Any trismus guru's out there. I have a fast onset trismus that is getting worse. Started three weeks ago and now only 1mm between teeth. Seen hospital physio and started stretching but its getting worse and I cant take the pain anymore. I see my surgeon in 3 days what can I ask him? are ther any other treatments than stretching. It hurts so much and I dont know what to do as every one just says stretch! Its driving me crazy!
Help if anyone has any information it would be awsome!!!
Tone

If your pain is that severe, call your doc right away. Nobody should have to suffer in pain.

As far as the trismus goes, unfortunately the advice from a couple days ago is the same. Im really sorry you are going thru this, I know how bad it can be. Its happened to me. Pain from surgery and still must do light stretches or it will constrict more. There are several others here who have gone thru this. Then there are some who complain about a 20mm opening, they dont realize how fortunate they are. Try the hot wash cloth, pain meds prior and then careful slow stretches. If possible try the tongue depressors or there are a couple devices that could help once you get your mouth open a little more. There is no easy way around this problem.

Hope you feel better soon.

Thankyou Christine, I see my surgeon on Monday so I guess I will be asking for a pain management plan through him or my GP. I am on tramadol but I cant take the pain of this Trismus and if stretching is the only way I will need something strong to get through it. Even when I stop stretching I have a dull pain in my jaw and shooting pain that goes to my ear. It is bad.

Did you gain range of mouth opening back at all? How long did it take if you did?

Thankyou again for answering my post as their doesnt seem to be much knowledge anywhere on it. Even the hospital physio was no wealth of knowledge despite being very experienced.
Kindest regards
Tony

Tony, I didn't have the trismus problem and I'm so sorry to read of your travails. Man! But pain is one thing you shouldn't have to deal with. Tramadol is pretty low level stuff and you definitely need something stronger. At least Vicodin and preferably Percocet/Oxycodone. Ask your doctors about Oxy, it comes in tiny pills (at least the 5 mg ones) and you should be able to get them down. Let us know.

David 2

Tony,
Just wondering how you are doing. Any improvement with the trismus and pain? Glad you got the wristband OK and I have not taken mine off since it arrived from the US.
Please send an update.
Love
Gabriele

Tony, sorry to hear about the pain. I agree with David, upthread. You shouldn't have to deal with this. Doctors seem to swear by tramadol but it didn't work for me when I had my first tongue surgery in a day clinic and ended up in agony. Funnily enough, what did work was panadol and voltaren suppositories.
I really hope you get this sorted soon. Good luck!
Maureen

Tony, I am so sorry to read you are suffering in pain. I take neurontin which is for muscle pain. It works wonders on the jaw pain. Ive had the pain you describe, its awful. Please get something stronger. How about the fentanyl patches? They are long lasting, only has to be changed every 3 days and is the strongest stuff out there. Oxycodone comes in liquid form as does the neurontin. They go down the peg tube nicely. I would ask the doc for the fentanyl patch, the neurontin for the muscle pain and also oxycodone for breakthru pain. That should make you feel so much better.

I still have trismus. I stretch my mouth a couple times per day. Mine is so bad that the dentist cant even get the mold in my mouth to make dentures. I had my teeth removed last year and instead of getting dentures, I ended up getting OC again and no teeth. My teeth were badly damaged by radiation and had to be removed. Overall, Im ok with this. Im very fortunate to even be here after going thru OC 3 times in 3 years. I can work on my trismus and eventually get my mouth open wide enough for the dentures, but thats down the road. First I am doing some reconstruction surgery.

Please keep posting on your progress. You have alot of people here in your corner pulling for you. Sure hope you get some pain relief very soon. Hang in there buddy!!!!

Hi
Im new to this site and was joyful to actually find the "trismus" as what I could find elsewhere is nominal. So concur with all comments about" that might happen" as an after event when the event has happened.

Can anyone tell me what comes next - my mouth is down to one finger opening (post chemo/35 x RT on 18 June this year) whilst its healing pretty well inside (she says, but cant see in there!)since the ulceration has retreated the mouth is tightening up so fast. I have a peg (not a peg, the other thing I cant think of the name right now - is it a RIG). Will I just live unable to speak or eat and without pain????? what happens to teeth issues???????????????? this is what I want answers to. Its hurting pretty bad right now and Im scared.

Hope Ive posted in the right place; well done you guys out there - what you have put so far gives me hope

Fran, welcome to OCF. Please start your own thread so it will get the full attention it deserves and not take away from this persons post.

If you have trismus, you must exercise your mouth or it will not improve. Open as wide as possible and hold it there for several seconds, repeat several times per day. Seeing a physical therapist will also help.

Hi,

I have had trismus since my radiation in '06 (full mouth - 66gy) for oral cancer. I'm at a about 1.5mm - unfortunately it was better in earlier years. I have used and continue to use Therabite system (oral/jaw stretcher) - if I don't use daily - it gets worse. I also tried Dynasplint (ENT recommended based on some patients favorable response) - but found it painful and quit after a couple of months. I don't really have pain from trismus (still alot of mucositis) but it is terribly limiting as far as eating - plus I can't eat anything spicy or crunchy (really miis the chips and crackers) - but of course very thankful to be alive. Hope this helps - good luck - keep trying with doctors'(ask your radiolist too) advise what will help you.