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@ellene, Hi there Ellene. (Is that your name?) I haven't been aware of any others with NF2 on this list but I too, have NF2. One of the first questions that come to mind, is what was your age when you were diagnosed and what is it now (if you don't mind saying). I had no symptoms until I was 57 when I experienced hearing loss and I just turned 82. I am about 100% deaf in the ear where a 3 mm acoustic tumor was removed (at age 57) and now have a C.I. in my other ear and do quite well with that. Do you have other symptoms besides hearing loss? (I have not, except for the fact that only recently my balance has become an issue.) I ask these questions because your answers would supply clues as to what to focus on in preparing for NF2. All best to you!
Replies to "@ellene, Hi there Ellene. (Is that your name?) I haven't been aware of any others with..."
Hi, My husband had a Acoustic Tumor removed in 1991. He was 53 yrs. old. He did lose his hearing in that ear and also has dizziness. He is now 83. The dizziness and hearing loss he is use to but when he blows his nose he gets a shock like feeling in his good ear. Have You experienced this at all? He has had this since right after the surgery in 1991. Thanks!
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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.