ANA Discussion Forum

General Category => NF2 => Topic started by: DontLookBack on September 21, 2008, 06:03:39 pm

Title: Newly diagnosed with NF2 and have questions
Post by: DontLookBack on September 21, 2008, 06:03:39 pm
I have been a part of the Meningioma Mommas but there are only a few on there with this. I had surgery on 8/25/08 and my NS removed 4. He was unable to remove the M in my Saginal sinus and the four acoustic neromas I have. Now, I've been dealing with tinitus and that wasn't so bad. Now I'm experiencing blank spots of hearing loss. They don't happen all of the time just every once in a while and it only lasts for a second or two. Have any of you experienced this? Just curious because I just went through surgery and I know my NS is talking about Gamma Knife but down the road a bit. I'm already looking at a year to recover from the first surgery. Thanks for listening.
 ???
Title: Re: Newly diagnosed with NF2 and have questions
Post by: Kaybo on September 21, 2008, 06:19:37 pm
Hi Don't Look Back~
I can't really answer any of your questions - a lotta help I am, huh?  But I just wanted to Welcome you to our little corner of the world!  We have a lot of fun here, try to answer questions, and are VERY supportive & caring - hope THAT can help you!!

K   ;D
Title: Re: Newly diagnosed with NF2 and have questions
Post by: leapyrtwins on September 21, 2008, 09:12:20 pm
Kelly -

just wanted to say hi and welcome  ;D

Jan
Title: Re: Newly diagnosed with NF2 and have questions
Post by: tony on September 22, 2008, 12:59:17 am
Sorry to hear of your troubles
Hard to call the exact cause of symptions
but understand that any local swelling or bruising
will cause a nerve to mis-fire (is a blood flow thing ?)
that applies to both hearing and balance
so careful with ladders and stairs for a whlie ?
Gamma maybe an option - it depends a bit
how big and where exactly the tumour is
Given the NF2 position - best to deal with docs
who have experiance with the condition
Best Regards
Tony
Title: Re: Newly diagnosed with NF2 and have questions
Post by: ppearl214 on September 22, 2008, 05:48:15 am
Hi Kelly and welcome.  I'm sorry to hear you've been having such a rough go of things, but hoping Tony and all can help provide answers that you seek. Glad to have you here..... and again, welcome.

Phyl