For those of us with trismus – mine from radiation and eating through a tube for nine months – oral issues are a huge and ongoing problem. For those of us with damaged salivary glands due to radiation, limited oral openings make necessary dental visits both excruciating and frustrating. Add to this the general annoyance of not being able to open the mouth, which creates issues with speech (and of course, missing part of the tongue does not help here), eating, and at times, breathing, and you have a bundle of problems that could very well make someone spiral into depression. It’s very hard to reverse trismus, according to Those In The Know, and there is no surgical repair for it – something that never fails to amaze me, given that there seem to be fixes for just about everything these days. My own dentist is quite skeptical that my extremely limited opening will improve, regardless of therapy.
People who know me know that I just don’t give up that easily. Besides, as an athlete – former or not – I’m well aware that muscles not used will atrophy, and that surgeries (and radiation) will create massive scar tissue. I’m well aware that it takes ongoing, strenuous, and dedicated work to make such things better. That’s just what I’ve been doing.
I have a device called a Therabite, which I have been using as regularly as possible. I had to skip two days after a visit to my ENT, as his exam caused the corners of my mouth to split open (not his fault, he has to wiggle a finger in to feel my tongue), but other than that, I’ve been using it every day to try to passively stretch my jaws. The best measure of progress? I can now slide my thumb into my mouth, horizontally, up to the first knuckle, without the pad of my thumb touching my teeth, something I could not do previously. It may only be a matter of millimeters for me, but that’s the best that can be expected after six years past the end of treatment, and just under six from the point where I was able to have the feeding tube removed and eat via mouth again. One millimeter at a time.
If you’re a head and neck cancer patient, and you stumbled across this place via search, remember this: while I think the medical staff I had was absolutely terrific, I wish they had emphasized more the issues surrounding trismus and how vitally important it is to avoid or at least minimize the impact. If you, like me, are unable to eat by mouth, continue to open and close your mouth as if you were able. Do it as often as possible while going through treatment and while having the PEG in. Not having to worry about this one thing will pay off down the road, trust me. It will probably be painful. Do it anyway. You probably have pain meds from the doctor because of all the other painful issues that arise from treatment. Use them if you need them. Without practice, trismus will sneak up and be on you before you know it. And you don’t want that.