Hi all,
Since surgery, I have only been able to open my mouth wide enough to insert one finger between my teeth, making eating anything very challenging ( the norm is two to three fingers stacked)

Radiation made it worse, with the tissues stiffening from the treatment. Even though I want to start trying to eat, I couldn't get much of anything in my mouth.

We just returned home after a three day visit with my Uncle. He's 81, and a practicing (for the past 55 years) manipulative massage therapist. During the visit, he did three 45 minute massage treatments on the muscles of my face and neck on both the affected and the unaffected sides of my face. The results are astounding; my mouth opens (easily, I might add) over 100% more than it did previously.

My entire face feels more "normal" than it has in 6 months. The TMJ style pain I was having is almost completely gone, and I think (as does my Uncle) that with additional work, my mouth will improve even more.

I've been seeing physiotherapists, speech and occupational therapists, dental specialists, ENT's etc. regularly at the hospital for months and the concensus has been" that's it, get used to it". I really can't wait for the next appointment to show them that there is more movement than they thought possible.
Wayne
stage IV SCC, left mandible resected 56 lymph nodes removed June 06 , 30 IMRT finished Sept 06

Try the Therabite (need a prescription from your doc as it costs over $400 for a few pieces of plastic) You do exercises with it several times a day and it can help with the lockjaw. We're finding that docs have very little experience with trismus and the reaction tends to be "get used to it" just as you said.

Good luck!

My doctor said paying the amount of money for the appliance was outrageous. He suggested using tongue depressors stacked together with a rubber band. He suggested I stack as many as I can fit in my mouth and exercise 3 times a day and then the 4th time, at bedtime, increase one tongue depressor. I can't say I do the excercises often due to the pain which I was told to work through the pain. The doctors are happy to give the depressors to me when I visit. Hope that helps anyone who does not have insurance or a huge deductible to save a lot of money. Sincerely, Mary

Wow, Wayne! If you could get your Uncle to teach you this massage, you could help lots of people [and probably make a pretty good living] Can't wait to hear what kind of reaction your "appointments" with the Docs, therapists, etc. bring. We have run into some of the same cold shoulder when asking for help with side effects issues. John's surgeon pretty much says learn to live with it. Good for you. Amy

It's really interesting. My Cousin (son of the same Uncle) is an oral surgeon and the only "legitimate" Doctor that I've encountered that wholeheartedly endorses the value of this type of therapy. He's seen it work over and over again his entire life, and in his 20 years in practice regularly refers patients to his Dad.

It's another one of those slowly disappearing talents that modern medicine views as too archaic. When people like my uncle are gone, so is all that knowledge and skill. It's a real shame