Hi everybody,

Mostly doing well 11 months since primary radiation/chemo treatment and 7 months since limited right-side neck dissection.

Recently I've been having my neck muscles on both sides spasm and contract occasionally, and I'm wondering if anyone here has been through a similar experience? If I tip my head down and to one side, or stand up and stretch, occasionally the long muscles running basically from ear to collarbone clench. It's moderately painful.

Considering I only had the limited neck dissection on one side, but this cramping is happening on both sides (although perhaps more intensely on the right) I wonder if this could somehow be a late side-effect of radiation? My radiation was more focussed on the right, but they did zap the left as well just in case.

It's not a huge problem, but it's just one more strange little thing to worry about. Oh, and I've not been as good lately about doing the neck stretching they told me to do post surgery, but again, both sides?

Any thoughts?

Cheers,

-Seth

Seth,

My husband completed his radiation on 12/05/06, he only had radiation and he gets neck cramps. They don't happen that often, but seem to be pretty painful when the do happen. From reading this site I gather they are a fairly common side effect of radiation. He has had both lymphedema treatment with both the exercises and massage and acupuncture and neither seemed to help with the occasional cramps much. The lymphedema treatment was more for his swelling and acupuncture was for his neck and shoulder pains, both seemed to help maybe only minimally. The cramps actually seemed to increase somewhat the couple times he had some form of a steroid injection - a couple times for his skin which was also affected by the radiation and once for his shoulder - it didn't help his shoulder, but did seem to worsen the neck cramping. I think the exercise probably helps the most and I am not sure that my husband would agree that anything helps, but they don't seem to occur that often. Wish there was a better answer.

Yep had the same issue, used to happen quite often, now not so much for me. In fact I can't remember when it happened last but it was something I dealt with several times a day. So in my case it got better and Im 3 years out

Hope that helps

Eric

Thank you, both. It is very helpful to learn that it's not just me, and in Eric's case that it went away.

Cheers,

-Seth

Happens to me all the time. I do not even have full range aof motion anymore. My ENT said that my muscles have become fibrous due to radiation and I have neck excercises to do to to help keep the motion I still have. UGH The gift of radiation. You are not alone.

Wow, I was given neck stretches following my limited dissection, but nothing was mentioned about this as a possible side effect of radiation! My "team" did a great job, but there sure are a lot of things they could have told me that they didn't. Perhaps they simply don't know.

Neck exercises are worthless! Nothing will make the muscle tissues un-fibrotic - it might even make it worse. I got a script for Valium and also for Codiene when the pain was over the top. This condition may get worse over time. It's a small price to pay for being alive. Some have stated that MJ might help.

I was warned about "texturizing" of the muscles, prior to radiation, by my RO as a radiation side effect.

Stily

I had a neck dissection on the left side and radiation to both sides and yes, I had major neck muscle cramps the first year after surgery also. At the time I found that stretching out in the sauna at the gym really help. I also did the same stretch at home. I would lay flat on my back near a wall (sauna or home) and put my legs up at a 90 degree angle, perpendicular to the wall and touching it for support. I'd sit up and lay down. The first two minutes my neck would not touch the sauna bench or my house floor but I'd cradle my head in my hands and gently press until it did. Ahhhhhh.
I do not know if it was the surgery or the radiation but I do know it happened, I was scared for a year about it, and now it has stopped. I still do yoga and pilates exercises which seem to help

Gary is right that MJ does indeed help with such spasms, not only in the neck but the jaw muscles.
Charm

Hi Seth - in the last couple of months I've been having similar symptoms. I'm exactly 2 years out from my neck dissection and will be 2 years from RT at the end of May.

It began with tingling between my shoulder and neck on the left (my nd side) and in the last couple of weeks I've been getting exactly the cramping you describe. It comes out of nowhere - that is, it doesn't seem motivated by movement - lasts maybe 30 seconds and goes away.

So I can't complain. But now I'm wondering what other wonderful late side effects to look forward to!

Hang in there.
d2

Thanks everybody.

Charm, your neck issues sound much more challenging than mine!

David, my neck cramps are triggered if I tip my head down and forward to one side, then the muscle on that side will cramp.

The late-onset side effect issue doesn't seem to have been addressed much. Mine include late-onset peripheral neuropathy (slight numbness in the soles of my feet), possible late onset tinnitis (ringing in the ears), and these neck muscle cramps.

I've read that some people years after radiation have needed surgery to open up the arteries in their necks, so watch out for that one.

Of course, there's thyroid changes which can take a couple of years to appear?

I've also had changes in my jaw such that my teeth don't come together the same way the used to.

My digestion seems to have changed as well, with a tendency for soft stool (hope that's not TMI). Better than being blocked up, I guess.

Then other changes, but these may just be getting older; dry skin and vision changes come to mind.

These are all manageable to me, once I have the understanding to put them into perspective.

It's ironic that as some of the primary effects improve, some of these others come along.

Well, we're all learning as we go, here.

Cheers,

-Seth

Seth! It cant be from old age-you are only 43!!!

Minh

OK, I probably should know what "MJ" is, but I don't and would like to know so I can let my husband know since they seem to help with the neck cramps. Any desciption of them?

Thanks.

Barbara: Maybe some things shouldn't be abbreviated.... the references to "MJ" are for marijuana.... for many years medical marijuana has been said to help cancer patients with nausea related to chemo.... but it has other helpful benefits as well for chronic pain. Some forward-thing states have legalized medical marijuana....don't know about where you are.

Thanks, I did know that MJ was an abbreviation for marijuana and do know it is used for pain relief, appetite etc. with cancer patients just didn't think of it in terms of neck cramps. My husband was on marinol while in treatment, but his oncologist said very clearly the realy stuff is the best stuff. Defnitely not legal here in Mississippi or in AL where his oncologist is located. I just was thinking it was some other type of exercise he ought to be doing. Thanks again.

One reason I use the MJ abbreviation is that there are almost always "spiders" on online forums (there are 2 right now on OCF) and I'm sensitive to the concerns raised by Gary in another post that OCF can't be advocating using something that is illegal (and the Federal gov't insists even medical MJ in a state violates federal law). Using an abbreviation substantially lowers the number of links in google searches etc so things don't get taken out of context.
Brian has been very good in letting EricS and I express our personal opinions on MJ and share what has been effective pain relief for us both and one that is non narcotic and has no known overdose. There is a reason why every state that has approved medical marijuana, even the most conservative list cancer as a valid reason to use it. Lawmakers know from personal experience with their own families and parents what a blessing MJ is for many cancer patients.
Charm

I have frequent neck muscle spasms on my left side. The odd thing is that the only time it happens is when I yawn.

Bill D.

It happened to me a LOT after treatment and I still get neck spasms (which can be quite severe at times). Tried PT - nada.

Yawning used to be quite a painful task but not so much anymore.

A small price to pay for survival.

I can get a neck spasm with my head laying on a pillow. It can be 100X worse if I am in contorted positions like welding, working under my car or painting the house. None of the meds I tried really worked other than temporarily and the Valium actually made it worse after a day or 2. I still have Valium and take one before bed (per prescription) and that seems to work pretty well and I get a better nights sleep. I haven't renewed my Codiene prescription for many months as it hasn't been a necessity - but for a while there I really needed it (I take it like aspirin - only as required -30 pills typically lasts me for 6 months).

I would imagine that when I start putting my WWII, 1942, MB jeep back together, I will need it.

Sometimes I'll have a spasm while I am performing (I am also a musician) and that can be a pain (no pun intended) especially if I'm singing the lead vocal (I also play the bass). But then again, I never thought I would be able to do ANY of those things ever again, so every gig is a gift and I'll live with the pain.

We're all going to have to live with pain eventually anyway.

"Acceptance is the answer to all of my problems today" Paul O. The AA Big Book

I have had spasms in the neck since about 5 months out from my neck dissection. The Physical Torturer said was probably temporary as the nerves were re-connecting but over a year later, they are worse than ever. It is most noticeable laying in bed at night which makes falling asleep fun.

Seth you're 43 , -I am 63, so yes, there are are changes to skin tone, muscle loss, etc., that are a natural and expected part of the aging process. I truly believe that the treatment will age you as well. I will try to address your concerns in the above post:

1. Muscle cramps. Mine didn't in earnest until 2 years out. Up until then I suspect it was more atrophy based from a prolonged convalescence.

2. Ringing in the ears - most likely a result of fluid buildup behind the eardrum. I deal with this 1-2X a year with a course of Prednisone.

3. Arterial blockage. Maybe, maybe not - that is easily tested with a stethoscope or ultrasound. Very few here (if any) have actually had to have stents implanted.

4. Your thyroid TSH levels should be tested every 6 months and there should have been a baseline test pre Tx. It is also somewhat normal for this and other bloodwork numbers to fluctuate a bit and some bloodwork numbers may never be the same as pre Tx. If you had IMRT, it's unlikely that they programmed the beam entry points through the thyroid unless you had really stupid and inexperienced RO's/programmers.

5. Changes in jaw - see item 1.

6. Digestion - who hasn't changed their diet since this? That's a wild card.

7. Dry skin - welcome to winter and HVAC - start using moisterizers. You should be using sunblock EVERY day anyway. Apply the moisterizer immediately after a shower while your skin is still damp. Only use tepid water (never hot) on your face. You might try getting a facial and a consult with an esthetician. I exfoliate several times a week and use a facial scrub, pre-moisterizer.

8. Vision. Mine has done wierd things - it got worse, then improved - go figure. 45 is the age that the optical muscles loose the ability to contract and the typical age for bifocals.

9. You didn't mention your teeth but you had better be taking extraordinary care of them as well.

You're not even a year post Tx yet - What do you expect? It took me 2 years to get back to 85% Patience.

Thanks Gary, all points well made and well taken!

Truth be told, I'm doing quite well now. Maybe it's the return of the sun, or maybe it's just time, but at just shy of one year from end of primary treatment, I'm doing damn well, actually. The last year sucked, but now, well, I think I'm back.

Regarding a few of your points:
Neck muscle cramps continue, but my "team" here is not concerned, and said something about the nerves having to re-grow. Never had a baseline TSH, but I'm no longer exhibiting any of those suspect symptoms (early days, though). I am taking great care of my teeth, floss and fluoride soak every night, xylitol mints during the day (although don't need them as much....but they sure do help at night).

About two months ago I started (slowly) jogging (boy did that suck for about a month), and then a couple of weeks ago we re-joined a gym, and that's going nicely. Unfortunately two weeks ago I sprung my back picking up my motorcycle (all wrong), but it's settling down nicely now. Oh, and my foot's mostly better, too (the bike bit me).

Anyway, it's gotten late here in London, but I'll post a better update soon.

Cheers everybody,

-Seth