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

Hi charm glad you're doing well ! I too have found that exercise - particularly stretching really helps - as does yoga and acupuncture. Yoga relaxes you- increases blood flow and stretches those muscles, acupuncture really loosens the area up because it draws blood into the area helping the tissues heal. My neck is always tight in th morning but after moving around for a bit. - including stretching it - it's good! The deep breathing of yoga O2 perfusion), stretching, (regularly) and acupuncture all help with healing, massage also helps as it increases circulation. This is why that article on rehab is so good - all these combined things truly help. I would go for physio once a week - have them tweak my program - once a month - and do my exercises at home daily several times... But I am always stretching my neck! the only really tight spot now is along my scar... But even that has loosened.Take care - hopefully you will find something that works for you. The sad thing is everyone's different - there's no set way of dealing with this. Hugs!

I had seen that article about vitamin E and pentoxifylline some time back, and I also was aware about vitamin E's link to cancer, at least when taking artificially high amounts. But, Charm, I think your main argument is that radiation fibrosis may be somewhat overcome, reversed if you will, and the study does point to that conclusion, EVEN if vitamin E has since been proven to be carcinogenic when taken in that way.

Lymphedema massage might be viewed as either worthless or next to it by a number of persons not only on this forum but medical personnel in the cancer field. Probably it is not recommended often enough by doctors, and that may be why.
I decided I would give it a try because I felt it was harmless enough and sounded easy to do. The lymphedema specialists I consulted believed that it helped prevent fibrosis because it increased circulation. My recent check up showed that I had eliminated all the lymphedema I had two months ago. Where I had some pitting then, now I have no swelling, just skin. Actually my surgical oncologist was surprised. I was too.
Yes, lymphedema can come back, but all I have to do now is maintain it. How can increased circulation, improved by exercise, massage, accupunture, or a combination be a bad thing for a damaged area? I don't think it can.
I like reading about what you have accomplished with your exercise despite having two separate radiation therapies over some of the same area. Very encouraging I would say. Thanks for sharing.
Anne

Anne

Thanks for explicating my point. One of the nice things about OCF is that people usually disagree without being disagreeable. (although I have not been a shining exemplar of that)
Exercise and physical therapy has worked to significantly reduce my original horrendous radiation induced fibrosis.
Other pieces of the puzzle of RIF are the concurrent subdermal adhesions that form which can indeed be broken up by exercise. I think this thread just highlights the lack of medical attention on helping patients thrive instead of just survive as I've posted in other threads.
Keep the Faith
Charm

Gary

Yep, I posted a study from Washington Post and Wall St Journal showing that Vitamin E increases prostate cancer. Males of a certain age such as ourselves are probably not appropriate candidates for Vitamin E treatments. But since the original poster was female, I didn't think it was relevant to her concerns. As you noted, I'm lucky that exercise combining strength and stretching has worked for me. My progress is not optimal but acceptable.
keep the Faith
Charm

I would hope that they would come up with some type of targeted therapy and do away with "slash, poison and burn".

Strangely after going almost 2 weeks without neck muscle spasms this week has been very bad. It can even start up when my head is relaxed on a pillow. Thank God for Valium - its the only thing that will mitigate it. I also have Codeine for when it gets really unbearable...

Gary

Yep, as long as those "targeted" therapies actually work. I'm pretty skeptical now especially with the new findings on Erbitux and Brian's post about our cancer being "smarter" than the developers of these targeted therapies thought.
I'm sorry to hear about those muscle spasms. My best friend in law school had the nickname: Prince Valium (a riff on the comic strip; Prince Valiant). Glad it works for you but wish you didn't have this complication.
Charm

Ok I finally had time to study the article. Evidently it was done on breast cancer patients, with the disclaimer that much additional research was needed.

It's comparing apples and oranges. The head and neck area is much more complex and corresponding anatomy more tightly packed. There are limited access points for radiation due to the proximity of the spinal cord, thyroid, salivary glands and other radiation sensitive anatomical structures. This would result in very high dose rates through those "safe" corridors. And there have been studies done about different dose rates through different structures and what permissible maximums are allowed. How else would they program IMRT? This also serves to further demonstrate the uniqueness of each of our individual treatment plans.

You may wish to glance at this .pdf so as to understand the unique complexities of H&N RT (or just RT in general).
http://www-naweb.iaea.org/nahu/dmrp/pdf_files/Chapter8.pdf

This link is a pretty definitive study on general principles of radiation therapy in the H&N context. http://emedicine.medscape.com/article/846797-overview

I had severe problems with pain while yawning early post Tx (which eventually withered) but the muscle spasm issues didn't really get going until I was 2 years post Tx.

Gary,
Your pdf on the complexities of RT is too heavy for me to read this afternoon, or perhaps I am just getting lazy, certainly impatient. You are obviously a smart guy so I will just take your word on it. The study you read about (breast cancer) I believe included H & N in phase II and earlier, with improvements noted there as well, but perhaps they thought there were more dramatic results for breast cancer so limited the finale to those patients. I just read they noted improvements in the neck structures in prior studies.

It seems to me there is little time spent on researching this issue. I did have this article bookmarked which is a fairly good summary on the topic:

http://jpkc.fimmu.com/fszlx/3-6/13Late%20radiation-related%20fibrosis%20pathogenesis,%20manifestations%20and%20current%20management.pdf

It includes head and neck. It is dated 2003, which doesn't make it cutting edge, but again, not much time is spent on this issue.
I had seen the medscape article.

Best,
Anne

Gary
The good sisters probably forced too much math onto me, but that pdf doesn't sway my opinions expressed in my posts at all. What it did do, is make me very grateful that my RO was able to do that math so my RIF is amenable to exercise and stretching. I wanted to drop him at first but my MO stressed that this RO was unexcelled in mapping out the radiation field despite his issue with patient relations. Your pdf validated my decision to stick with him. Thanks.
What your post also did was confirm our agreement on how our individual TX determine our recovery and problems. I can't help but think that if TORS were commonplace three years earlier, I could be eating and drinking instead of living my life with a G tube. I lucked out on RIF at least.
I think we all can agree that much more consideration needs to be given to this issue of radiation induced fibrosis.
My neck hurts every day yet it seems like I'm supposed to accept this as simply part of the new normal. I do, but it is so good to hear voices like yours.
Keep up the good work brother
Charm

Charm,
We all need and probably do luck out on some aspect of our medical care/results. I'm going to remember that when I get to feeling sorry for myself, as a member of two cancer forums in one year. So that's what your post did for me. Thanks!

I also thought, Gary, when I looked at that pdf that I am so grateful that we have had RO's who know their stuff. I know I did as well, he thought of everything and was well seasoned but also up to date.
Anne

Total agreement about finding competent medical help (why we always advocate finding a CCC or CC for treatment). Personally, I went to UCSFCCC for RT and had the leading researcher for IMRT and H&N cancer treatment. UCSF has conducted many clinical trials for zerostomia and other H&N related areas of concern.

As far as H&N fibrosis is concerned, as in other areas, because of our relatively small numbers, we are going to be piggybacked on to other treatment modalities (except for a very few brave researchers). We wouldn't have access to IMRT if it wasn't for prostate cancer.

So was the breast cancer article merely postulating a correlation between radiation induced fibrosis (in general) or did they actually (and specifically) examine that aspect?

In the grand scheme of things, my fibrosis is an annoyance, to be sure, but it sure beats the alternative...

Gary

Good point about our relatively small numbers reducing H&N specific studies. I was the one "postulating" here, since the article itself explictly lists 3 "unanswered questions", the second of which was
[quote]Second, fibrosis occurs in many different
organs and tissues after radiation. Is it equally reversible in all of them?[/quote]
The footnotes indicate studies from radiation for lung cancer
I admit it's a jump but I had found other studies that did involve head and neck cancer like this one:
Oral Pirfenidone in patients with chronic fibrosis resulting from radiotherapy:. It's too small to be significant with only 5 full participants,[quote] Four of the patients had been treated for head and neck cancer and one had been treated for Hodgkin's Disease. [/quote]
They used range of motion as one evaluative measure.
charm

Other than the skin there are no organs in the radiated field in the typical H&N patient.

I can see where lungs and also the pleura would be of interest in a breast cancer fibrosis study.

I have full range of motion - when it's not cramping up.

Saw the Onc yesterday and he stated that the carotid artery is also subject to radiation induced fibrosis.

That is one of the few specific "what can I expect in the way of longer term side effects" questions that I actually asked during treatment. My RO said it is not necessarily true that I or anyone would have trouble with their carotid after treatment, of course we are talking IMRT in 2011. So yes, it is possible, but it is not a given. He also told me if I kept up with my exercises faithfully during the first year especially I would not lose movement, even if I had fibrosis. Just as soon not have any fibrosis, but while I am wishing, just as soon I had not been sick at all. Cannot pretend it did not happen, so we do our best, and be thankful for what we have.
Best,
Anne

The operative word in Gary's post is "can" as in physically possible. Not necessarily probable and certainly not foreordained. On the carotid threads, I have posted that despite having 95 GY of radiation to the same tumor spot, my cartoid tests show zero RIF issues, zero plaque issues and full normal flow and systolic velocities for both right and left carotid arteries. And that is for IMRT in 2007 and Cyberknife in 2009.
We all can agree that radiation is the gift that keeps on giving. I'm glad that it has not been so generous to me as to some others here at OCF
Charm

My advice is stay in the now and not the "what might be". You can easily drive yourself crazy with this stuff. How much of this is from regular aging and what is from radiation is anyones guess. In the 9 years I have been here there have been relatively few major fibrosis issues mentioned. I don't consider mine a major issue. I have other aging issues that far outweigh it in the grand scheme of things.

I should also mention that I haven't lost any mobility as result of my fibrosis, just occasional and sometimes debilitating neck cramps. My doctor has deemed it "chronic".