To anyone who has trismus. I dont want to waste my time going to yet another doctor who wont be able to help me. Have any of you gone thru physical therapy for trismus? My dentist referred me to a physical therapist who specializes in TMJ.

I have developed trismus as well. My RO gave me a large handfull of tongue depressors and said that they will do what the expensive devices will do. My dentist said pretty much the same thing. My dentist also gave me a brochure on TMJ with exercises that you can do at home for it. (Possibly the same kind of exercises that you would receive at PT, but I'm not sure) I've been using the tongue depressors and they seem to work ok, but I still can't open my mouth as wide as I used to be able to. I guess I'll just keep working on it. Hope this helps.

Ive done the tongue depressors, can only get 2 in. I also do all kinds of jaw exercises. Im starting to work with a speech therapist and soon the physical therapist. Im hoping they will help me to make progress with the therabite. Im pretty much going from doctor to doctor trying to find someone who will 'fix' me.

I need extensive dental work. I have done HBO which has helped significantly with fatigue and pain. Once I am able to open my mouth then I can get my dental work completed.

I found therabyte much more effective than the tongue depressors.

At about a month after surgery, my surgeon asked if I was working on opening my jaws......I said that I didn't know anything about that, and he said, well you'd better get busy (as if I should have known that!!) He ordered the Therabyte, and I used it faithfully. I feel that it saved my ability to open my mouth. I still stretch and exercise my mouth many times a day, and I even use my hand to pull my lower jaw downward to force it open a bit more than it wants to open. If I had not done this, I would have been restricted forever....and if I don't keep doing it, it tightens up some.....not like after surgery, but some. I even have found that massaging that strip of tissue that holds your jaw together did some good.....at least I imagined that it did. I used my thumb, since it was easier to get it back there, and I warmed it in some warm water.....helped to soften and stretch that tissue, I felt.

He also told me....sorta off-handedly.....that I'd better get busy massaging my neck (again, as if I should have known to do that...scares me to think he might have forgotten to mention that.) now my neck is as soft and pliable as the other side, though there is less tissue there, and I can feel every blood vessel and tendon. I hope I don't run into a sticker bush, or I'll bleed to death! Seriously, I got some lovely cream, and I really "worked it over" like he told me to do, and I still give it a going-over every night when I put "stuff" on my face for night-time.

I found that the Therabyte forced me to work harder than I could have done with the depressors. It is mucho expensive, though, so if insurance won't pay for it, you might consider another method.

If you need it, you should have it, regardless of the price. Don't settle for compromised bite opening unnecessarily!!

Hi Christine,
You do not say where you are in PA. While I did not have a major trismus problems, the PT I go to in Lawrenceville, NJ, just south of Princeton, specializes in TMJ. He does intra and extra oral massage as part of his treatment. He treated me after both my neck dissections and radiation. If you would like his name and number, please email me.

Take care,
Eileen

My mother has developed trimus after surgery in january
She is now on a feeding tube because she cannot open her mouth to eat. She had tongue depressors and the therabite system. Her speech is muffled and she has to write things for us to understand her. He doctors are not giving us any conclusive information as to why she is in soooooo much pain she is on daluadid and has a a patch on her arm for pain. She lost a tooth the other day just came right out from the root. She still spits blood clots. I do not know what to do. We think that after surgery there maybe some gauze packing or some other material left inside her. Would an MRI pick that up. Her doctors are scratching their heads and we need answers. Currently at UPENN in Philadelphia

Has anyone had to use or been recommended to use Dynasplint? I've heard it costs $30k.

What is it Stephen?

Eileen, Im too far from your area. I live over an hour north of Philly. Maybe that would help Ameenah's mom. Ive heard of Dynasplint. A while back someone on here had been posting info on it.

Im still waiting to start physical therapy, its being held up cuz of insurance.

Stephen, you may want to try to contact William Dozier. He had a post a few months back about the Dynasplint.

Will do, thanks

cancer base of tonuge and after Radiation could only open my mouth about half way. I went to PT but did not work. I excercise by extending my jaws 5 or 6 times a day at a count of 15 and I belive there has been some improvement

Frank, thanks for your input, I appreciate hearing from someone who has been there. Ive been doing that for months. I start my physical therapy and speech therapy next week. I was only able to open my mouth about 2 tongue depressors wide now can probably do about 6. So Ive seen an improvement I think from the HBO and exercises. Still have a way to go before I cn open 1/2 way. I would be happy with that.

Christine:
Hang in there, it will get better and will continue to! I was referred to a Speech Therapist who works side by side with my surgeon and she worked miracles for me. Very patient, made me work at it, but gave me some very effective exercises. It was like going to a gym and working any other muscles, at times painful, stressful, not fun, exhausting, but in the end, effective. I still do several of them a little more random than in the past but that coupled with a Biotene gum habit I stay pretty loose and function. I believe it's also helped my mobility with my tongue and definitley helped me with situating solid food and swallowing better. I still have my days for sure, but there's options and hope for improvement!
Best Wishes,
Steve

I have been using a OraStretch for 4 weeks now and have seen a small improvement but need to understand will take a long time. You should ask your PT about getting this device..

Thats good news that the orasure is working for you. Seems once your jaws tighten up its a huge battle to get them moving normally again. For right now Im kinda on hold.

Since last week my throat has been bothering me. I wasnt able to do HBO cuz couldnt clear my ear again. My throat became so bad I was struggling to swallow so I went to my ENT. I have some swelling in my throat and am now on medicine to fix it. If the steroids dont work by Friday, Im going to be stuck back into the hospital (for the 4th time since Ive had cancer).

Needless to say, there went the progress I had made with my physical therapy. My jaw, mouth and throat are all pretty sore so I havent been doing my PT exercises. I can tell that Im sliding backwards and there isnt anything I can do to stop this.

All I can say is ONE DAY I WILL BE BETTER! And it will be better than what I am now, it will be very close to how I was before. Im very determined that cancer will NOT ever get the best of me, I will prevail.

Christine,

Why is your mouth sore? Is that due to the swelling? What has caused the swelling?

Recently Ive been to alot of doctors for second opinions, they all must poke around my mouth and show their trainees too. I now feel a tiny fragment from what I think is the top L molar that was removed before chemo/rad last year. This has been irritated by all the poking around and also by doing physcial therapy to stretch my jaw.

Last week I had a hard time clearing my L ear for HBO, its always the L side that gives me problems. Anyway, I wasnt able to swallow as easily as I had been doing and noticed this progressively getting worse over the weekend. By Monday morning I could barely swallow at all. Could be many reasons, had to turn on the heat cuz it got so cold, started using my fireplace again, just plain old infection that went to my throat. Who knows.

My ENT scoped me and said throat is swollen and gave me predisone to fix it. Said it should work in 24 hours. Told me if its not better by Fri. then I need to go back into hosp. for IV steroids which is inpatient. Last time he gave me a deadline, I got stuck at the hospital for 10 days before they let me out. Needless to say, Im pretty miserable dreading another hospital stay since my throat hasnt improved much at all.

Now, since Ive skipped HBO and PT, my mouth is back to 4mm opening. Ive lost everything I worked so hard for and now probably will need to go back to the darn PEG feedings again. Im struggling to swallow chicken and stars soup. Also Im back to my 3000 calorie chocolate peanutbutter milkshakes too, at least my taste is here so I know what tastes good.

So sorry but I hope things improve and you don't have to go back to the hospital.

Christine,

I am so sorry that you seem to be slipping backward on your recovery efforts...so frustrating.

Sending prayers and positive thoughts your way,

Hugs, Deb

I will be ok, I always am ok no matter what. The anger of 'why me' never hit me throughout all my battles. I was always the one who said, whats next, lets fix this so I can move on. My goal has always been to get back to normal and regain my life again.

This set back has me discouraged. I worked so hard the past few months and now have gone backwards to where I started again. My thinking has begun to change from the 'lets fix this' attitude. Im very troubled by how quickly the past 4 months of work has just erased itself like it never happened.

The part that bothers me the most is that Im losing my positive attitude. I guess everybody gets to a point where enough is enough and reality hits you hard. Im sure glad that I have the kind and wise people of OCF to listen to me. It makes me feel like Im a big sissy to complain since there are so many worse off than me. Trying to rationalize this isnt always easy.
Thanks for listening

I've had setbacks through my road to recovery, and it is easy to get discouraged. I guess I felt that if I do everything the doctors tell me to do, I will make continued progress. But unfortunately there are a few bumps in the road.

I'm sure this setback will be shortlived. You are under good medical care, and you do have the right attitude (even though you lost if for a few days), and you can turn this around. We are all praying for you.