Need help in finding a specialist/doctor to help with Radiation Fibrosis and Severe Trisimus. My radiation ended 12/5/12, and at first I was doing very well with my mouth opening. I am now down to one finger--5mm opening of my mouth. I have tried everythiing from Dynasplint to tongue blades, and my mouth is still contracting. All my current doctor can suggest is putting me to sleep to force the mouth open, and then trying to make sure I maintain the opening. Seems like information on oral Radiation Fibrosis is very little and I cannot find a specialist to help. I called Memorial Ketting Sloan Hospital and they are not accepting patients with radiation fibrosis. I live in Texas, but am willing to travel any where to find a doctor that can help. Any information or suggestions?

The only thing I know that is really beneficial for trismus is exercising for the mouth, mouth stretches, and then Dynasplint, Therabite, wooden tongue depressors, bite plug, chewing gum especially the first several months. There is surgery for this at the jaw joint, coroidectomy, which controls the jaw opening, but radiation is done is such a wide area, that it usually effects more than this area, and not that effective in the long run. There is electrical type stimulation that may be beneficial, which name I don't recall off hand. Did they rule out infection, recurrence, osteoradionecrosis?

I too have severe trismus. Unfortunately I have not been able to locate a specialist. Paul mentioned electrical type stimulation, and he may be referring to VitalStim Therapy which is neuromuscular electrical stimulation for oropharyngeal dysphagia. It was not helpful for me, but my speech pathologist has had success with other patients.

Not called. vitastim, but microcurrent Electrotherapy, but could be the same. pentoxifyilline, presciption drug treatment too.

Where in Texas are you Eric if you don't mind me asking?

Thanks for everyone's responses. I live in Denton County, just north of Dallas. Trismus is so tricky. Right after radiation I was sailing along just fine (as far as opening my mouth). I did the good old tongue blades each day but thought they were a waste of time. Over the course of a few days my mouth went from a 35mm opening to less than 25mm. I then got even more serious about the tongue blades and spend about 2 hours each day with stupid blades in my mouth. About a month later, and over the course of a few days, my mouth opening again shrunk in half. I fought with the insurance company for 4 months to get the Dynasplint covered. Dynapslint helped, and is still helping, but now I am not sure. Over the course of the last few days, I have gone to 5mm before dynasplint, to about 12mm right after each 20 minute dyanasplint interval. My problem is I cannot live my life with tongue blades or dynasplint in my mouth 24x7. I am doing 90min to 2hours every day and still working full time.

I also had a weird infection and osterodonecrosis, which caused might lower right maxilla to become exposed, thus I am almost done with 40 rounds of HBO treatments.

I am just so worried about not opening my mouth, and getting more worried about eating (forcing food thru the small opening). I am becoming less social as I never go out to eat with friends at work or socially now as it is too embarrasing to eat in front of others.

Mine is 3/4 inch opening or 19mm. Maybe the first 9 months are the worst, and can get progressively worse. slightly, over several years.

Eric,

I fully understand about the shyness and feeling awkward in public. I assure you we all have gone or continue to go through that. I'm not sure it ever really goes away but you will feel better in your new skin. Just give it time. Trust me when I say this but we are our worst critics. I have heard that from so many over the years and when you hear it from others it gives a sense of relief to know you aren't alone in these feelings. In time it will improve. You will even find folks in similar circumstances to eat with.

As far as the exercises, as the body heals and things start reconnecting the need to do them constantly will start spacing out. By not being diligent now you could jeopardize maximizing functionality in the future.

I will tell you something not to scare you but to explain something. I have to exercise almost every muscle in my body or within 4-5 days they start shrinking and I lose strength. I worked up this year from a minute to 2 1/2 hrs on the bike. I could not even sit on a bike 2 years ago. I have lost somewhere between 50% and 60% of the muscles in my body but have found that I can work the remaining muscles and they start compensating. The doctors told me a year ago it was not possible. After 8 months of daily exercise they are now very curious how it happened. I cannot get the full connection yet but I won't stop trying.

Hang in there. Stress tends to make it worse, especially the whole citric acid/ATP chemical process in the blood that then releases more cortisol that can create more scar tissue.

Ed

My suggestion would be to break up the stretching exercises to do them only about a couple minutes at a time, 4+ times throughout the day. I would do my exercises everytime I would drive and also while I was at work on bathroom breaks.

Unfortunately, trismus can be caused by deterioration of the jaw muscles and fibrosis which cant always be avoided.

If you havent already sought out a physical or speech therapist, maybe that could help too. I had a great physical therapist who I worked with.

Best wishes!!!

thank you so much for the advice. I think I do need to do shorter exercises, as my mouth is hurting from me trying to force longer sessions. I also think I want to visit a speech therapist. I assume the insurance covers them?

Here's a list of the top rated cancer hospitals.

http://health.usnews.com/best-hospitals/rankings/cancer

I would try calling several. One is bound to have some info and/or treatment options.

Good luck. Positive thoughts and prayers

"T"

Hi
Unfortunately radiation damage continue after u finish radiation treatment.
Can be due to many factors
Muscle fibrosis
Check fibrosis
Scarring from surgery and or infections
A lot of treatments can be offered depending on the cause and the degree of the trismus
My advice is to go see doctors who deal with radiation complications all the time
Pm me and I'll give u few names