While I am not new to this board, I am a newly diagnosed NF2. Currently SSD due to a right AN (post-op), with a 2mm tumor just found on the left.
I'm hoping for some advice. I currently have good hearing in my left ear. normal, functional hearing. So here are some questions, for the moment:
What are the stats like for radiation treatment in NF2 patients? I know this is generally a favorable hearing preservation method, especially for a tumor this small, but am also aware of skepticism surrounding the malignancy issue with NF2 specific tumors.
Has anyone had experience preserving hearing of any sort with NF2 or treatment, ABI aside?
Right now I am in no rush to make any decisions, but it's never too early to collect info! I would like to try to figure out if I want to treat the tumor while it is very small (to hopefully decrease the potential damage done to hearing through treament), or keep my hearing "as is" for as long as possible by waiting it out for a while (possibly risking a greater chance of hearing damage through treatment). I know treatment only gets more difficult as the tumor gets bigger, but also know that the likelihood of some damage to hearing through any kind of treatment is high, no matter what the size of the tumor. Thoughts/advice/expereinces?