Hello all! I am writing to find out if anyone may have some info on Trismus and how to go about getting rid of it. I had developed the side effects about 2 months after my last rad. appointment. It started out very bad where I could not open my mouth at all. Then it started opening about 1", just enough to fit one finger in and get some food in. I have been doing my mouth exercises and using tongue depressors to place between my molars in the back to in a way jack open my mouth. I have just begun taking cyclobenzaprine a muscle relaxer 3x daily. I am hoping this will work. Please share any input you may have on this medication, or any other suggestions. Also I was wondering if it would be ok to take tylenol with this medication. Please keep in mind that I cannot afford things such as the Thera-Bite system or things such as that. Would like to hear your stories and suggestions on this matter.

Thank you.

I am having issues with trismus also after my surgery. I have not started the rad. yet and my RO is not sure I will be able to even have a mouthpiece because he doesn't think they'll be able to get it in my mouth. When you say you can't afford the thera-bite system, does that also mean you can't affort PT? My RO is sending me for PT-- first visit is tomorrow and I'll let you know if he tells me anything else you might be able to try. Is the cyclobenzaprine making any difference for you?

Hey there! Thanks for the response. I have asked my doctor if I should have any therapy and he said it is not necessary. So I am without. This is only my second day on the muscle relaxers and nothing has changed as of yet. Ia m hoping it will help. Very frustrating here. I am in the midst of health care coverage change. My employer dropped me after 6 months of leave and they are switching me over to Cobra but I have yet to receive the paperwork. Just another added stress.

I hate insurance issues!! Which doctor did you ask about the PT? Was it your radiation oncologist? That is who ordered the PT for me-- he had no problem whatsoever ordering it. In fact, he was like he wanted it started yesterday! Maybe you should ask your radiation oncologist if that isn't who you asked. Or ask him again if he is the one who said you don't need it. If you still get nowhere maybe your surgeon or your primary care doctor would order PT. Also, I wonder if Cobra would cover the therabite system? I think it is used by a lot of physical therapists, so it might be covered as part of the PT.

I bet your doctor wouldn't hesitate to order PT if it was his mouth that wouldn't open!

Good luck!

I also suffer from trismus. I went to a physical therapist who greatly helped me increase the width of my mouth opening. She would place very warm towels on each side of my jaw for about 20 minutes then do the exercises. Ive found the most success with stacking tongue depressors on each side of my mouth and continuing to add more til it hurts. I had two more rounds of OC so I stopped seeing my physical therapist. The person I saw had experience with other oral cancer patients, most do not.

Unfortunately the only way to fix trismus is lots of work and pain. Its one of the after effects of radiation. Ive asked my ENT and oral surgeon if surgery would help correct the trismus and both have told me no, its scar tissue from radiation.

Keep up the exercises and best of luck with seeing improvement.

Thanks Christine! I have been using the tongue depressors on just the right side (the side I had radiation) but I will do both from now on and also use the hot towels. I really appreciate your input and will keep all of you informed.

Best wishes.

Hi again-- I had my first appt. with the PT for the trismus this afternoon. My PT's area of interest is in trismus and he has done graduate work dealing with it.

I'll share the exercises he has given me to do, but the treatment plan is individualized so please keep in mind these may not be right for you. Apparently trismus can be due to either a problem within the joint itself or with the muscles. He believes mine is with the muscles.

The first exercise I am supposed to do about 10 times a day. I am supposed to alternate between sides so I will end up doing each side five times throughout the day. For this exercise I am supposed to open my mouth and place a stack of about 8 tongue depressors between my back molars. They are not supposed to be tight. Once those are in place, slide an additional tongue depressor into the stack somewhere in the middle as far as I can. When it doesn't feel like I can push it anymore, gently and briefly bite down on the stack. Then relax and slide the depressor in further. Once I have gotten that depressor in as far as I can, hold the stretched position with the depressors in place for 60-90 seconds. Then bite down briefly, relax, and remove one depressor from the middle of the stack by sliding it out. Remove several tongue depressors using this method (remove one at a time). Finally, open your teeth off of the remaining depressors and remove them.

With the next exercise, use 4-6 depressors. Put them in your mouth sideways like a harmonica and hold them gently between the front top and bottom teeth. Slide the upper teeth gently to the right and left ten to fifteen times.

Finally, with the tip of the tongue against the top of the mouth (or make the letter N with a vibrating quality if you cannot put the tongue in that position) open and close the mouth fairly rapidly about 30 times in succession. You look kind of like a fish opening and closing its mouth on this one.

The therapist was very optimistic. He was impressed that PT was ordered so quickly for me-- I told him I had asked the RO to order it after reading about it on this website! Otherwise it may have gone untreated for quite some time!!

I don't know if this info will be of help to you or not, but hopefully you might be able to get some use out of it!

This is very very good, thanks.

Nice for someone to share. Fear of the unknown is our biggest barrier, so the more we know about procedures, the less we fear.

Again thanks

Thank you for the information Susan. I have been doing that tongue depressor exercise and right now I can only get 4 of them between my molars in the back. I guess I have it pretty bad. I explained that to my doctor and he still says ignore it, it will pass, be patient. My family says the same thing. Well, that's all fine and good, but in the meantime I am losing weight rapidly and constantly going to bed with an upset stomach. My speech is way off and the swelling from where they took all my lymph nodes is out of control and becomes very painful when I do the mouth exercises. I really appreciate your input, and I will continue the exercises until I go see both my radiation oncologist and my Reconstructive doctor. My appt is scheduled for Nov. 17th, they both feel this is not an emergency situation and it can wait to be checked out. I don't know if they are just blowing me off or they feel from past cases with patients that this is no big deal. I am hoping it's no big deal. So for now I will ignore it till then but continue the exercises.

Again thank you very much for sharing your experiences with me.

If your doctor tells you that trismus will get better by itself then they dont know what they are talking about. To the family members who are telling you the same thing, they have no clue!!!! Trismus does not get better, it gets worse when nothing is done. I was told it was due to scar tissue from the radiation and that if left alone my muscles would contract even more. Its not something that would be considered urgent but it is a problem that needs attention. Ask for a PT referral from your rad oncologist. If they are familiar with treating head and neck cancers then they would know trismus is one of the side effects of radiation to the head and neck. Which doctor told you it would pass?

When I started my PT, I was only at 4 tongue depressors too. So I know exactly where you are coming from, its awful!!! My PT worked and worked with me and we got it up to 10 which was excellent progress for me. Unfortunately I ended up having recurrances so wasnt able to continue with the PT. Ive recently had another surgery so it will be a while yet before I can resume the PT.

When I did my tongue depressor exercises, I would do both sides at the same time. That would help the side which had the biggest problem. Give it a try and I hope it works for you.

Susan, Im looking forward to hearing more about your PT experiences.