tom said. Also, have you had a neck dissection? All of these things factor in.

I never had any spasms from the chemo or the rad and I didn't have a ND either.

It took 2 years before the fibrosis in my neck (from RT) got to the point where I was having fairly consistent neck spasms. I tried PT with limited success and now they just give me scripts for Valium. I would ask the techs about your neck position and the spasms - something is not right. Maybe they got the headrest backwards - they did that to me one time. In any case you shouldn't be having spasms this early in the game.

thanks to all who gave their time in responding. I had my left side parotid glan removed on feb. 14. i started radiation last thursday at a rate of 5 times per week. on my 3rd treatment i experienced spasms on the area being treated 6 hours after treatment. no chemo. skifan

I just asked Dan this question and he said he gets them under his chin after yawning... But they must not be too bad because he's not mentioned them before.

What a great topic. I have spasms that I now know are called fasciculations. The muscles on the left side of my neck, the big ones in the back of the head, the left shoulder all twitch as many as hundreds of times per minute. After going through PT that only made it 100 times worse, I found a neurologist that has conducted numerous studies on post-radiation issues and many people 10 years out from radiation develop a syndrome that he has discovered. I was just lucky because it happened so soon, I guess. I had an EMG and then another test where they stick a needle into the neck and all the spasm areas, even the tongue from under the chin with a sonagram type noise when the muscle fires. I have tried the standard drugs, Neurontin, Gabapentin, etc., but nothing has worked and likely will work.

I took Gary's advice long ago and a valium/vicodin at bed time keeps my neck from flopping off the pillow and allows me to sleep without the dog and wife complaining about me not laying still!

A good night's sleep keeps the spasms down most of the day so I do not medicate until after work.

I still get massive spasms that create a fist sized ball in my neck sometimes but they massage out and only last for seconds.

I would be glad to offer the study if anyone is interested.

Ed

David,
the best is yet to come. The RT damage to the traps doesn't come into play for as long as 2 years post Tx. Radiation truly is the gift that keeps on giving. The spasms I have been getting are progressively getting worse as time goes on.

Michelle,
I had pain on yawning early on in Tx and immediately post Tx as well. Most of that is from the radiation burns and mucositus. it could hurt like hell at times.

Ed,
I use codeine instead because Vicodin has acetaminophen in it which is bad for the liver. PT didn't help me either but they did come up with suggestions for pillow heights depending on how you sleep which were useful (lower for stomach sleepers and higher for side sleepers).

Thanks Gary! I have had such remarkable results from the Hep C stuff and all liver functions are normal since 2003. I still limit the acetaminophen to 2 grains per day. My father is a pharmacist and we have been having lengthy discussions about codeine versus vicodin/loritab and he says codeine may cause more constipatin when taken longer term and oxycodone is considerably stronger. I have even gone back to the Fentanyl patches although only at 25 mcg/hr. The pain gets really tough sometimes.

The pillow thing isn't an issue because I can only last about 45 seconds on the side because of the shoulder surgeries. I use the pillows from Brookstone that really work well plus the wierd wheat or something like that pillow that conforms well.

I'm sorry to hear yours is progressivley worse but I know exactly what you mean. I have gone to a c-collar for all airplane trips and extended car trips as well. I just know something has to work.

Gary,

You're trying to cheer me up during the throws of tax season, Right??

Ed,
maybe you're a candidate for botox injections.

500/5 Vicodin is 500mg of Tylenol and 5 mg of oxycodone (but you knew that).

I disagree with him in that all narcotics, synthetic or otherwise can cause constipation.

Valium works for me alone most of the time - I don't use the codeine unless it is particularly gnarly.

My liver function has progressively improved as well, but my personal protocol is not to ingest anything that could further exacerbate the damage.

Gary and Ed,
How do you guys get your doctors to give your medication to help with the spasms? I have been complaining about them for over a year now and all I ever hear is "go to PT". PT might loosen up my neck but it doesn't stop the spasms. It does make it tough to sleep and I have a difficult time sitting and watching my girls play their sports because of the position of my neck. I end up having to stand during the games. I would love to have some medication that could relieve it.

Minnie

I am fortunate that my doctors understand fibrosis caused by radiation damage. The last time I saw my MO he asked me if I needed any scripts but my GP has been pretty good about renewing my Valium and Codeine scripts. I usually just email her when I'm getting low and they mail it to the house (exception is the codeine -I have to pick that up at the hospital pharmacy due to federal regulations). Like Ed, I did try PT and attempted to train different muscle groups to take up the slack but it was unsuccessful. I believe that long ago I sent them some links about fibrosis and muscle damage from RT. Last time in they offered me Flexeril but I declined it as it is stronger than Valium and Valium works just fine. I can function just fine on Valium but Flexeril made me groggy and I would also get a hangover from it. I may attempt to extend my SSDI when it expires in October.

Gary - have you tried Skelaxin? I was just talking with my sis, who is a PT, about the different muscle relaxants and we both agreed that Skelaxin seemed to be the one that works the best with the least amount of side effects. Flexaril makes me feel horrible... groggy, dry mouth, etc..

I'm perfectly content with Valium but I will ask about the Skelaxin.

I did pursue the botox injections but after the EMG and this other thing using about a 3 or 4 inch fine needle into my neck, arm, shoulder and believe it or not through the bottom of my chin into my tongue, they determined it was more motor related and botox would not help. They mentioned Gabapentin and Skelaxin but after Neurontin, Flexiril and about 5 others I ended up believing the Valium does the best. I did go back to Fentynil patches but only 25 mcg/hr and I use 10/325 Vicodin and 5 mg of valium at night. This seems to give me good sleep and I function fine at work although I would like to use nothing but that doesn't seem to be in the cards, unfortunately.

Minnie, you should just mention to your doctor that you know other people that have had significant relief with the Valium/Vicodin combination just before bedtime and he should do it. My spasms started out with the jaw literally locking with a big lump like a fist where it locks. Now I just get a constant firing like twitches that gets ooos and ahhhhs from all the doctors when I just ask them to lay their hand on my neck. It is definitely fibrosis from the radiation. I have now had neurological tests done and in the end they attribute it to radiation but have no known treatment. I opted for a good night's sleep. If I don't get that, the twitches are a series of many muscles many times per second. My wife says it looks like Parkinson's when I am sitting at the computer. The term now I've learned is "fasciculation". That is just so much more sexy than muscle twitch! It's nothing close to the infamous "Sabrina's butt dance" if you remember that one (Lhermitte's).

I am so sorry I forgot to mention the Kansas Jayhawks won the National basketball Championship on my 52nd birthday, April 7. Happy belated birthday to me, happy belated birthday to me...happy belated birthday to me-ee...happy belated birthday to me!

Thinking of all of you but especially Gary and Minnie right now!

Ed

Greeting's Everyone,
As Ed mentioned in the above post, I'm in my third rad TX , 1 Cisplatin/Decadron/malatron?/and came out of the local K-mart today after shopping for roses and began to get the pins and needles all over my body , then the rt neck/shoulder spasm started .
Ricky
____________________________________________
DX: 2/7/08
SCC rt tonsil
Rt: neck disection 3(L) removed
30 rads@200 IMRT/3Cisplatin
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I found this thread when I did a search for botox injections. I just read an article from the otolaryngology dept of the university of iowa about the use of botox into the SCM muscle to alleviate spasms due to late effects of radiation. I thought I had struck gold, but now I'm not so sure. I have been having progressive pain in my neck for a while now, but i'm not sure if they are spasms. It is very tender, almost like trigger points, but my neck does not twitch. my trapezius at the base of my skull is super tender as well as where the neck and shoulder meet. This is all on the opposite side of my disection, although i was radiated there. Ive been to neurologist and had an mri done of my neck. the mri states i have some mild bulging in c4 through c6, some neural encroachment etc. everything is mild and the dr suggested elevil, which i found out is an antidepressant used for nerve pain. i've asked my mo for pain meds throughout the last several months, and he basically refused. these are the docs who only prescribed me liquid vicodin during the worst part of treatment. I guess i didnt complain enough. well i'm certainly making up for it now, but no luck on the meds. i take .25mg xanax from time to time and raid my medicine cabinet for old pain meds(i've been taking a 1/2 a darvocet every other day, but just took my last one last night). i contacted a pain management center at a local hospital and asked about botox injections and the woman had no idea what i was talking about . does anyone know where i can inquire about this? also, Gary, do you take the valium and vicodin at the same time and can you function on that? Also, my left throat, tongue, sinus and ear have continued to hurt(just a dull ache/pressure), pretty constant now. they assure me it isnt a recurrence. could that be a muscle spasm as well? i've read about glossopharyngeal and trigeminal neuralgia however my pain in not sharp and severe, so maybe atypical? Lastly(i promise), i read a study on a drug combination of pentoxifylline and vitamin e for radiation induced fibrosis. anyone ever hear of it? sorry so long, i seem to be my own advocate these days. thanks.

Kelley

I take a .25 xanax twice a day and usually split a percocet in half for 2 times. As for darvocet, to me it's about as good as aspirin. just doesn't kill pain at all. The Drs are supposed to control your pain with meds if necessary.

Kelley,
I mainly use 10mg (blue) Valiums for the spasms and Codeine, occasionally, if the pain is too great. I don't take more than 30 codiene a year and less then 200 Valium in a year. I am prescibed to take 1 Valium a day for sleep, but I don't always.

I can't take Vicodin because of my liver issues.

They did offer Botox as an alternative but I am saving that option if it gets more unmanageable.

Gary,
Who would be the most likely doctor that would do the injections? I just spoke with the pain management people and they only do steroid injections. Jim, I asked my medical oncologist for ultracet last visit which I believe is the most mild narcotic and he refused. He said if I had cancer...but I dont. I feel I am being undertreated. I'm not narcotic seeking, I just want to be able to function. BTW, glad to see you up and posting. I dont post often, but have been following your progress. You've got an amazing attitude and are truly an inspiration!

I keep looking for that LITE at the end of the tunnel but it keeps backing further away. LOL Gonna have to get one of my guns and stop it. Got a call from the director of the Cancer center today and he wants another PSA test real soon. Geez, they hardly let one heal and go after another.