re vestibular nerve

[Guest guest]

i'm coming in late on this discussion but ....

I had my first AN surgery in '83 and it was so large that it was pushing my

brainstem - so they removed every bit of the tumor - including hearing and

balance nerves. with the facial nerve, they cut out the section that had the

AN and then reconnected the facial nerve so that it could regenerate. it

took years but really has " learned " to move my face. that particular tumor

has never come back!!!

my 2nd AN was in '92 - had it zapped w/gamma-knife and had C.I. implanted in

'93. that tumor has not regrown either. unfortunately i still

have a dozen other meningioma tumors in my head but they are sleeping for now

........ SHHHHH do not wake them.

(my very first surgery was in my spine in '79. and it wasn't til then that i

knew about tumors in my head. at that time they hadn't named it NF yet. )

all that to say complete removal or zapping seems to have worked for me to

not have return of specific tumor. BUT - it is my understanding that it is

the nature of NF2 to have tumors develope on internal nervous system. tumors

do not limit themselves to our ears.

BTW my balance is zip. sometimes i have trouble balancing in my wheelchair

-ha.

LynnBK

you wrote:

Date: Wed, 21 Feb 2001 10:57:15 -0500

Subject: Re: vestibular nerve

>

I had my first AN removed in 1979. I had hearing in that ear prior to the

surgery, however with the removal of the tumor, I lost the hearing. So, I'm

sure that the vestibular never was cut and perhaps sections of it removed

when the tumor was excised. Then in 1985, the surgery was repeated to remove

regrowth. However, once again tumor has regrown, but doctors feel that it

should remain and not be removed third time unless it's causing a problem

elsewhere. That is one reason why, when 6 years ago, when a new AN grew in

on the other side nothing was done, in part bc the tumor had grown into the

cochlea, but also because of the strong possibility that there could be

regrowth on that side, if the tumor were to be removed. Also, like Jon, my

balance is very good. I'm still able to enjoy the outdoor activites that I

like to do.

Greg

>>

>> Question:

>>

>> Has anybody experienced regrowth of AN's after having vestibular nerve

>> removed as well as AN?

>>

>> Question:

>>

>> How far back does this approach go, in other words, who was the first

> person

>> to have vestibular nerve removed as well? Perhaps a it was in UK,

>> because I recall Gareth being an early advocate.

>>

>> If this approach is more than a few years old, and there has been no

>> regrowth worldwide, it is a strong recommendation, and a great leap

> forward

>> in permanently dealing with AN's.

>> Rosemary

>>