Hi, had a visit to an ENT I thnk is brilliant the other day for pain under my jaw that doesn't go away combined with a couple other things. I've seen him before a few times over the past 5 years (all pre Sjs diagnosis, he was actually the one who had me go to a rheum to begin with, which is why I admire him) so he knows this has been bothering me for a while. The jaw pain, sometimes it's less annoying and I don't complain about it but it's been there for a good 4 months this time. So anyways, he is checking the gland out with some tests, but mentioned something called Eagle's Syndrome, where a ligament in your neck becomes calcified, and he said it's more common in people with rheumatological problems. This is tested with, I think, xrays done at a special angle.
There is surgical treatment for it. I probably do not have it it, but thought I would share this name with you guys in case you are experiencing these kinds of problems and not getting anywhere. I think it might be one of those things that a lot of Dr's don't know about.