Hello friends,
18 months out from rad/chemo and I seem to be getting more frequent neck cramps, like "charlie horses" in my neck muscles. Has anyone else experienced this and if so what did you do? I know I had thyroid damage and have been taking meds but don't know if that is the issue. I have been relying on my oncologist for my thyroid problems but will be seeing an endocrinologist soon. Thanks, Bruce

Oh yes... radiation - the gift that keeps on giving. It happened to me both times, and seems worse this time on my right side - right neck/shoulder. Stiff, crampy, feels almost like my head is being pulled down by the tightness. I will discuss it with my R.O. at my next appt but expect physio/stretching exercises will help.

Donna

I'm 9 mos out and have been experiencing exactly what you've described. Sometimes the smallest, least strenuous activity, like walking with my laptop bag over my shoulder, will cause a cramp and send a sharp pain down the side of my neck. Fortunately it goes away after 5-10 secs. This happens about 5-6 times per week. I mentioned this to my oncologist at my last check-up, and he attributed it to radiation damage and did not offer anything to help.

Bruce,

You do not indicate that you had a ND but the 2 previous posters both had ND's so perhaps we are not comparing apples to apples. I didn't have a ND and I never have experienced anything like you describe. Most of the time I read about problems you describe, I see ND in their Signature Lines. Not saying it's not possible because that would be foolish of any veteran of this site but lets see if some non ND posters can confirm what you are describing.

My experience has been the electrical charge down my spine from the radiation, which slowly went away during the first year+. The sudden neck cramping, which does last about 10 seconds, always and only happens where I had my neck disection. My surgeon said it is very common and is from nerve dammage.
Rob

I get a charge like that a few times a day, but in the area at the top of the anneurysm repair. Like someone just got you with an ice pick. It never stays long, just long enough to say,, Hi Fellow, it's me again.

I had a ND and I do experience this a few times a week. Usually occurs when I'm trying to eat/drink something or talking and it can last up to 20 seconds or so, very painful. I've experienced the cramping in my neck, under my chin and my tongue.

I just had rather lengthy discussion with doctors at the James and from Vanderbilt about this issue. Everyone here is correct, to an extent. The radiation fibrosis causes stiffness and thickening of the tissues, which can a) provide a superficial tightening, and b) exert pressure on adjacent nerves. The nerve damage from the neck dissection is an independent comorbidity, particularly if Level V nodes were removed. Both the Spinal Accessory Nerve and branches from the brachial plexus can be involved, as they travel through the SCM, scalene and trapezius muscles.

I have all of the above, and just started an exercise regimen to improve range of motion and hopefully reduce stiffness.

I have been in total misery the last year and each week it gets noticably worse. It started out with a golf ball size knot and cramp on the muscle that goes from the corner of the jaw bone to the collarbone. I would get little spasms, called fisculations that have now progressed to hundreds of little flutters a minute first on the left side, progressed to the right side, across the top of the left shoulder, the right shoulder, the big muscles on the back of the head/neck and now down the entire left side along the spine. When I lay down to sleep at night, my head twitches enough on the pillow that it wakes up my wife because the whole bed shakes. I have been to so many doctors and even found a neurologist that studies post radiation patients using EMG and a couple of other tests. The most fun was the four inch thin guage needle stuck into my neck up through the underside of my chin and through my tongue. After almost 3 hours of testing I was told that I don't fit the "pattern" of the other subjects and when reviewing the sample data I noticed they all mentioned the same things but 5 years after me and they had 45 grays of radiation vs my 72. One doctor even told me they thought it would go away but it gets worse by the week. I feel like what a Parkinson patient looks like with constant movement of the head and you can see the muscles twitching with people sometimes staring at the big one on the left side of my neck when they talk to me. I can go through the list of all the drugs they have tried but honestly no drugs or PT has done anything. The medical explaation is fibrosis of the mylan (nerve casing). In layman's terms, the nerves conduct electricity and the scar tissue from the radiation reacts like a capacitor by stopping and storing the current until it builds up and then letting bursts go through. If anyone ever finds something that can treat this please let me know.

Ed

Hi Ed
i am sorry you are having so many problems,but did i spot a birthday cake by your name?

Many happy returns.

love liz