Re: facial paralysis and repairing the damage????

July 23, 1999

Hi all,

I would like some input if possible on this sensitive topic. I was recently

told by Dr. Brackman via telephone to " leave my daughter as unoperated

acoustic neuroma alone for the chances of preserving her hearing are slim at

this point. This is very upsetting for she is only 11 and her acoustic is

2.3cm already. But this is what baffled me more. I told Dr. Brackamn that

although i am trying to conditon myself that my daughter will lose her

hearing at some point that my next " major " issue is her facial nerve. He

told me that thats repairable! Is it? I havent gotten to exdplore this issue

so im turning to those who have been there already. Im grateful for honesty

from the crew. Real upset here in ny from

P.S. if it is repairable has anyone done so??

July 23, 1999

It's only repairable to a certain extent. They can do graphs and some

other things, but I think you have a reason to be concerned. It never looks

completely normal as far as I know. These graphs can help the person look

better and have function or bad side effects relived, but no it's never the

same. MANY DR's don't take us seriously when we say that we don't want the

facail nerve messed with. In my case I've had DR's tell me that I'm " full of

hot air " for saying I'd rather leave some tumor rather than mess up my face

(not DR Brackmann.) BUT oh well I had a 3 cm AN just removed and DR's

reassured me that since it was small that my face probably wouldn't be messed

up. WRONG. I have what they call temporary facial paralysis. The nerve was

stretched not cut. I think they best advise I can give (and Brackmann

is my DR too) is to get a 2nd, 3rd and 4th opinion. I know there's some good

DR's in NY so maybe someone can help you there.

Good luck to you and your daughter. I hope you guys can find someone

to help you in a way that you feel 100% comfortable.

Hugs,

in AZ

July 23, 1999

MARIA,

I KNOW YOU ARE REAL HESITANT ABOUT RADIATION, BUT I HAD GAMMA KNIFE DONE ON

MY LEFT AN'S BACK IN 1990, AND IT DID NOT BOTHER MY FACIAL NERVE WHATSOEVER.

THIS ALSO WOULD BE A CONCENTRATED DOSE OF RADIATION, IT WOULD NOT EFFECT ANY

OTHER PART OF HER BODY.

WHEN I HAD TUMOR REMOVAL ON MY RIGHT AN, THE RIGHT SIDE OF MY FACE WAS

COMPLETELY PARALYZED AT FIRST. GRADUALLY MY NERVES HAVE COME BACK. I STILL

SMILE A LITTLE CROOKED, BUT IT IS SSSOOOO MUCH BETTER!

HOPE I HELPED A LITTLE.

DONNAHUT

July 23, 1999

Woo Hooo!!! Right On!!!! Don't take one Dr's. word as is. Talk to many many

doctors and see what they say. Not one " specialist " in NF2 like Brackmann,

but other specialist in NF2 as well. Being in NY I know there's a ton of

them.

Maybe Tevyen or any other NY'er Crew member know a couple they could refer

you to?

Good Luck.

Mark

----Original Message Follows----

From: Misha64@...

I think they best advise I can give (and Brackmann

is my DR too) is to get a 2nd, 3rd and 4th opinion.

July 23, 1999

I had the same thing with my left and right AN, although I chose Fractured

Stereotatic Radiation (FSR) or NOMOS for my left. And I must say, they were

able to save my facial nerve, but since the size of the tumors were well

over 3.5-4cms they weren't able to save my hearing.

Considering your daughter's tumor size and ability to hear FSR/Gamma Knife

maybe an option. But again, like Marie says, get a lot of opinions of other

doctors.

Good Luck...

Mark