Re: New Member <Adonai10@...> Diane

[Guest guest]

Hi Diane, my name is Donna.

I have a 13 year-old boy that has NF2. I also have this disease. My son is

blind in one eye and can only see 20-100 in the other. He had surgery when

he was 5 years old to remove a tumor the size of a grapefruit from his right

optic nerve. Last summer, he had surgery to remove the scar tissue in his

" good " eye. It had attached to the retina and pulled it away from the eye

wall until he was nearly blind. He saw 20-60 before the surgery and can only

see 20-100 now, but we are so thankful for that improvement!

My son's name is and his e-mail address is if your

son would like to talk to him. We live in East Texas by the way.

Welcome to the Crew!

Donna

[Guest guest]

aint it the truth

kevin in texas

Re: New Member Diane

>From: DonnaHut@...

>

>Hi Diane, my name is Donna.

>

>I have a 13 year-old boy that has NF2. I also have this disease. My son

is

>blind in one eye and can only see 20-100 in the other. He had surgery when

>he was 5 years old to remove a tumor the size of a grapefruit from his

right

>optic nerve. Last summer, he had surgery to remove the scar tissue in his

> " good " eye. It had attached to the retina and pulled it away from the eye

>wall until he was nearly blind. He saw 20-60 before the surgery and can

only

>see 20-100 now, but we are so thankful for that improvement!

>

>My son's name is and his e-mail address is if your

>son would like to talk to him. We live in East Texas by the way.

>

>Welcome to the Crew!

>Donna

>

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[Guest guest]

Hi Donna,

Thanks for the welcome. It is a comfort knowing that you can come

here to this site and ask questions and receive answers. I thought I knew a

lot until I started reading the different posts. It seem this disease is

different in everyone. I have so many questions. At the moment, we are

preparing ourselves for surgery in LA to remove one of the acoustic tumors.

Does your son or you have hearing problems?

My sons ' hearing at the present time is fine. That's why we want to have the

surgery now. I believe the tumors are under 1 cm. How has this disease

affected you personally? We, my husband and three other children have not had

any test to see if we have it as yet. I can only deal with so much. We are

trying to get him into the school for the blind here in Tenn. The red tape is

incredible. I keep going to meetings and vision tests and paper filing. Then

there is the insurance problem, which is pending. We sit here and wait to see

if they will pay for the surgery to be done out of state. Please write back

when you get a chance .

Sincerely, Diane