I've been waiting and watching for almost nine years. I go to a neurologist every year and have an MRI yearly. From 11/2001 to 12/2009, I've had 5 mm of growth but in the past few months I felt symptoms have increased. My tumor is on the 9th cranial nerve as opposed to the acoustic (8th cranial nerve). If I didn't know it was there, I would think nothing of these symptoms - some of which include the "wonky" feeling, pressure in my head (sometimes upon changing position), tinnitus on that side, clicking noise in my ear, and occasional jaw and ear pain. The symptoms of a 9th nerve tumor aren't showing up - swallowing and gag reflex problems.
Recently while up north for the summer, I decided to consult with a specialist in Boston for brain stem tumors. He was great - took the time and was very knowledgeable. He felt by looking at my last MRI and examining me that the symptoms could be due to the tumor or jaw or TMJ, but if they were not disabling to me, he would still recommend wait and watch. It is just about touching the brain stem but no swelling or pressure around it.
So I will continue until next MRI (12/2010) and hope the measurements are still the same. Meanwhile I've seen a dentist who couldn't definitely diagnosis bite or TMJ problems but did recommend a $400. night/bite guard!! Think I'll check out the over-the-counter ones you can mold yourself.
Sheryl
P.S. to Derek - I'm still in the running!!
