Hi Everyone-
I just found this site, I have been active on a similar site that's based in the UK which I found by accident. After a while I thought, there must be something similar here in the US!
Anyway, I'm glad to have found it.
My name is Melissa, I'm 33 and I have Salivary Gland Cancer(spindle cell carcinoma). In December they removed my entire parotid gland and the tumor, which had not spread at least to any degree they could see on the PET scan( I have another one in 6 months) I'm just finishing up radiation next week, thank god. I did not have chemo because the doctors could not say that they thought it would even have a 5% chance of helping.
One issue I struggle with is Trismus, I can't open my mouth very wide due to scar tissue from the surgery, if anyone else has that problem I would love to hear from you.

I look forward to talking to you guys.
Melissa

Keep working on the trismus, esp now post-rad -- It snuck up on me but is getting better -- I tried to bite an apple and discovered two things; I couldn't open my mouth wide enough and apples still taste terrible to me

Here's a link to info on this site:

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

Thanks Pete-
Yes, that site is very good. I have a therabite which I've been using. Is that what you used? My opening is about 1 finger right now as I stopped progressing once the radiation kicked in.

My doc gave me a stack of toungue depressors and suggested that I try to slide an extra one in every few days. He said that it works as well as therabite. It has seemed to improve my opening.

Clint

I had a therabite, which I found useful, since I could gently force my opening wider than I could otherwise, but I also use my fingers to gently pull my lower jaw down. I am over a year post-surg., and I still exercise my jaw quite a few times a day. I can open now to about 2 1/2 fingers! I couldn't slide a knife blade between my teeth when I began.

All,

I had similar problems because I was on a PEG tube while doing radiation and the mouth muscles atrophied. What really helped me was the swallowing therapist.

You don't realise how many of the neck muscles are involved in swallowing and mouth function until you talk to these therapists. Not only would she work with me on opening and closing the mouth, but stimulate the gag reflex because it forced the mouth muscles to swallow. Also, neck stretching is very important. We would always do resistance movements where she would push on my head and I would resist her push.

I highly recommend asking your respective doctors if this could help you situation since it did help me get back to normal, whatever that is these days, post cancer.

Jim

Mel...to be more specific about the Therabite...I found that the instructions that came with the device were pretty good. You need to start as soon as possible, and you need to do it for a set number of repetitions, holding the open position for a certain length of time...ie. 5-10 seconds each.....I kept my device handy, ie. on the little table next to my tv-watching chair, so that I could pick it up and do it from time to time. Note: I found that saliva collected on the appliance...it stimulates you to drool!!....so keep a tissue handy. You start where you are.....The first challenge is perhaps to get the mouthpiece inside your mouth. That is progress! Then you exert whatever pressure you are able to exert by squeezing the handles to begin forcing your jaws open. You are actually trying to tear the scarred tissue fibers that are keeping your jaw from opening. For this reason, you need to be diligent and consistent. You don't want to injure these fibers and then allow them to re-heal in a scarred position. Do this many times a day....4-6-8......make a pest of yourself. You will soon see progress....and when you get lazy, you will see a tightness return very quickly. I can't recall exactly when I found that I could get along without the device, but now I do my exercises without the device.....I simply force my mouth open as far as possible, and I gently force it open farther by pulling on my lower teeth. If I do not do this, my jaw will tighten up. I am over the hump now, but I did not have radiation....only surgery....but my surgery went all the way into my (former) jaw joint, since they removed all of my maxilla on that side, so that joint was pretty traumatized.

Check with your doctor first, but if he/she says that it is time to begin to work on the trismus, don't put it off!

There is a Therabite website for ordering more cushions. The cushions are very inexpensive, but you will be astonished....I was.....at the cost of the appliance itself! Your insurance will cover it, but still it is beyond all reason!....$460? $650? I don't recall, but in that range.

Colleen-
Thanks so much. That's just what I needed to hear, is that someone else had it and it got better just folllowing the instructions on the box. Mine was getting better before the radiation, but now there's some kind of inflammatory reaction due to the radiation(or either to me pushing too hard on the therabite) and my Dr said to just take it easy and do the 5 sets of 30 second stretches. I know once I get back to the other way I can start adding opening once again. I'm ok with the idea that I'll have to use it a few times a day forever(or do my own stretches).
Isn't it crazy how messing with those jaw muscles can cause such an uproar? I've heard the same thing happens to people with TMJ and other jaw things.
Yes, the cost of the device is a joke. My husband is works in medical device manufacturing, and he says that thing probably costs $15 dollars to make. Oh well, that's how most things are!
Thanks
Melissa

Hi, Melissa.....You had asked specifically if it took a year for me to get to this point. No, it did not. I am probably past the point of ever going all the way back to a limited opening, but I still do mouth-opening exercises all day long, more from habit than from anything....I do them in the car, and watching tv.....absolutely all day long. And occasionally I get out my trusty Therabite and see how I'm doing. I am often surprised that I haven't been opening as widely as I had thought, as proven by the appliance.

You may not have to do this forever, but this first year if vital if you are ever to regain your full opening...and you DO want as much opening as possible. You want to get those teeth around a McDonald's hamburger as soon as possible!! And you will.