I was diagnosed with NF2 when bilateral acoustic tumors were discovered. At that time (5 years ago, age 36), I found out that I inherited this from my father, who had bilateral ANs and is deaf. His doctors never even mentioned NF2 to him. Upon my diagnosis, all of my siblings were screened via MRI and my brother was consequently diagnosed.
While I am certainly not an expert, I will share what I have learned. NF2 patients can differ significantly in the severity that they are affected. I know some who were affected in there early teens and were deaf by their earl twenties. I am 41 and still have good hearing in one ear. Some have numerous tumors in their head and spine while others have only bilateral ANs. My family seems to have a pattern of relatively late onset. My father's first AN was discovered when he was 29 and my brother and I were in our 30s. My father and brother have only bilateral ANs, but I have numerous spinal tumors in addition to my ANs.
NF2 patients have many choices to make regarding treatment. In addition to choices for AN treatment, they may have to make choices regarding treatment of spinal tumors, which can indeed cause significant deficits deficits.
I'll end by suggesting that you read this excerpt from Neurotology
. It gives an excellent overview of NF2. http://www.advocurenf2.org/01_understandingnf2.html
Please feel free to contact me if I can answer any other questions. I am sorry that you have to even consider this.