General Category > NF2

What do I do now?

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oh, now what:
Since surgery I am "possible NF." I am 65 yrs old with an AN on one side, so far, and a history of benign tumors, most upsetting are in my eye. Thoughts of losing hearing and sight are tough. I guess I'll wait  until I get through an annual MRI in April to try to make a decision on hearing rehab. My sight now is good, but I want to do better in the hearing dept. The webinar today was helpful. Just a lot, I was assured previously because of my age I was not NF. Maybe mosaic? I guess we're all deficient in tumor supressor hormone (merlin?). I hope somebody figures out how to prevent and cure all kinds of problems with these buggers, and with cancers.

Willbur:
What did the doc say? I couldn't imagine being deaf and blind. Have you spoken to someone who specializes in NF2??

oh, now what:
I haven't started looking for an NF specialist. Doctors said I wasn't NF beccause of my age. On my last ophthalmologist report I read ""possible NF."  I called the office and was given to a tech who said the note was from another doctor. I'm still soaking this in, though not totally surprised after reading of other experiences and histories and the varieties of NF. Don't know how much anyone could tell me or predict. Thanks for reading my post.

Willbur:
Even if it's mutated it would be hard to tell.

Susan A:
I think it would be to your benefit to see an NF2 specialist. Unfortunately, there aren't that many of them, so it depends on where you live whether you have one nearby. I have heard of people being diagnosed with NF2 in their 60s, so age is not important here.
Where were your other benign tumors (other than your eye)?

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