Radiation fibrosis of the neck

I rejected the idea of "the new me" from day one. When I first was diagnosed my doctors and even many people on this board would talk about "the new me" and it was usually a way to brush off a lessened quality of life post cancer treatment. I simply refused to allow myself that excuse. The old me didn't want a new me. It was why I fired my doctors that wanted to do neck dissections and found a cancer center that didn't cut first. It was why I refused a PEG tube and a chemo port. The old me looked at those things as giving in to my cancer. The docs couldn't give me a single medical reason as to why I needed to have a dissection prior to treatment or how a PEG tube or chemo port was medically necessary at this point. So, I took charge of my treatment and rejected those things. I wasn't being stubborn, I was being the old me that didn't want to be a "new me" with hoses coming out of me and unnecessary scars and side effects and distractions. But, i did ask what can be done to lessen any side effects. My nutritionist and rehab docs were both very happy with my decision not to do a PEG tube. They said that constant use of your neck and throat were key to avoiding complications and radiation fibrosis. They said, making yourself eat 4x a day and neck exercises 20+ times a day should ensure I did not have neck/throat issues post treatment. And, sure enough, 6 months post treatment and I am 100% the old me (just with a tad bit drier throat - and virtually no epiglottis [from the radiation]).

As terrible as it was - and I can't express enough how terrible it truly was - I forced myself to use my throat throughout treatment. I was radiated in 3 places; base of tongue and either side of jaw. My wife had to walk outside while i consumed my calories because it was too much for her to watch. I'd scream, I'd cry, blood would come out of my mouth, I'd stomp my feet, etc. But it was what had to be done.

All that said, I did meet several people who did suffer from radiation fibrosis. Two in particular had extremely stiff necks they attributed to simply not using their throats at all the entirety of treatment - and were not encourage to use their throats by their docs. Both are in their 70's and fell into deep depression. One snapped out of it and started doing all kinds of rehabilitation and can now eat soft foods with lots of liquid to push it down - but he does choke some. Docs think it may get even better over the next year. The other, continued in his depression and will probably be on a feeding tube for life.

Don't give up your refusal to have a old you life again. Your fight simply isn't over yet. 99% of that fight now is in your head. Stay positive and improvement will surely be the result.

At 5 years out, there is stiff and tighened muscles running right where the radiation ran along my neck. Fortunately, it is managed by daily neck stretching and self massaging. Often times it is a week between spasms so I feel very lucky. The doctors say this is normal; I could be referred to PT but my DIY PT works fine. Everyone is different and as long as we do as much as we can to stay as healthy as we can, that's the end goal. Good luck. don

Twostepr said:

Hi DanceSkater Jan

Hi Jan,

My swallowing problem came from being between a rock and a hard spot. I could not swallow at all after my first surgery in March of 2017. They had cut most of my tongue out and rebuilt it, including the "flap" that covers your trachea when you swallow, using tissue from my thigh. Four weeks later, right before and up to about the first two weeks of radiation, I had got to the point that I could drink liquids if I took it slow, but I had to use a syringe and squirt the water in my mouth because I couldn't tilt my head back due to the incision across my neck from the disection. At that point, everything got too irritated from the radiation and I quit trying to swallow rather than dive into the pain meds. I had been cut from ear to ear because they removed lymph nodes from both sides of my neck. I started developing "wooden neck" as they call it, or radiation fibrosis, along about that time. My neck started getting hard, stiff, and really sore. Well, three months after the radiation, I was doing fair but then I had to have a second surgery on my neck for a "look/see" because I still could not get my breathing and swallowing separated due to the flap being too big. So they cut into the same area again. More scar tissue, more "wooden neck". Well, Doc developed his plan, and I had my third surgery in Nov. 2017 where he trimmed the flap so I could breathe better. Cut again, same areas. More scar tissue, more wooden neck. When that healed, I could breathe great, but I still could not swallow because of the scar tissue. Well, Doc decides that he can help me swallow by moving my voicebox under the flap a little closer which would open up the top of my esophagus. Surgery number four. Same area, more scarring. That was March 15th of this year. Just a few weeks ago.

At this point, the entire front portion of my neck feels more like my knee cap or maybe an elbow but it is extremely stiff and surrounds most of the muscles in my neck as well. Movement of my head is limited. Side to side is fair at best but up and down is really tough. But four surgeries in a year plus the radiation has really done a number on things. I have pretty extreme scarring, or fibrosis, wooden neck, whatever you choose to call it. Supposedly, physical therapy and exercise is the only way to get things moving but so far every time I got healed enough to start any kind of exercising or therapy, they decide to cut me again. But, at this point, I think they have cut about all that they can cut. I think it's up to PT and exercise now. Once everything heals from this last surgery, I can at least get started on that but right now, Doc says no stretching or pulling on things until the surgery heals. 

I live in a very small town SC. I have to drive three hours to MUSC in Charleston because that is where my surgeries were done. Closest place that could rebuild my tongue rather than just take it out. I did my radiation and chemo at SCOA in Columbia. (SC Oncology Assoc.). I have been scheduled to start PT on my neck three different times so far and have had to stop each time because of another whack at me by a doctor. About the closest physical therapist that can do pt on the neck area is Columbia, about an hour and a half away. I still see my Dr. at SCOA every four months now just so they can bill my insurance, and I still have a couple more visits to make to Charleston, but I think everybody is about done with the chop and hack part. Now I'm at the point of getting some movement going to see if I can get some swallowing going on. Now it's down to finding some way to loosen up the scar tissue. The Dr.s are saying PT and exercise. I think I would settle for a neck removal and just live on my "tubes" but I plan to push hard on the therapy and exercise as soon as I feel I'm healed enough to not pull something loose.

Hopefully, I'm there. I have already started stretching some but I know now that I have a ways to go. I have to get my neck moving a lot farther than it is now, and some muscles loosened up. I have a little farther to travel down my highway but I'm hopeful, and trying to stay positive. 

Sorry, I didn't mean to write a book. And yes, I dance. Not much in the last year now, but pretty much all my life. I'm about ready to get back to some. And a cup of coffee would be nice. When I can swallow again.

You've had  4 surgeries on the same location and some of them on radiated skin in one year !!!  OMG !!   I can't even imagine.

Did the doc make a new epigottis for you ?   If it works, will you be able to get the trach tube removed ?   My epiglottis is misshapen and does not work all that great due to radiation.  I think something happened to a tongue nerve during my left radical neck dissection.  That's part of the reason I have trouble swwallowing.

I also use Isosource 1.5 Cal.  Never had any problems using it.   I do a  "feeding" in about 10 minutes.  Have even done a few in parking lots while on a trip.

I know you asked about vitamin E and aloe in another post.  I'd go ahead and use it.  It can't hurt and if nothing else it will help your skin.

Don't go overboard on the exercises until you see a therapist.  The therapist will teach you the exercises that are right for your condition.

You are an inspiration !!!

Jan