I had cancer of the lower left mandible 3years ago and had a portion of my jaw removed and replaced with my leg bone,the operation went well and it was followed with 35 radiation treatments. About 3 months after the treatments I started experiencing muscle spasms in my neck which got worse as time passed and now it feels like a noose around my neck being tightened all the time.The Rad. treatments also made my throat swell and now I have to have my throat dilated every 3 to 4 months. The Doctors have told me it is scarring from the radiation and there is no treatment for it.I would like to hear if anyone else has had or is having this problem.
Joanie33

Hi. My husband is 2 years out of treatments. He doesn't have the throat swelling but every time he yawns he gets the muscle spasms you are describing in his neck. They stop him dead in his tracks they are so painful.

Joanie,
I have been radiated twice. The scar tissue is terrible. haven't had dialation yet but feel it is coming. In preparation I have been taking lots of vitamin E and Trental to minimize the scar tissue. We'll see.
What does the dialtion process work?
Bill

Did you or gave you tried physio? Stretching the neck and loosening up those muscles should help! I actually force myself to yawn to try and stretch out my throat muscles. I notice that if I leave my head in one position too long my neck stiffens up. Muscles have memory - but if you don't use it you lose it. Try to do neck and mouth exercises daily! I'm only 6 mos out! But physio has really helped!! Good luck!

Hi Cheryl.....Yes I have tried physio, but after some time the staff working on me told me that what I had origonally was lymph and that would be soft to the touch. In the end I was told that what they could feel was hard......so no longer lymph but Fibrosis and nothing can be done for it !! I find it hard to believe that anyone could live with this horrible pain .I cannot take many meds anyway, I always react to them , but SURELY there must be something that can give some relief. I live in Sarnia Canada and my son is in Toronto. I`m serious when I say I cannot carry on living this way !! Constant pain is for the birds, and no quality of life. I had my surgery in March 08 and finished radiation in July 08, and the pain has just gotten worse. I`ve always done the neck and mouth stretching. The only time I am lucky is when I`m sleeping. I am due for another throat dilation very shortly.
Thanks for replying, it is a comfort. I thought I was the only one in Canada Ah Joanie 33

Sorry but massage, pt, stretching exercises, acupuncture, etc, won't help you. Your neck muscles, in the radiation field, have fried by the radiation and will never recover. Instead of being stretchy and elastic, like a rubber band, they are now fibrous. An average persons head weighs about the same as a bowling ball and that is a lot of weight for the remaining functional muscles to hold up. Typically this won't show up until as long as 2 years post Tx. It can be exacerbated by getting your head in weird positions like when you're painting or working on the car, etc. My RO warned me prior to RT that some "texturizing" would occur post Tx. I really didn't understand what that meant until post Tx.

I have a script for Valium and codeine (when the pain is really bad) and take these drugs as I need them. Sometimes I can go for a week or 2 without an issue or medication. It makes it pretty manageable.

I respectfully disagree with Gary on RIF while acknowledging that in 20th century medical schools it was taught that radiation fibrosis is a permanent irreversible condition, despite the fact that its underlying mechanism remained uncertain. In 2005 there was a cleverly titled JCO article The Irreversibility of Radiation-Induced Fibrosis: Fact or Folklore? about using Vitamin E & pentoxifylline. NIH is running a clinical trial on this combo.

But my personal experience is different than the textbooks
Not only were my neck muscles totally fried once, they were fried twice. My neck literally felt like petrified wood. Not an exaggeration - you could thump your fingers on my neck, esp the left side and it sounded just like hitting hardwood. Very very slowly I am regaining muscle tone and function due to daily Yoga and stretching. Half of my neck has regained soft non fibrous texture while the left half which got the bulk of the radiation just feels "tight" and "hard" but not like petrified wood anymore. My ENT is amazed at the progress and attributes it to increased blood flow and stubbornness
It has been 2 and half years after the second round of radiation and therapy and I am still have major noticeable stiffness yet my ENT expected it to get worse not better so IMO there is hope especially with the NIH trials.
Keep the Faith
Charm

Wasn't there just recent news about vitamin E's link to being carcinogenic? I don't think think I'll be charging down the street looking for THAT trial anytime soon. How your muscles take the hit depends on the radiation field size and location and many other variables. The RT also damaged my carotid artery as well. To think that you can get off scott free from a radiation dose, that if it were given to the whole body, would kill you in a matter of days is naive. Other than a muscle transplant, I don't know how you would restore full functionality.

My experience is pretty typical. I am glad that you found something that works for you.

The right side of my neck is Fibrous and each time I go see my ENT he said it gets tighter. I try all the exercises he has given me and nothing works.
I too get the muscle spasms that stop me dead in my tracks.

Radiation is surely the gift that keeps on giving. My carotid artery has gotten off "scott free" even after 4 years from first radiation and going on 3 for the second round. I did worry after reading similar OCF posts implying that this would also be "typical" damage but a full Carotid Duplex test showed peak systolic velocity of 110 in the right one and 124 in the left one (which got the most radiation due to the field placement)

I still suffer from RIF, and I should have added in that I also do specific weight lifting exercises to strengthen the shoulder muscles as well as my neck muscles to compensate for the radiation damage.

Last but not least, as radiation gets better and better focused, we can hope future patients can be spared.
Charm