Author Topic: Why find out?  (Read 3707 times)

Nank

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Why find out?
« on: June 23, 2013, 05:42:38 am »
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!
1.3x0.7 cm AN in right ear
Diagnosed 6/12/13
Tinnitus, ear pain
No hearing loss
GK 7/25/13

nftwoed

  • Guest
Re: Why find out?
« Reply #1 on: June 24, 2013, 05:47:34 pm »
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?

Nannybee

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  • Posts: 98
Re: Why find out?
« Reply #2 on: July 23, 2013, 10:13:05 pm »
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.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

nftwoed

  • Guest
Re: Why find out?
« Reply #3 on: July 28, 2013, 12:26:29 pm »
Hi;
   I think only about 1/2 of NF-2ers get the skin spots. I have none. "Identical cafe au lait spots" is interesting!

 


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