Hi folks, I may end up posting this question in "after treatment issues" as well but I thought I'd put it here since it is about a emdical procedure. I am 2 and 1/2 years done with treatment and have fiarly bad trismus. I can get my mouth open wide enough to accomodate a soup spoon with stuff on it and a child's toothbrush but I can't quite open it wide enough for the dentist and dental hygenist to get to the back of my my back teeth well in terms of cleaning, let alone if they had to get a drill or something in there, let alone if they wanted to take xrays. Also my cheeks have a lot of scar tissue and are very tight against my teeth so that often I have little ulcers from the teeth rubbing against them.

And although I am using a flouride rinse, I am having some signs of problems with my teeth. I also have bad jaw cramps onece in a while which i assume is related to fibrosis in my jaw from the radiation as well.

Anyway, my ENT, who is local, not at a CCC, but did train at a CCC, and did my partial glossectomy and neck dissection almost 3 years ago, says he has done surgeries before where he goes in to the area where the scar tissue builds up around your jaw and basially scrapes it out. He says he would do it with an oral maxillofacial surgeon who is local and who I have also seen (thought not, unfortunately, until after I'd had radiation but that's a long story) who has a good amount of experience treating oral cancer and knows alot about things like the risk of ORN etc. he thinks he and this other doctor could help reduce the tightness of my cheeks too.

He says this surgery is painful and it takes a while to recover (so if I had it it would be over my suymmer vacation. oh joy.). He doesn't think I'd need HBO therapy beforehand as he doesn't believe there is any risk of ORN--they wouldn't be doing anything to the jawbone except scraping the scar tissue away from it and there is no open wound to the bone that needs to heal which is what I understand can cause ORN.

Anyway, I'd like to know if anyone else has had or even heard of surgery like this, was it efective in reducing the trismus, how bad was it in terms of pain and healing time and any nother info. you think may be relevant.

I can't say I'm thrilled about getting it done locally but that's more about the hospital than either of these doctors who are very good doctors. But that hospital has made, or almost made (but not quite, thanks to me being an advocate for myself) several errors in my encounters with them, some of which were or could have been reasonably serious. Just today i went for a scheduled mammogram and had to argue with them about which breast they should be looking at (finally asked that they call my doctor which got it straightened out). I won't even go into the other stories.

But the hosptial I go to in Bosotn that helped with surgery on my stricture doesn't even have an oral maxillofical surgeon on their staff, let alone one with experience doing this surgery.

Nelie

Nelie, I share your interest in this. My jaw moves very, very little. I have just enough room to fit in the upper denture (substantially modified) and really wish I could open much wider. My docs have told me that the issue isn't just the scarring in the joint and tendons, but that the muscles themselves have been permanently alterd. One doc used this metaphor: Prior to radiation the muscles are like rubber bands. After, they are like shoe leather. For this reason they counseled me against a surgical repair because even if loosened, the muscles responsible for jaw movement have been altered, and there would be some risk of 'slack jaw' - being unable to comfortably keep my jaw closed when those muscles were at rest.

One doc suggested that jaw muscle stretching and regular exercises would restore more freedom of movement and that process would not risk the 'slack jaw' side effect. Physical therapy was recommended. I did a bit of it, and it really helped. My insurance pooped out on it so I quit going, but I would love to go back for more. Maybe my rich uncle will leave me some.... Probly no. I'll be interested to hear of your decisons and progress my friend. My thoughts and heart are with you, Tom J

Tom, He didn't mention the "slack jaw" possibility. That sounds nasty. I'm going to have to ask about that in a lot more depth.

Nelie

Hi Nelie-
I had pretty bad trismus after my surgery(tumor removed from underneath my jaw). I did see a few different doctors to see what they recommended. One of them was an oral surgeon (not connected to my cancer docs at all, I met him through my dentist), and I was surprised that he seemed to know a lot about trismus. It was about 4 months past my surgery/radiation and my mouth was 20 mm(about 1.5 fingers, ok for eating but tough for dental work), this is after 4 months of using the Therabite device 10 times a day.

He said I basically had three options (in order of

Tom-
Have you tried the Therabite device? I'm not sure how it works if you have dentures, but there's alot of info on the site about it

http://www.oralcancerfoundation.org/dental/trismus.htm

It basically stretches your mouth open the same way a physical therapist does, except you buy the device and then you always have it with you so you can use it frequently throughout the day. I used to use mine all the time(a few minutes every few hours) but now I use it once in the morning and once at night. I'm not sure if it is still useful for you since it has been a few years since your surgery but it may be worth checking out.
Melissa

Melissa, Therabite is a great tool. I've used mine off and on since this all began. I may not be using it aggressively enough, but I do make tiny gains when I use it regularly. I'm concerned about the 'leather vs rubber band' issue. Is it scarring that limits the motion, or is it the permanent change in the tissue of the muscles?

Even if I get my mough open further, will the muscles be flexible enough to maintain the range of motion, or will they just settle, again, into a short range cause thats all they can do??!! I am most interested to hear more about the experiences of others. The reading on trismus is not satisfactory. Tom J

I used the Therabite. Insurance paid for it, which is a good thing, because that seemingly simple device cost many hundreds of dollars. I credit its use with my being able to open my mouth now. I kept it on the table beside my tv chair so that I could grab it many times a day. If my surgeon had not recommended that, I would now be left with an opening hardly wide enough to insert a baby spoon. I used it religiously, and yes, I tightened up between uses.

Now, I no longer use the appliance, but I do stretch my mouth open, even using my hands, many times a day, and I can open to about 2 1/4 fingers. That's probably about as much as I could open before surgery.

Stay with it....and good luck.

Hi Tom-
I think its both the scarring and the change in the muscles, that they become hard and leathery, and that limits the motion. I developed scar tissue in the muscles because of the surgery, and then the radiation made them stiffer on top of it. But even in the scar tissue/leathery parts there is still some room to make it more flexible. The therabite pushes your mouth open, and breaks a little bit of the scar tissue or stretches it. Then you keep on using it to maintain whatever you have gained. It will always stiffen up again but after a long time you get some permanent gain.
The first few months I used the therabite, I would press "until you feel a stretch"(that's what the instructions said). It opened it up some, but not all the way. When I started doing it harder it opened it up several more milimeters within a few weeks. It took a few months of pressing harder to get the bigger opening to stick. When I say pressing harder, I mean, you press down on the lever until you feel a stretch. Then press a little harder and see if you can open it wider, then more, then more. For me, it hurt the way when you have a charley horse in your leg, you take a deep breath and think "Ok, a few more seconds, a little more, I can do it". Just like gym glass.
I took tylenol afterwards if I was sore. But after about 2 weeks if doing this I found it wasn't really painful, and I could press the therabite lever all the way to the bottom, that's as far as you can go.
I used the therabite 8 times a day or so for 8 months. Now I use it twice a day and I also stretch my jaw all the time with my hand absentmindedly, in the car, etc. However, it's not how many times a day you do it, less would probably be just as good, it's that when you do it, you really sit down and give it a real effort.
So..long story short , I don't know about the surgery, etc. and the slack jaw thing sounds scary. But I love the therabite, and if you still get benefit from using it now, it's probably not too late to try to get more out of it. Also, if you measure your opening once a day and record it you can really see if you are making progress. I measured mine at night after the last stretch because that was the biggest number. Just be careful if you try pressing harder with dentures that they don't slip or anything. I don't know too much about dentures and it might be different than with you own teeth. My goodness, I have written a book here
Melissa

I have a similar experience, but not with the therabyte. I started with tongue depressors (also called tongue blades). After surgery I could not even put the small finger into my mouth. Now I can put 3 fingers (around 4.5mm opening). A few times a day I force my mouth opened as much as possible. I also play with the tempo of the opening until I can fit the 3 fingers. If I don

Melissa, Thanks for your post. Your success is inspiring. I think I may have not used enough energy with my Therabite.

Jose, I too did some PT and found it wonderful. I would love to continue. Perhaps in this round of Tx I will get some more.

Nelie, Let us all know as you learn more.

My heart is with you all, Tom J