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.

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!!!!

Hi there. I went back to my PT, Mark, both yesterday and today. I wanted to relay additional info he has given me. I asked him if I should take some type of nonsteroidal antiinflammatory (NSAIDs)such as motrin. He did not recommend it. He says recent evidence shows they can actually do more harm, which is in agreement with what a I was told last year by an orthopedic surgeon after developing a stress fracture.

Secondly, to echo Christine (and what you have figured out yourself), if you start having more pain or pain that lingers even after you stop the stretch you are pushing yourself too far.If you are able to start using the tongue depressors again before you get in to see your doctor, maybe these guidelines from Mark will help:
When I initially put the stack of tongue depressors between my back teeth I don't really feel any pain or discomfort (if just doing that causes pain you might be starting with too big a stack). I add one new tongue depressor at a time in the middle of the stack until I feel discomfort-- don't add any past that point. Also, don't forget as you are sliding the additional tongue depressor into the middle of the stack to bite down gently and briefly on the ones that are already in place and then relax before you slide the new one in. If one new one still causes no pain, you can add another. You may have to repeat the bite down/relax process two or three times before each additional one is all the way in place. Once you have added enough tongue depressors to cause a little discomfort (which may be only one depressor) hold that stretch 60-90 seconds, but try to keep your jaw somewhat relaxed while holding it (in other words, don't bite down on the stack of tongue depressors during this hold time).

I am so sorry you are having such a terrible time with the trismus-- I sure hope they get you into a good therapist! I am having good results and Mark is confident they will be able to get a mouthpiece in when I go for my simulation Thursday. I can tell a big difference in eating, too! Good luck!

Thank you Susan. I really appreciate the tips. Last night was a very difficult night. I only got 2 hours of sleep if that. I was in way too much pain. Still am. I am glad you told me about the NSAID's. I was taking Excedrin (3 every 4 hours) for the pain also on 25mcg Fentanyl patch and 10mg Flexeril. I keep shaking, have pressure in my forehead and behind my eyes as well as the back of my head on the right side, swelling of neck and jaw on right side. All my muscles are tight throughout my body, I have become so tense and stressed not only with the jaw but bills, money, insurance, job (if I have one to go back to) things such as this. (sorry to lay it all out there). This hasn't officially been diagnosed as Trismus yet. I have my appt. on the 17th. All signs point to yes though. I have NEVER encountered such pain in my life. (truth)

Don't be sorry about "laying it all out there." No shock that your muscles are so tight!! My therapist treats a lot of TMJ also, and some of what you describe sounds like that-- he was telling me about all kinds of issues with the jaw! Maybe you should just back way off on trying to do much with the tongue depressors until your doctor gets you into PT. Be sure to ask for a referral to a PT with experience in dealing with jaw problems-- it is definitely a specialized area. I know anxiety and stress can aggravate pain, too, and vice versa-- it just turns into one vicious cycle! Hang in there-- the 17th will be here soon!

I also still suffer from Trismus but have about gotten used to it. I can now open 27mm which my Oral Surgeon says is about half or just over normal for an adult male. I had the best overall results using the wooden tongue depressors. My OS had me doing the exercise 3 times per day, 30 minutes each time. I did it for well over a year and was able to stretch from 11mm to the current 27 but frankly just got tired of dealing with it. I have learned to live with 27mm and can eat most things without a problem. I have learned to eat hamburgers with a knife and fork as well as hot dogs on buns. I also can now enjoy a Subway sub again since they now offer flatbread as an option! I do have to first mash it down between my hands before trying to eat.

Good luck,

Bill Dozier

The 17th is finally here-- what did you find out today?

Im anxious to hear what the doc said too. Maybe there is something new that could help all us trismus sufferers. I can always hope

Hey all....sorry for the delay in getting back to you. Things have been pretty hectic with me. I went to have my first PET scan after my surgery and rads, and it came up with something now on the opposite side of my neck where i had the previous surgery and something near my lungs but not in my lungs. It may be cancer It may not be...no one has answers for me, but I did land in the ER a week ago due to a growth on my right neck. Turned out to be an infection. It ruptured through my scar from my neck discection and A LOT came out. Turns out it was an infection that was brewing in there since June. I was put on 2 hrs worth of there strongest IV antibiotics and released, i had a follow up visit with my doc and they are going to watch it closely. They said it MAY be what came up on the pet scan and the CT scan with contrast that i had both done when that infection was at its worst. I have some nodes bothering me on the opposite side of my surgery still and like to think that is the infection doing that and not cancer. We will see. I have another Ct with contrast scan in a couple weeks. As for the trismus....well that has been a fun battle in itself too. I have been told to keep biting down on tongue depressors and i have. It has been opening a bit more...slowly but getting there, can eat some things and not just on that disgusting carnation anymore. Hoping to get it back to normal by xmas. We will see. Will post more as time comes.

PET scans are known for showing false positives. They pick up any inflamation. Hoping for the best results with further tests.

So I didn't have any radiation but still have this problem- yet another side effect that no Dr ever told me about.
I can just fit 2 fingers in my mouth or 12 tongue depressors. This thread has been really helpful- thanks
I'm doing the tongue depressor exersise about 3 times a day with no result yet but it has only been a week since I started. CAn anyone give me an idea of how long it took you before you saw results? Will I ever be able to fit a big sandwich or burger in my mouth again lol!?!! Not to mention other activities requiring an open mouth

Monica,
My results were gradual,but now I have no problem with the trismus whatsoever--so there is hope!!

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.