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!!