Hello Everyone - As you can see from my sig, I became a 5 yr survivor this spring. I have always had a little pain and some Trismus in the jaw muscles during chewing, esp on the left side where the tumor was. I have been seeing a dentist every 4 months since my treatments ended. So far I haven't had any major dental issues, but about every other checkup I need a small filling or two. I have been using fluoride trays for at least four years and I do everything I can to help reduce demineralization. Anyway, three days ago I started experiencing a more than the usual, extremely tired and aching jaw on the left side when chewing... almost right at the joint. When I'm not chewing, my left side just feels different somehow. Not really painful but sort of stiff and "fuzzy", and the inside of my cheek and gum at my lower back molar feels slightly sore. In fact, the whole left side of my head feels fuzzy. Can anyone out there tell me if you have had this issue? If so, what was causing it? I'm concerned about ORN and was wondering if this could be a warning symptom. Although everything I've read says there are usually no symptoms for ORN. I live in an area that is big for allergies and I do suffer from nasal allergies, so I don't know if this is sinus/allergy related or something more serious. My dentist said that you can't tell if someone has ORN just from x-rays. So then, how do you find out if you have it??? Are there any survivors out there with ORN? If so, will you please share your experiences? Also, are there any long time survivors out there that have had these kinds of pains but never experienced ORN? I'm also wondering if these symptoms might have anything to do with my brain. Not intellectually, but physically. This leads to my other concern... that the cancer could come back somewhere else. My Doc said that sometimes oral cancer can spread upwards. It's strange how, now that I've reached the milestone of 5 yrs out, I'm more freaked at the slightest little change in my "new normal". Obviously, if this continues for much longer I will see my Doc! Thanks in advance for sharing!!

It would no doubt put your mind to rest if you went and got it checked out now. Sounds to me like it could be a continued hardening of the flap tissues - I have that - but I'm not sure about this "fuzziness" you describe. Is that possibly an ear canal issue?

Whichever it turns out to be - make an appointment and go now to get it checked out. I do not fool around with things like this because I know I will not rest easily until it has been investigated. Your doctors will totally understand your concerns and will applaud your continued monitoring and vigilence.

Donna

You are right, Donna. I think I will call my Doc's office tomorrow for an appointment! By the way, what is the flap tissue? Thanks for the reply!

When they reconstructed my tongue they used imported tissue to rebuild the tongue so that the tongue is almost "tethered" to one side of my jaw. This imported tissue is what I call the 'flap' tissue.

Keep us posted with how the appointment goes.

Hugs Donna

I think I would skip your front line dentist and either go to an ENT or perhaps a Oral Surgeon. Perhaps your dentist could suggest.