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My name is Ellen the e at the end is the first letter of my last name. I was diagnosed with the bilateral shwannomas (acoustic neuromas) at age 55. They were in the 6 to 7 mm range, if I remember correctly.I received the NF2 diagnosis at Mayo where I am being seen for the shwannomas at the same time. I am 57 now. I had full spine MRI and have no other tumors at this time. I have balance and disequilibrium issues. I also have oscillopsia, which drives me crazy. I had vestibular therapy for three months and did the exercises faithfully with not even the slightest improvement in balance, disequilibrium or the oscillopsia. I had Gamma Knife Radio surgery last April. There hasn't been any growth since then. The other symptoms have not gotten worse, with the exception of the hearing. My next MRI is in a year.
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@ellene Hi again. At your mention of oscillopsia, I read up on it and learned that there are different manifestations of it, including frequency and severity so your brief mention of it and understandably "driving you crazy" doesn't give an idea of how dominant in your life it is i.e. frequency? The doctor you mention, is a neurologist, neurosurgeon? Do you know how many NF2 people s/he has seen? (I consider that an important question in terms of ability to advise you re the future.) Your age at diagnosis I believe is encouraging since my impression is that it is the people who are hit with it in their 20's (or earlier) whose problems are greater. May your hearing stay where it's at for a considerable time!