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.
missyb
Never heard of that syndrome Missy B ...
Yikes! how many more issues are going to crop up that are SS connected! Give us a break I say..
Good to know tho' that there are some good Med- people out there somewhere who know a thing or two..
Hope you get rid of that jaw ache soon!..
good luck, Dolly x
Hi,
I have had these problems too! I could not swallow without pain and my jaw really hurt. So I went to the doctor when I could not stand it any longer which was after about four months. I got an appointment for ENT University and one week before my appointment all the pain just suddenly stopped. It was really weird. I had a CT which did not show much. So I still don?t know what it was, but the symtoms are very similar to yours.
Let us know how you get on.
stary eyes
Hi, new here :) I had the same issue with jaw pain the other day, went to an ENT, he says I have TMJ, and I guess it can be a problem with us. I have been very newly diagnosed with SS and SLE and hypothyroidism, and psuedotumor cerebri. I am 30 years old. My grandfather and father have SLE, but I seem to be the only one who was lucky enough to get BOTH! lol
Well, it is definitely an interesting disease.....to say the least.
It's something I've never heard of before - but here is a link.
http://www.wrongdiagnosis.com/medical/eagle_s_syndrome.htm (http://www.wrongdiagnosis.com/medical/eagle_s_syndrome.htm)
I found a couple of sites that were more user friendly but they carried ads, so I haven't posted them. There is info out there if you 'google' for it.
Take care - Scottie :)
Thanks for the information...I had never heard of it either!
And to Barb....just want to say Hello and welcome to Sjogrens World. I hope you find the information and support that you are looking for...its all here! If you have any questions...feel free to ask and someone will always try to help out if they can!
Hi, MissyB
I have never heard of this syndrome...but I too have alot of jaw/neck/ear pain and my maxillofacial surgeon has just diagnosed me with TMJ. I also get salivary gland pain along the jaw and sometimes am not sure which pain is down to what :-\
I suppose it just another symptom to add to the ever growing list for SjS ::)
Take Care
Paula ;D