Re: My an surgery question

[Guest guest]

:

Nope, cross your fingers, have not been diagnosed with a third AN.

Once again, I had a second AN removal in the same spot on the right side and

there is no facial paralysis. That was done by Dr. Cerullo both times but the

boob forever hurt my leg (nothing to do with NF II). Gee, I hope if I

encounter spinal tumors they don't tackle my legs.

Keep talking to different doctors ... research - research - research !!!!

Sally

[Guest guest]

Oh, and :

You, Patty and I need to get together. We're all in Illinois. I live in

Wheaton.

Sally

[Guest guest]

Tiffney:

Great, let's set-up a get together!!

Sally

Subj: RE: My an surgery question

Date: 7/2/02 6:08:49 AM Pacific Daylight Time

From: tiffney@... (Tiffney Compton)

Reply-to: NF2_Crew

To: NF2_Crew

Me too, My husband and I live in ville IL. and drive to Witt IL.

everu weekend to visit my mom.

Re: My an surgery question

Oh, and :

You, Patty and I need to get together. We're all in Illinois. I live in

Wheaton.

Sally

[Guest guest]

,

I am from ville, IL. Not too far from Carlinville IL. I have

fortunately not had to have surgery yet but I do have 2 AN's in my left ear.

I am still at the watch and wait stage but who knows for how long. How long

have you known about your NF2?

My an surgery question

Pattycakes -

Thanks for sharing your experience. I'm in central IL kinda

between St. Louis, MO and Springfield, IL. I live in Carlinville. I

have seen Dr. Weit's name before. Happy you had a good experience

with him.

Sally -

The reason two n.s. thus far had told me I would lose my facial

nerve is because this would be my second (2nd) a.n. removal at this

surgery site. They both said there would be scar tissue etc. Still

not sure if I will be having the surgery yet or not. I'm to have

another Brain MRI next week. Surgical decision will be made pending

findings of this MRI. If I have the surgery, I would love NOT to

lose my facial nerve. Ah well, we can only wait and see. ()

Thanks Patty, Sally, and anyome else who shares their

opinoin/experience with me. No one has answered my original question

yet so I'll ask it again :

Has anyone been disgnosed with a third (3rd) acoustic neuroma ???

Thanks. God bless all of you.

K.

[Guest guest]

Me too, My husband and I live in ville IL. and drive to Witt IL.

everu weekend to visit my mom.

Re: My an surgery question

Oh, and :

You, Patty and I need to get together. We're all in Illinois. I live in

Wheaton.

Sally

[Guest guest]

Tell me when and where I'll be there. Oh and i do not have another

an but on the side not operated yet, I have an AN (8th nerve) and

also a meningioma, near or on the 5th nerve. The doctor says that

it is not a problem for me now. Anyone have this???

> Oh, and :

>

> You, Patty and I need to get together. We're all in Illinois. I

live in

> Wheaton.

>

> Sally

[Guest guest]

> ,

>

> I am from ville, IL. Not too far from Carlinville IL. I

have

> fortunately not had to have surgery yet but I do have 2 AN's in my

left ear.

> I am still at the watch and wait stage but who knows for how

long. How long

> have you known about your NF2?

Hi !

My uncle designed the ville Ceter for the Deaf

building ! He and my aunt live there. They have a wonderful

restaurant which you should try if you haven't already. The name of

the restaurant is " Lonzerotti's.' My uncle has his architectural

office close by. It's MRG Enterprises.

Interesting that you have 2 a.n.s in one ear. Who is your

neurosurgeon ? Dr Lyle Wacaser in Springfield was my n.s. for more

than 20 years but he retired last year. I had to find a new n.s.

I've found a wonderful n.s. ! She has no other NF2 patients but is

very good ! Her name is Dr. MacGregor and she's at the St. 's

Pavillion. NF2 sems to be very much about watch and wait. I'll be in

Springfield on Monday, July 8 for two MRIs at Memorial Hospital.

I was diagnosed in 1977. At that time it was still

called, " VonRecklinghausen's Disease. " The name NF didn't come into

the picture until much later. Soon the differentiation between NF1

and NF2 came. Research made GIANT strides in the 1980s and continues

to do so.

Happy to know someone so close to home. You're more than

welcome to come visit me anytime ! Just let me know and I'll e-mail

directions to our house. My hubby, sons, and I all love to meet new

people ! God bless you !

K.

>

>

> My an surgery question

>

>

> Pattycakes -

> Thanks for sharing your experience. I'm in central IL kinda

> between St. Louis, MO and Springfield, IL. I live in Carlinville. I

> have seen Dr. Weit's name before. Happy you had a good experience

> with him.

>

> Sally -

> The reason two n.s. thus far had told me I would lose my facial

> nerve is because this would be my second (2nd) a.n. removal at this

> surgery site. They both said there would be scar tissue etc. Still

> not sure if I will be having the surgery yet or not. I'm to have

> another Brain MRI next week. Surgical decision will be made pending

> findings of this MRI. If I have the surgery, I would love NOT to

> lose my facial nerve. Ah well, we can only wait and see. ()

>

> Thanks Patty, Sally, and anyome else who shares their

> opinoin/experience with me. No one has answered my original

question

> yet so I'll ask it again :

> Has anyone been disgnosed with a third (3rd) acoustic neuroma ???

>

> Thanks. God bless all of you.

>

> K.

>

>

>

>

[Guest guest]

I know Lonzerotti's very well. I am not a big eater when it comes to supper

so I have not eaten there yet but that is where everyone goes in

ville for good food. My husband coaches high school football and

basketball at Illinois School for the Deaf and he substitute teaches there.

I

I have never heard of your doctor before. I need a second opinion on one of

my mengenomias. My N.S. wants to do surgery within the next few months. It

is only at the most 2cm big. It is on top of my head almost in the middle

and he does not want it to cross over to the other side. My N.S. is Dr.

Terrence Pencek (sp). He use to be with Doctors Hospital but he is on his

own now. I am looking into DR. Espenocia at Doctors Hospital for a second

opinion.

I would love to meet sometime. I have only known for almost two years about

my NF2. Do you have troubles walking too?

I would love for sometime to meet you and your family. My husband and I,

along with my dog Rocky, drive down to visit our patents every weekend in

Witt. Maybe some Sunday when you have time we can meet..

Tiffney

My an surgery question

>

>

> Pattycakes -

> Thanks for sharing your experience. I'm in central IL kinda

> between St. Louis, MO and Springfield, IL. I live in Carlinville. I

> have seen Dr. Weit's name before. Happy you had a good experience

> with him.

>

> Sally -

> The reason two n.s. thus far had told me I would lose my facial

> nerve is because this would be my second (2nd) a.n. removal at this

> surgery site. They both said there would be scar tissue etc. Still

> not sure if I will be having the surgery yet or not. I'm to have

> another Brain MRI next week. Surgical decision will be made pending

> findings of this MRI. If I have the surgery, I would love NOT to

> lose my facial nerve. Ah well, we can only wait and see. ()

>

> Thanks Patty, Sally, and anyome else who shares their

> opinoin/experience with me. No one has answered my original

question

> yet so I'll ask it again :

> Has anyone been disgnosed with a third (3rd) acoustic neuroma ???

>

> Thanks. God bless all of you.

>

> K.

>

>

>

>

[Guest guest]

> :

>

> Nope, cross your fingers, have not been diagnosed with a third AN.

>

> Once again, I had a second AN removal in the same spot on the

right side and

> there is no facial paralysis. That was done by Dr. Cerullo both

times but the

> boob forever hurt my leg (nothing to do with NF II). Gee, I hope

if I

> encounter spinal tumors they don't tackle my legs.

>

> Keep talking to different doctors ... research - research -

research !!!!

>

> Sally

Thanks, Sally. What an encouragement !!!!!

K.

[Guest guest]

Dear ,

Please forgive me for overlooking your response before. How old

is your son ? I was 20 years old when I had my first a.n. surgically

removed. My n.s. said it could have been growing as long as 7 years.

K.

>

>

> Vannessa, my son Danny has had two an`s removed on one side, and

has another

> one(?)on the other still to be treated.

>

>

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