Monica, if you havent done so already, talk with your doc about this problem. Im not familiar with why someone who hasnt had radiation would develop trismus. Im sure there are many other things that cause trismus, I just am not aware of them. Hopefully since yours was not caused by radiation that it is easier to cure.

Perhaps the ND severed/damaged a nerve?

My doctor didn't seem too concerned - just gave me a box of tongue depressors with vague instructions (thank god for this thread or I'd have no idea) and said it should be ok within a few weeks. I saw an acupuncturist the other day who seemed to think it was maybe caused by the trauma to my mouth in general- muscles going on strike. He seemed to think he could alleviate both the nerve damage and trismus in a few sessions, so fingers crossed. I don't see my doc again till after xmas.

My trismus occurred due to the type of surgery and was at its worst prior to radiation. It was first diagnosed and became a concern when I met with my RO for the first time to discuss my radiation. It was so bad that he could not even start my radiation until it improved because I couldn't open my mouth wide enough to get a tongue guard in my mouth. Right then and there he gave me the therabite and had me begin exercises for a week. I made pretty good progress the first month went from about a 14 to a 21 (which is about 2 fingers). This is where I got stuck. I have not been able to make any progress. I have now passed the one year, since treatment. I have learned to eat with this but I worry about if I have to have any dental work. How would they be able to do anything in the back?

Hi Sharon, yes that is worrying that you still have it one year down the track. I'm due for dental work which I've put off till next year - hopefully I'll be able to open my mouth by then



I've just got back from the acupuncturist now actually - it definetly feels loser but I can still only just get 2 fingers in. The acupuncturist said if this doesn't work we could try acupuncture with an electro current to really stimulate the muscle- sounds a bit scary though!

It's hard to work out if its muscle or joint in nature though

My PT told me you can develop trismus if you bleed into any of the muscles involved in opening the jaw during surgery. They are apparently super sensitive to having any bleeding into them and will spasm as a result. Also, if your mouth is out of alignment at all during the surgery, that can cause trismus. He said some people develop trismus just from having their wisdom teeth out!

I am sure mine was caused by the length of time that my mouth was stretched open during surgery.

Sharon

yep, I also read somewhere that wisdom teeth removal can cause trismus but that it usually fixes itself in 2 weeks. Its been 4 weeks for me now. I also think it must have been the stretching during surgery....

Hi, Christine!

Just an FYI: trismus can develop--and does, in a majority of cases--in anybody who's had a muscle cut or their jaw unhinged/muscle stretched during a transoral approach surgery. It's a different process than with radiation, where the muscle tissue is replaced by collagen. In the surgery-related trismus, the jaw muscle is injured and tightens up (just as any muscle does) in an attempt to prevent further injury.

The main difference seems to be that surgery-related trismus is more amenable to treatment than the radiation-related. This is due to the muscle still being intact.

Nonetheless, it sucks.

--Jo

I recently had similar cancer and surgery to yours and am new to the forum. I know you haven't posted in a couple of years, but thought you may still be in contact and wondered how you are doing. Since our type is somewhat rare, I thought it may be helpful.