Brian, ,
As of yet I have just been told to stretch my jaw as much as possible. No specific exercises or instructions have been given.

So before I began radiation I was told STERNLY, that I must constantly stretch my muscles that open and close my mouth throughout treatment, no excuses. Also that for a few months after treatment I must continue the process. It was not fun, but today I have full ability to open and close my mouth to pretty much what it was before treatment. ( I think perhaps that some wish that I had less ability to open it so often�) Anyway, the exercise was simple. Go to the drug store and buy a box of wooden tongue blades, usually about $5.00 for 250 or more of them. They are just pine, giant popsicle sticks really. Before treatment I was able to stack 15 of them between my upper and lower front teeth, so that was my normal full open that I was hoping to maintain. It all seemed so simple the first week of radiation, but then it started to become very difficult to open enough to get just 14 in. Painful really. By then end of month 3 of treatment, I was down to 12 max. I needed to try at least 5 times a day, and once before bed, to stack those things in there and I can tell you that it was painful. Once in place I need to hold them there for 5 minutes or longer. You can feel the muscles finally relax after about 5-10 minutes.

So what is actually happening? Radiation treatments cause scar tissue to form between the fibers of the muscles, in particular the masseter muscles that are in your cheeks, but in all of them. Scar tissue is not elastic at all. When it become thick and well developed, there IS NO WAY TO REVERSE THE SITUATION. As a non elastic tissue, you cannot stretch the muscles to open your mouth any longer. I know patients that did not do these stretches, or were poorly compliant as they felt to sick, depressed or whatever to care or comply, and today they can open their mouths maybe a half an inch. They cannot eat properly, talking is difficult, cleaning the inside of their mouth with a toothbrush is problematic, the resulting dental decay is horrible and hard to get to to fix, and on and on. Solid foods? Forget it, blender drinks for the duration.

So when you force yourself to stack the maximum number of wooden blades in there you are tearing the tissues, literally. Micro tears form in the scar tissue, and flexibility remains mostly intact. But you cannot skip days, or not hold the stretched muscles open for the proper time and have success, trismus that is difficult to overcome will set in. When the radiation damage has ceased happening every day, and a couple of months of healing has taken place, you can abandon the exercise. Don't engage in this and you will probably have reduction in vertical dimension of opening, and if the scar tissue gets thick enough I have never seen a person get it reversed successfully. And no, you cannot surgically cut through it as you will also be cutting the muscle fibers you need to contract your mouth. I hope this is simple to understand and the importance of it communicated. There are fancy devices like the Therabite and others that you can buy for several hundred dollars that do a similar motion for our jaw, but everyone that I now that has used the 5 dollar sticks has had success, without the insurance issues to get a device or the out of pocket costs. Hope this helps. Sorry it took so long to come back and post, with everything going on at OCF these days and a short staff, I've been running to try and get to it all.

Brian,
Thank you so much for this information. I will Be doing this for sure From my surgery I already have limited movement of the jaw, however it has been slowly getting better. I will use this method now and hope to maintain and hopefully gain some more movement. This forum and yours along with many others posts are unimaginably helpful. Thank you again for finding the time to respond.

Brian,
Excellent information you shared about preventing Trismus. I was not full aware of this at the time of my radiation and thus have Trismus. I also add to be very careful about when you end the daily exercise as the healing time frame is different for all of us. Be on the safe side and do the excercises for several months. It is hard to tell when one is healed.

Hi there... I know it's late to say this but I hope you are at a CCC - they are the best place to treat this cancer. Rads and chemo will be hard but push through it and do what you can to help yourself. Slow healing may have a lot to do with circulation and overall health. Up your protein, and eat healthfully - even if it means liquifying your food and drinking it. (this will become harder as you go through treatment. Try to stay ahead of the pain, and get as much nutrition as you can now. Welcome and best of luck.

Cheryl,
I am not at a CCC. With hindsight I probably should have gone to one, but I think so far the quality of care and treatment I have received has been good. A lot of the secondary doctors and oncologists I have seen also work with the cancer centers in town. I will be doing everything I can to increase my fluids and protein. Thank you for the input. Now i just need to to implement all of it.

Hi there... again... You can usually tell just by the treatment plan and sometimes the outcome if you are at a CCC - strange as it sounds. That's why I mentioned it. Clear margins are hard to get. The one difference between a local hospital and a CCC is not only the drs. (though if it's a well recognized CCC it tends to attract the best of the best) but also technology and trials - for example - here in Toronto one of the top CCCs in the world is PMH it's in the top 5 and in Canada it's number 1. So the surgeon who did my surgery pioneered a technology that is now widely used even outside of PMH. This technology can locate cancer insitu and allows him to follow it in the body - this is different from normal surgery where the surgeon cuts based on a CT. So basically he is seeing it in real time while he's working. As far as I recall it lowers the recurrence rate by 15 -20% which is no small matter. As I said I know it's being used in other CCCs in Canada at this point - however - budgets and knowledge etc... being a factor with local hospitals - I am pretty certain it isn't being used at that level yet. This isn't aimed specifically at you - just general knowledge for someone reading. And then there are the trial drugs - which are also not available at local hospitals - though I am sure there may be channels to go through where people get in to the program from outside the offering hospital - I imagine it takes a lot to get in and would be faster if actually at the hospital from the outset.

Hopefully that is knowledge you will no longer be in need of, because the rads and chemo will do what it has to to kill the cancer.

All of that said - the real reason I am replying is to say. Implementation is hard particularly if it is not what you are used to. As you move further into treatment you will lose all taste, and your mouth will be sore. Get into the habit of adding one or two high powered protein smoothies daily. They can be bland, and creamy is a better texture, add fresh fruit if you want but at some point the acidity may bother you.

Protein boosts healing and creamy will make it easier to swallow and swallowing is important even if it's just sips of water - radiation burns and damages muscles as well as the mucosa - that muscle damage can be permanent so stretching them and maintaining your swallowing reflex is imperative throughout treatment despite the pain - you need to do it - for now things shouldn't be too bad. Also no matter how crappy you feel if you have a dog or a friend/companion go for a short walk daily - the increased O2 helps fight the cancer. Hugs and best of luck.

Thank you Cheryl,
I hope to not have a next time, but if I do then I will be getting a consult with some of the local Los Angeles CCC's.

I do still have a feeding tube in for when the time comes I can't eat as much due to the side effects. My main issue is hydration as I have never been one to drink water. I am doing a lot better than before but I know its no where near what is needed. I am trying to add some through the tube here and there as well as drinking gatorade, I have high protein shakes i drink and I add calories and whey protein to those. Some days I walk a lot and some I just don't feel it as much. Its getting a little easier to walk normal as my leg is healing more from the fibula flap and skin graft.
Thank you again for your replies. I am determined to fight this, I have goals in life still and I have two young daughters who need their father around for long time. I know a good portion of the fight is mental and I even though I have some down days, the majority of my mindset is positive. This board does help.

Sounds like you are doing amazingly well. We all have down days. It's hard not to - but give it its due and move on and spend the time with your family. hugs... and best of luck.