Hi Guys,

I was hoping I could pick your brain about a concern I have. As a result of my surgery and radiation, I have very limited tongue movement, and cannot stick my tongue out past the inside of my teeth. Consequently, I compensate for this limitation by moving my bottom jaw a lot to talk and eat. I like to joke that I eat like a cow, moving my bottom jaw in a circular motion. However, I am concerned what the long term effects of this will be to my jaw. Currently, my jaw often makes very large popping noises often when eating, especially when eating chewy foods (I am guessing this is TMJ). I know this can't be good, but I don't know how else I can eat/talk. Does anyone else have long term issues with their jaw? My jaw currently doesn't ever hurt, but I am worried that this is just going to get worse. If anyone has any similar issues, is there anything I need to prepare for, or anything I can do to prevent it from getting worse? I have scheduled an appointment to get an evaluation by my speech therapist, as well as undergo a swallow study (just to make sure everything is still working fine), but I figured I would ask y'all as well.

Thanks!
Emily

Emily, my jaw has popped lik that for close to 9 years now. I think my bite got misaligned as bruxism got worse and chewing tries to correct it. I look around to see if anyone notices it when the sound is particularly loud. My jaw gets sore sometimes when I chew too long.

I had TMJ more than 20 years before cancer, but now it's worse, besides the trismus from treatment, fibrisism when last measured the mouth opening was about 12mm. I've seen several SLP's, been through their boot camp, and did the exercises, which should be lifelong, and can impact eating, speaking, oral care, besides anesthesia options, as you already may know. There is the Therabyte that may help some, but heard Dynasplint is better. I used used my thumb and index finger crossed vs some using stacked tongue depressors, which is better directed by the SLP, if so directed. I assume you were referred to an SLP, and other reasons for TMJ/Trismus were ruled out by your medical team even though out several years from treatment.

Good luck

Thanks for the info! I initially had trismus after radiation, but using the stacked tongue depressors technique really helped eliminate the issue quickly. I met with my speech pathologist, and she did not seem too concerned, as long as it is not causing pain. I did learn though that my tongue/swallowing has gotten a bit weak (although luckily I am not aspirating), so she gave me some good exercises to do to try and strengthen my tongue muscles and prevent the leaking. 3 days into my exercises, I've already noticed I have been able to stick out my tongue a bit further, which is exciting.

She also referred me to a prosthodontist to see if I would be a good candidate for a retainer which would basically extend the roof of my mouth to possibly make eating and talking a little easier (as I have some trouble touching my tongue to the roof of my mouth). If this works, I am hoping it could help my jaw issue as well, as it may make it easier to talk/chew without relying as much on my jaw movement. Have any of you tried this yet?

Thanks!