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Author Topic: update  (Read 3983 times)

hgtvqueen

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update
« on: December 28, 2012, 04:33:37 pm »
I just went back an re-read my post in 2006 after learning my daughter had NF-2.  Everyone referred me to House Ear and that was the best advice ever!  Today, 6 years later, my daughter has successfully had one AN removed and saved hearing and an ABI on the other side after tumor removal.  She will be participating in the clinical trial for Afinitor (RAD001) there in Jan 2013.

I'm so glad I sought other opinions or she might very well be totally deaf today.  Our original Neurosurgeon in Texas told us she would not be a candidate for an ABI because of the magnet involved!  Looking back, his lack of knowledge about NF2 and ABI's is frightening!

Just wanted to say "thank you" to all of you and tell you your advice was excellent!! 
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Jim Scott

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Re: update
« Reply #1 on: December 28, 2012, 05:29:36 pm »
hgtvqueen ~

Thanks for the update!  I'm so happy to learn that our forums have been a blessing for you and your daughter.  I hope things will continue to improve for her. 

Jim

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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.
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