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