Thanks Christine. I too was very suspicious about what the doctor had said. But friends and family said trust them...it is after all "The Cleveland Clinic" one of the best up there with Mayo Clinic. The doctor who told me it will pass was my Reconstructive doctor. Since my last post I had emailed my Radiation Oncologist and he said it sounds like early stages of Trismus and to go to a dentist who can write a script for a Thera Bite System. Which first off I would not be interested in cause I have zero $$. Secondly from what everyone has said here that the tongue depressors are very affective. I woke this morning with worse results. My mouth can only take 4 depressors. I continue to do the exercises in hope it will help, and from what you kind folks have been sharing with me it should. I will also request therapy from my RO. I will keep you posted on what happens after that. I am scheduled for my follow up on Nov. the 17th. with both doctors. Till then....here comes more weight loss!!! yay!!!!!!!!! So frustrating.

Mparks

Christine's advice comports with that of my RO, MO, ENT surgeon, plastic reconstructive surgeon and my prosthodontist. I find it hard to believe that all of them could be wrong, that every medical study I've read, or the OCF write up on trismus could be wrong. It simply does not get better on its own.
You will feel good to know that my prosthodontist told me that the tongue depressers were just as effective IF USED as the Therabite. It's just that the Therabite makes it so easy to use and measure progress that you are more likely to use it then continue with the discipline of the tongue depressers.
I was lucky that my speech therapist at a local hospital (not a CCC)gave me a free therabite since a generous donor had paid for some to be distributed to head and neck cancer patients and I was there at the right time. Perhaps your other doctor mentioned a prescription in the chance that your insurance may cover it.

Re the Therabite:

If anyone here is not using their Therabite, please consider sending them on to posters that can use one. I was able to IM a poster here on the boards that needed one and sent the one that Bill was no longer using or needing. It doesn't take much postage ...they are not heavy.

They can be cleaned easily and there are replacement pads available. I got Bill's from Ebay so that is a suggestion as well.

They are so expensive and in our case, even with good insurance coverage, the therabite was not covered. So, if you have one ...pay it forward.

Deb

Deb

Way to go. You and Bill are inspirational. It's really good to have posts like yours when oral cancer patients triumph over trismus to the point of not needing their Therabite instead of dreary stories like mine.
My ENT surgeon and prosthodontist haven't given me much hope on emulating Bill's success but I can dream. They seem pretty durable since they are just highly overpriced plastic levers on a hinge so even if I have to do it posthumously, I intend to follow your example. (okay, technically I wouldn't be doing it, but I did update the instructions in my "death book" ).
Charm

As a new tongue cancer surgery receiver and radiation starter on Monday, if anyone has one they are willing to donate I would love to have it. Bite is weak on left side now...will probably get worse with radiation. I know they are expensive...just asking "in case" someone has one extra.

Thanks,
Michele in IL

Maybe we will start a thread that has this info and try to keep it near the top so more folks will see it.

Charm, Bill is indeed blessed with regard to the trismus issue. I actually ordered the Therabite very early in his treatment as a preemptive measure and he did start using it but never really needed to. He has a lot of other collateral damage from radiation but so far, he can open his mouth very well.

I was so very happy to find someone that really needed it. Maybe there are a few more of these Therabites gathering dust.

Deb

Deb was kind enough to give me Bill's therabite. I'll never forget how shocked I was at Deb and Bill's kindness. That kindness sums up the OCF spirit which bonds us together as family. I only used it for a short time due to my teeth being so loose. I ended up giving it to my nutritionist at the hospital. She was working with another oral cancer patient who also had developed trismus. Last I heard, it had been very helpful. Hope they have also passed it on.

My PT who was treating me for lymph drainage and a back problem is also a specialist in treating trismus. I had mild trismus at the time so he treated that also. My treatment included moist heat and intra/extra oral massage of the face muscles. This is a problem that only gets worst. Why your doctors are not referring you to someone is a total mystery. Keep trying.

Take care,
Eileen

I am very surprised and happy to see many people responding to my post! All your suggestions are very helpful and I have been taking tips and suggestions seriously. Since my last post I have been doing the exercises with my jaw such as moving it constantly throughout the day and also using the tongue depressors. One morning I was able to put 6 on each side! But it quickly went down to 3 that same evening. The following morning my mouth would not even open to the point where I could even get 1 depressor in and it hurt more than anything. After doing more research online I have been seeing that people have also been told NOT to force the jaw muscles open. Now this makes sense to me. Common sense tells a person if it causes a lot of pain do not do it. Now I have a very high threshold for pain, and this pain is way out of control! Plus when doing the excercises my cheek and jaw would swell up to the point where I was looking like the elephant man. Needless to say, yesterday I stopped stretching with the depressors...and started sleeping on a heating pad on low and taking three excedrin for the pain and swelling. This seemed to help with both, however I cannot open my mouth AT ALL. My question to all of you....What is better to use? Heat or Ice? or...both at different times of the day?

My family doc always tells me to use ice for swelling. I hate cold so I never do it. When I do the jaw exercises, I first use warm washcloths on my jaw joint by my ear, then I do stretches and tongue depressors. It seems to me that using heat first makes it so much easier for me to do the tongue depressors. Thats how I learned to do it from my PT anyway.

I wouldnt force your jaws open. That sounds like it could do more damage. Its one thing to stretch them open but I wouldnt recommend forcing it. I hope you feel better very soon. I hope you are getting nutrition with drinking Carnation VHC with a straw or another feeding formula. You dont want to get dehydrated or malnutritioned on top of everything else you are goigng thru. Have you tried to take some anti-inflamitory meds? I would ask at your next doctors appointment if that might help.

Wishing you all the best!!!!