Hello everyone-

I've got another question for those with trismus (limited jaw opening).
I've heard from a lot of people who used the therabite, did exercises, etc and their jaw opened back up, which is great. Today's question is about the tight feeling in my face.
I'm not sure that the exercises will work, and I may be stuck like this forever. Three months have passed since I got this problem,(due to surgery), so the scar tissue has had a lot time to build up. I've used the therabite diligently every day, but I didn't make any progress while I was in radiation(due to swelling). Now I'm trying to make progress again but it will be two months before I can tell.

Anyway, I'll get to the question- once the trismus sets in for good, do you still feel the "tightness" on that side of your face? I can deal with the limited opening and chewing problems, etc. but it's that feeling like there's a rubber band from my ear to my chin that drives me nuts. Do you get used to that after a while?

Thanks for your input. I know this is a relatively small problem compared to what a lot of folks are going through, but I would like to know what I'm looking at here. There's some chance that it will improve but it also might not.
Mel

Seeing a physical therapist that deals with trismus issues should help. They can do intra and extra oral massage to help improve the opening. They also may apply heat. In the meantime, you might try massaging your face from your chin up towards the top of your head along side of the ears over the saliva glands and back down. This can also help saliva production. Keep up with the therabite and keep swallowing. Find a good PT to speed this along. Insurance should cover.

Take care,
Eileen

Hi Eileen-
I do see a PT, he does "myofascial release" massage which is where they slowly move their hands around to help prevent scar tissue from forming. He doesn't do any internal massage though, although he pushes down on my teeth in the back. I wonder if he doesn't really know too much about trismus, having only had 1 patient before who got it from a blow to the face.
Maybe I should look around for someone else.
Thanks
Melissa

Melissa, I have trismus and that "tight feeling" and I find it is helped a lot by heat. I take one of those fabric neck wraps that is filled with flax seeds (or rice, or something--not really sure what it is filled with actually) that you can heat in the microwave, heat it up, and drape it over my head down next to my ear and thecorners of my jaw. Actually, when your jaw muscles tighten up, they will tighten up all the way to the top of your head--so I get heat all the way down. I keep it on for a couple of mintes and while I'm doing that I practice a. yawning or b. pretending that an egg is coming up my throat and out of my mouth (both of which a massage therapist advised me to do--they stretchmuscles on the inside back of your mouth on the inside that you don't necessarilly use with the therabite.

Last year I was also visiting a PT that did craniofascial massage--if you can find someone who knows how to do that, that is also very helpful.

Nelie

I am more than a year and 1/2 out of radiation and I am making some very slow progress when I do all this.

Our ENT herself has trismus from XBT radiation a number of years ago for an olfactory bulb blastoma. She recommends using the Therabte, massage and also, getting a series of exercises designed for you from a speech/swallowing therapist. It would be best to have someone who has experience in head/neck cancer patients, if possible. Our two local hospitals have swallowing therapists, so maybe try at a hospital. Ask your oncology team for referral.

My husband had a number of exercises given to him which improved swallowing and muscle flexibility in the jaw area. He also used a Therabite. Try doing stretching exercises in the shower under hot water -- I do these for a chronic neck stiffness due to a riding injury as a child.

I might also suggest you try to get someone to see if this is due to overall stiffening (fibrosis) of the muscles or tendons or whether there may be some scar tissue buildup from the surgery that could be addressed by some minimally invasive procedure.

Gail

Thanks for your responses- I will try the heat and keep working on it with the Therabite, and I'm supposed to see the swallowing therapist soon. I had been avoiding heat because my skin was burned from the radiation but it's better now so I can try it.

I do wonder about a simple surgery to release the scar tissue. I also wonder if part of the stiffness is caused by the muscle flap procedure I had done- this is where they cut a flap from the sternoclomastoid muscle(which runs from behind your ear down your neck) and they attach it to the zygomatic bone. It does go over the jawbone, so if that part got scar tissue then that would make sense. The doctor says this shouldn't case trismus but who knows.
They did that procedure so I would not have a dent in my face where they removed the parotid gland.
Anyway, thanks for the suggestions.
Mel