Any hope for NF2 who lost hearing on both ears? I had surgeries but as per surgeon, the nerve connection from middle ear to cochlea (inner) is intact.

Thank you for the feedback Don and Dan.  I have read your history Don and many others. Many folks on this board, which is a wonderful resource by the way, who have shared stories where they decided to watch and wait.  Some have monitored for a long time and still have serviceable hearing (like me).  Other waited and lost their hearing before treatment.  On the other hand many have opted for treatment while they had serviceable hearing and lost it after Gamma knife.  There are no guarantees.

I did a lot of research about 10 1/2 years ago when I was diagnosed.  At the time, I consulted a number of specialists and decided until there was some growth I would do nothing.  I have paid attention to the research and 'lurked' in this site and the forums for a long time. I have decided that I am going to have Gamma Knife.  My tumor is still small but grew significantly in the past year.  I have excellent hearing now but having more tinnitus in my AN ear and some minor balance issues in recent months.

As you both said it's a personal decision and I am comfortable with my decision.  Taking a realist approach, I have about a 95% chance of tumor control if I have Gamma Knife and likely a bit better than 50% chance of retaining serviceable hearing with or without GK.  There are currently good margins to make sure my cochlea gets <4GY of radiation.  Some studies indicate a better outcome with cochlea getting a low dose.  Like most things, nothing is certain but it makes me feel better knowing I can be proactive as my AN has grown closer to my cochlea this year.  Lastly, I'm expecting my hearing to decline and that I will end up SSD eventually.  If I'm wrong that's great.  If I'm right, I'll still be sad but as I have read there are things which can be done to help cope.  I've made my decision and at peace with it.  I am fortunate to have the support of my friends and family and as I mentioned before this forum has been a great asset as well.  Thank you!

Amy,

Sorry you are here but the support you get from this group in great.  I had an VS and chose radiation last fall.  I spent time looking at options.  If you send me your email to my email Dan4att@gmail.com I will send you my work.  It may help you move more quickly through the decision journey.

Dan

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