Have any of your specialists tried the term 'referred pain' on you yet?

I was going through some very severe jaw pain over a year ago, and for quite a while. None of them could figure out just WHAT was causing it, and they all had (opposing) guesses, none of which seemed to be right when I'd try the suggested treatment. It's rather a long story on all that, but my best guess at the time was trigeminal neuralgia (which would have nothing to do with your tongue, so don't worry about that, I don't think it is the same nerves) ... they kept thinking it might be my teeth ... we all know what radiation does to those ... and that the tooth pain was being felt in my jaw instead. That was the closest anyone came to a consensus, but no treatment found.

Anyway, a year ago I had to have all my teeth out prior to getting dentures. While that's been a nightmare and a half all on its own, it did have one benefit ... somehow it triggered something that caused the jaw pain to stop. I really don't think it was the teeth, but maybe there was something further on in the jaw that got fixed in the process, who knows. But .... to make a long story a bit shorter ... 'referred pain' would be the key term. Your tongue is where you're feeling it, but the pain may be coming from another source altogether. Considering what a number the radiation does to our muscles and nerves, might that be a possibility? Something tightened up that's pulling a nerve in your tongue, even, and causing pain ... wouldn't show on a scan but sure could hurt.

If that's a remote possibility, and you do still have any scar tissue issues, one option might be to see a speech / occupational therapist. The one I saw to help with swallow way back, after my tube was out and I was doing better, had the most marvelous massage exercises for my neck (scarring from the neck dissection on top of the radiation issues), and I bet some of that would help, if there was some sort of strained muscle or nerve pulling away inside. I know that's a long shot, but at least it wouldn't hurt, not the way some med side effects do. (She had a colleague who was a master at calming migraines, too ... man, I wish I was still a patient there!) She also had massage techniques for the tongue scarring itself, some of which made the oddest nerve twinges ... so in a way, those might even help in a backhanded diagnostic way ... see if anything sets off a similar reaction, to help narrow it down?

It may sound weird, but I hate to think of you or anyone else suffering with no ideas left to go on, so I toss this one out just in case it gives some ideas.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery