ANA Discussion Forum
General Category => NF2 => Topic started by: Nank on June 23, 2013, 05:42:38 am
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Just found out I have an AN.
I have another schwannoma in my T2 region that I have been watching and waiting for 7 years.
I had the bloodwork the other day (which they said would cost $3000). I hope it will be covered.
My question is, why find out for sure? Will anything change? Will I just keep having to get MRIs for the rest of my life and find more? Not sure why I want to know.
Thanks for any advice!
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Hello;
Well, I guess technically, you do fit the criteria fo an NF-2 Dx. I have read different reports which state a person with your situation will eventually develop a contralateral AN. It can be many years later ( mine was ), or never, I suppose. Your age may be a factor. Late 40s brings less tumor aggression in some.
It might be good to know the blood test result for the sake of curiosity. If NF-2, one is more prone to schwannomas, ependyomas and meningiomas.
Yes, if NF-2, usually brings some years ( each year ) of head and spinal MRIs, and, if no growth, some Drs. may move the MRI scans to 5 year intervals.
Medicare will no longer pay for neck/cervical spine MRIs unless the tumors have proven active.
I'm unsure your age.
Best wishes, Nank. Do they wish to treat the AN?
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Nank,
For me, it was single sided AN with multiple meningiomas that made them suspect NF2.
My reason for wanting to know was not for myself, but because of my children and grandchildren.
Since I have NF2, they now are aware to investigate any early symptoms and not ignore them. It's very odd that I do not have any cafe au lait spots, nor do my children, but 2 of my children have babies with identical cafe au lait spots, so they will be watched more carefully.
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Hi;
I think only about 1/2 of NF-2ers get the skin spots. I have none. "Identical cafe au lait spots" is interesting!