Thanks TW,phyl,Mark. Did you guys had any balance and facial issues before or after treatment? If you had these symtoms, did it improve after treatment? Did you have new symtoms like balance issue after treatment? If it is how long you have had this?
I had severe vertigo, disequilibrium (imbalance and "wonky head") and oscillopsia, and sudden hearing loss and tinnitus, at the onset of my symptoms. My vertigo and oscillopsia fairly quickly abated and disappeared (within a couple months). I was misdiagnosed for 7.5 years, during which time my disequilibrium and hearing worsened progressively and I became more fatigued. I did not have (and have not since had) any facial symptoms.
Immediately after CK treatment, the loudness of my tinnitus dropped 90% and has since stayed that subdued; this is a very unusual (and welcome!) result. My balance became about 15 to 20% worse, subjectively, for about 6 months, after which time it steadily began to improve. (According to Dr. Chang, about 25% of CK patients report improvement in their balance over time compared to their function at the time of treatment.) Now 41 months post-treatment, my balance is about 80% recovered and my energy level has pretty much completely recovered. My hearing is roughly 20 to 25 dB worse in my midrange frequencies compared to at the time of treatment but has stabilized in the past year (no further loss); I still have useful hearing in my ear on the AN side.
One thing to keep in mind: Any symptoms you have at the time of treatment may temporarily get worse (possibly for several months to over a year). But it is highly unlikely that symptoms you
don't have at the time of treatment will arise after treatment. This according to Dr. Chang.
Davecz: As you know, your tumor size is right on the cusp of being too big for radiation treatment. Radiation often causes the tumor to swell for a few months, and swelling of a tumor already at 3 cm size (pre-treatment) would cause pressure on the brain stem. Also, the brain stem is more likely to receive collateral damage from irradiating a 3cm tumor that is already indenting it. Those are the main reasons I know of that make radiotherapy practitioners leery of treating tumors over 3 cm in size. But if I remember correctly, Staten Island Hospital often treats ANs larger than 3 cm with radiation, so you might ask them for a consultation if you'd like to consider that. And I wouldn't rule out UPMC and Stanford before they review your case. Whether or not to treat a 3cm tumor is determined on a case-by-case basis by each consulting physician; there is no universal cut-off.
Best wishes,
TW
