blamdin

Oh man that is horrible. I'm sorry to hear that. So , there really are no "good" options for dealing with it.

That is why I am thinking of trying radiotherapy (still has a risk of hearing loss) , my mother has NF2 and has had 4 surgeries. She has significant hearing loss in both ears. She also has a lot of balance issues which made it so she couldn't work anymore. I know if though if I do nothing at all that eventually I will lose my hearing and probably much worse things will happen as well.

I have type 2 and have yet to have any surgery. I know it isn't to far off in the future for me. I know every case is different, but do you regret having any of the surgeries that you have had? I am really on the fence about surgery vs radiation treatments, or avastin. Thanks for sharing your story and making me realize just how many people are going through the same thing as me.

Yeah I would have too! Yeah they told me that radiotherapy is only an option up until the tumors reach a certain size. I think I will have to make a decision to have something done within the next year or two.