At the end of my radiation I started having pain that I attributed to a tooth that needed a root canal, but 2.5 months later (and after that root canal), the pain continues. The endodontist squeezed the masseter muscle (muscle that closes the jaw) and it was very painful, so she thinks it's the muscle. My radiation oncologist doesn't think it's radiation related although she won't see me in person and only speaks to me through her nurse. Just wondering if anyone else experienced jaw (muscle?) pain post rads and what, if anything, can be done. She won't prescribe pain meds and never went over any exercises although I've heard people talk about jaw and neck exercises here?

Thanks for any input. I can't sleep, or eat solids, the pain is pretty intense.

Since your oncologist would not see you, what about going to your family doctor? On the one hand, it’s good to see them regularly so that they can follow you progress post chancery treatment, on the other hand, they may be willing to prescribe some pain meds for you or they have somebody else that they can refer you to. We got a lot of help. From my husband’s primary care physician.

Phone consult with my Primary tonight, we'll see if they have any ideas. I'm just sick of being in pain and every doctor wants to point me to someone else.

Primary points me to the ENT or the ER. So frustrating.

I finally saw my oncologist about this as well and he had no answers either, wants to wait for my first scans to see what they show, but won't treat the pain in the meantime.

I think I figured it out for myself, however. After my gabapentin ran out (no one will refill it for me), I noticed that the more nerve pain/buzzing/tingling/etc I experienced the more I tended to stick the left side of my tongue to the side of my mouth and kindof suck on it or clench my left jaw. I think those subconscious actions are causing the masseter muscle to overwork and cause pain. I got more gabapentin from a friend and after weeks of being on it steadily and weening off of my 1000mg of Tylenol and 800mg of ibuprofen every 6 hours (now down to 2 Aleve a day) I'm nearly pain free and my tongue, while not completely comfortable, is quite tolerable.

Wanted to document this for anyone else experiencing it and having useless doctors like me.