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@ellene

I have bilateral vestibular Schwannomas with neurofibromatosis type 2 (NF2). I was diagnosed with the schwannomas in February and NF2 this summer. The "dizziness" is affecting my quality of life now. The hearing loss to a lesser degree. For the most part this doesn't get me down, but I do have days when it gets to me. At this point we are watching the tumors, with the hope that I won't need surgery. I wonder though, at what point down the road will the risks of surgical intervention outweigh living with the symptoms that are causing my quality of life to deteriorate. It seems there are no easy answers. I am just hoping that I will, with the help of my doctors, know when to do what.

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Replies to "I have bilateral vestibular Schwannomas with neurofibromatosis type 2 (NF2). I was diagnosed with the schwannomas..."

I have spent too much time doing the wait and see, can't leave the house because the dizziness is so bad, no more driving, muffled hearing, gaps in memory,etc all garbled up with migraines/vertigo. I feel like a circus show because the docs have only read about this and never have seen a patient. I think I am going to try to get to a Mayo clinic and see what they have to say.