Hi, I haven't been here for months but I knew I could turn to you all for some answers. Recently my neck muscles started twitching. No pain. I could see the muscles moving around on the side of the neck where the radiation was concentrated. Now, the muscle will not stop twitching and pain is in the shoulder. The muscle is getting very weak to the point I can not lift up my toddler anymore. Anyone get this side effect? I am 25 months post radiation and I can't understand "why now."
Thanks so much. Mary

Mary,

I have the same thing. My doctors have scheduled me for intense physical therapy and say if that doesnt work bo-tox(spelling) might be the answer. I have a CT of my head & neck just to make sure there was no funny business going on. All clear just radiation damage I guess. I can live with it but is it a pain in the A%%. I cant look to the left without it totally spasing out.

Thanks for letting me know about you. I was wondering am I experiencing this because of something else. Flexeril has not calmed the muscle at all but I can only take it at night because I have children at home with me and I think I need to be awake and alert. LOL

Mary, can you find the time to get some specialized physical therapy? I can fully appreciate your hesitancy to not be on any drug that might make you less alert with kids in the house- but you're being in pain is not good either. Here is a silly question since you have kids- are you getting enough rest Amy

Hey Robert,
How would Bo-Tox help? I'm also having TONS of trouble with my neck. It's hard as a rock, stiff as a board and the spasms are horrible. My neck seems to always be twitching and I feel like I want to keep my head dipped into my left shoulder now. So, off to PT for me. Let me know the story on the botox, I thought that was for wrinkles??

Amy, at least I think I get enough sleep. 7-8 hours but it is interupted a couple times a night.I have only talked with my rad. oncologist on the phone about the muscle twitching. He called in the flexeril so I thought I would just wait till next month for my followup to tell him more about it. His RN did tell me most people do need PT. But I can't understand why this is occuring 2 years later! I was hoping it was radiation related and not a tumor causing this.
Mary

Mary1971,

This can happen years after radiation. My oncologist has been watching for signs of degeneration in the neck/upper spine, and it definitely got worse in the last couple of years (I'm now 17 years after the end of treatment). I had an MRI and a nerve conduction study earlier this year to check for the exact location of the problem, and then went for 2 months of PT, which did help. It also gave me a better idea of the kinds of exercises I can be doing on my own to try to head off further problems with pain and numbness in my neck and arms.

Cathy

Cathy,

Can you describe the excercises.

Mine is awful too Minnie. Just awful. It hurts and spases all the time and is rock friggin hard. Loosen up when you rub it but that is very temporary. I need to look down and to the right constantly to get the spasms to stop and am always rubbing my neck.

Also, it makes you start thinking things if you know what I mean? Now, I realize that I just had a CT and there is nothing there but still.
I was wondering if you could share your exercise regiment with the group? Could help cheapskates like myself.

Thanks,
-rh

Robert,

Here are several of the ones I can do myself (I'm dealing with a combination of neck stiffness and some muscle weakness, combined with the cervical spine issues):

Turn your head slowly to one side (about 90 degrees) and hold that position to a slow count of five; then turn to the other side and hold to 5 -- repeat this 4 to 5 times.

Tip your head slowly down as far as you can toward one shoulder and hold to a slow count of 5; then tip slowly toward the other shoulder and count to 5 -- repeat 4 to 5 times.

(I hear lots of crackling sounds when I do these!)

There's also a set of isometric exercises to build strength:

Hold the palm of the right hand against the right temple and push as hard as you can with your head against your hand for several seconds; repeat on the other side.

Hold the palms of both hands against your forehead and push hard against your hands for several seconds.

Also, if you work out in an exercise room, it helps to use the machines that build some strength in your shoulders and upper arms.

Some of the other things that helped had to be done by the physical therapist (there were a couple of times when he was turning my neck so hard I thought it was going to snap, but after 4-5 weeks of sessions twice a week, I could really feel a difference in strength and flexibility).

I suspect that some of these routines may be too much to take on for people who are still healing from recent surgery, so I would still advise checking with a PT about the kinds of exercises that might work at specific stages of recovery. Be careful out there!

Cathy