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[Guest guest]

Hi , Its been awhile. You are welcome to join us in Edmonton. I have been

in contact with ANAC, in fact I represent Sask now and have taken part in a few

xconference calls with the Western Chapters and pres. In AB there are Friesen's

and . In Sask me and the Regina family that is very NF1, but mother has no

symptoms. Her son had some tumors taken out in the accoustic nerve area. She

says he has NF2. A Calgary ENT says he has Nf3. Dr. Oldring did most of his

surgeries and says he does not have NF2. He does have NF1 symptoms. All the

tumors were on the same side, 6 in the same area. No tumors are on the other

side. I think a male in Saskatoon has NF2. He had a tumor taken out on one side

in Montreal more than 20 years ago, has an AN on the other side, some tumors in

his head and spine. Following his 1st surgery he has facial weakness. He is

waiting for results from a genetic test done months ago and sent east. There is

always the possibility there are some that haven't contacted ANAC, but they must

have gone to specialists in Sask or AB right. Not meaning to be insensitive but

our facial weakness gives us away in people in our age bracket. Of course they

could be unilateral. There are only 16 with ANAC from Sask. I doubt I'll see

even a fraction with NF2 in the numbers given. I am constantly put on show for

Doctor of the Neurosurgery staff. They have never seen this before. I say our

battles would be alot easier if there were more of us. Also, how is one a

specialist that knows about this disease if they have seen only maybe 5 -10

patients at most in their lifetime??? Money is a big factor the last few years.

there are a few doctors I was going to ask you about from Sunnybrook and

Toronto General. Who is the NF2 specialist in Ontario. Nettie Friesen and I

would like to know. We would also like the name of the NF2 specialist in

Vancouver General Hospital as well. Anyone know?? I was given the one in BC a

while back, but its buried because of renovations and we don't know where to

begin to start looking. Please Help!

TYTYL, Sheryn in SK

[Guest guest]

Hi Sheryn,

Would love to join you guys up there but it's not possible at this time. I

used to have a listing of all the NF2 members in the ANAC and there were

about 30. That is only a small fraction of all the NF2 people in the country.

In any case, I think the doctor you are referring to at Sunnybrook is Dr.

Nedzelski. He is a great guy and removed my right-side AN in '86. Dr. Tator

is my current doctor and is the NF2 specialist at Toronto General. He too is

a great guy. I don't think Dr. Tator actually does operations any more but I

see him once a year to review my MRI. If you want an NF2 specialist in

Ontario, I think it would have to be either Dr. Nedzelski or Dr. Tator. Both

were on the ANAC medical advisory board for many years. I'm a long way from

BC. Someone gave me a name of a good doctor in BC but I forgot his name.

Hope this helps!!

>Hi , Its been awhile. You are welcome to join us in Edmonton. I have

been in contact with ANAC, in fact I represent Sask now and have taken part

in a few xconference calls with the Western Chapters and pres. In AB there

are Friesen's and . In Sask me and the Regina family that is very NF1,

but mother has no symptoms. Her son had some tumors taken out in the

accoustic nerve area. She says he has NF2. A Calgary ENT says he has Nf3.

Dr. Oldring did most of his surgeries and says he does not have NF2. He does

have NF1 symptoms. All the tumors were on the same side, 6 in the same area.

No tumors are on the other side. I think a male in Saskatoon has NF2. He had

a tumor taken out on one side in Montreal more than 20 years ago, has an AN

on the other side, some tumors in his head and spine. Following his 1st

surgery he has facial weakness. He is waiting for results from a genetic

test done months ago and sent east. There is always the possibility there

are some that haven't contacted ANAC, but they must have gone to specialists

in Sask or AB right. Not meaning to be insensitive but our facial weakness

gives us away in people in our age bracket. Of course they could be

unilateral. There are only 16 with ANAC from Sask. I doubt I'll see even a

fraction with NF2 in the numbers given. I am constantly put on show for

Doctor of the Neurosurgery staff. They have never seen this before. I say

our battles would be alot easier if there were more of us. Also, how is one

a specialist that knows about this disease if they have seen only maybe 5

-10 patients at most in their lifetime??? Money is a big factor the last

few years. there are a few doctors I was going to ask you about from

Sunnybrook and Toronto General. Who is the NF2 specialist in Ontario. Nettie

Friesen and I would like to know. We would also like the name of the NF2

specialist in Vancouver General Hospital as well. Anyone know?? I was given

the one in BC a while back, but its buried because of renovations and we

don't know where to begin to start looking. Please Help!

>

>TYTYL, Sheryn in SK