Re: ANA Membership?

January 14, 2002

Its a very professional group compared to ALDA. I attended a conference in '92

(marie drew was there too, 1st time I met her. she tried to talk me out of

surgery while we were cruising around San Diego Bay drinking margaritas, I was

anyhow, lol. I love you Marie!)

They have tons of info on AN's. It gave me a great start in finding info on

nf2, it also reassured me that I wasnt crazy when all these symptoms popped up.

However they are 99% people with unilateral AN's, different in many ways but I

tell you, the people i met there had as bad as balance as any of us bilaterals!

> No and Nope...never heard of them Jeff.

> Carolann

>

> Jeff Daharsh wrote:

>

> > On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc.

> >

>

January 14, 2002

lol. It the exact same here!!!!! the 2 ANA meetings I attended there were only

like 4 NF2ers there with 300 unilateral AN people. They were terrified to talk

to us and we sat separated from them. It was like wehad some contagious

disease. iT BOILED DOWN TO THEY WERE SCARED THEY MIGHT HAVE NF2 TOO, CANT BLAME

THEM A BIT FOR BEING SCARED!

> I was once a member here in OZ. I just wish all I had was an AN. Sounds

lik> e a picnic compared to NF2.

> By the way I always wondered why the ANA people looked so sad when I told

t> hem I had NF2.

> M

> ANA Membership?

>

> On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc.

I> did not receive a response at all. Which to me seems strange considering

t> hat " we " as a group of NF2ers probably deal more with acoustic neuromas

the> n any other symptom of NF2, including the spine. (Just my personal

observat> ion based on email viewed.) We all have ANs, or our loved ones do. So

I

ask> again, " Does anyone belong to the ANA? " If so, do you receive the ANA

new> sletter? "

> Thank you,

> JD in AZ

>

January 14, 2002

I did years ago, 1990 thru 92, i never renewed. they had some helpful info

info when i was new at this but its quite lame now, i know all there is

to know! :-)

Jeff Daharsh wrote:

On

Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I

did not receive a response at all. Which to me seems strange considering

that "we" as a group of NF2ers probably deal more with acoustic neuromas

then any other symptom of NF2, including the spine. (Just my personal observation

based on email viewed.) We all have ANs, or our loved ones do. So I ask

again, "Does anyone belong to the ANA?" If so, do you receive the ANA

newsletter?"Thank

you,JD

in AZ

January 14, 2002

No and Nope...never heard of them Jeff.

Carolann

Jeff Daharsh wrote:

On Jan 8,

I asked if anyone was a member of the Acoustic Neuroma Assoc.

January 14, 2002

I was once a member here in OZ. I just wish all I had was an AN. Sounds like a picnic compared to NF2.

By the way I always wondered why the ANA people looked so sad when I told them I had NF2.

M

ANA Membership?

On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I did not receive a response at all. Which to me seems strange considering that "we" as a group of NF2ers probably deal more with acoustic neuromas then any other symptom of NF2, including the spine. (Just my personal observation based on email viewed.) We all have ANs, or our loved ones do. So I ask again, "Does anyone belong to the ANA?" If so, do you receive the ANA newsletter?"

Thank you,

JD in AZ

January 14, 2002

and the difference would be?

> My understanding is that we (NF2ers) really have Vestibular Shwannommas

> (VS's) not AN's.

>

> Jennette

>

> ANA Membership?

>

> On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I

> did not receive a response at all. Which to me seems strange considering

> that " we " as a group of NF2ers probably deal more with acoustic neuromas

> then any other symptom of NF2, including the spine. (Just my personal

> observation based on email viewed.) We all have ANs, or our loved ones do.

> So I ask again, " Does anyone belong to the ANA? " If so, do you receive the

> ANA newsletter? "

> Thank you,

> JD in AZ

>

January 14, 2002

My understanding is that we (NF2ers) really have Vestibular Shwannommas (VS's) not AN's.

Jennette

ANA Membership?

On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I did not receive a response at all. Which to me seems strange considering that "we" as a group of NF2ers probably deal more with acoustic neuromas then any other symptom of NF2, including the spine. (Just my personal observation based on email viewed.) We all have ANs, or our loved ones do. So I ask again, "Does anyone belong to the ANA?" If so, do you receive the ANA newsletter?"

Thank you,

JD in AZ

January 14, 2002

So this is why they regrow eventually PROBABLY. I hate NF2!!!!!!!!

>

> SUSAN WROTE:

> Acoustic neuromas grow on the nerve sheath

> Nf2 grow through the nerve. Its something like that.

> I had what I was told was an acoustic neuroma removed years ago, its

only> when I had grown another one that they tested my son and found his

tumours> and decided we had Nf2.

>

January 14, 2002

Great q to ask the Review, , bc I'm not real sure why everyone,

including many docs (I'm guilty too) are still calling them AN's. Donna

explained it once... you there, Donna?

----- Original Message -----

and the difference would be?

> My understanding is that we (NF2ers) really have Vestibular Shwannommas

> (VS's) not AN's.

>

> Jennette

January 14, 2002

I used to Jeff, but the New Zealand one. I am on a mailing list and recieve old copies of ANA New South Wales, Anouncer ANA Queensland, both Australia. The Conection ANA Canada, ANA Atlanta, and Headline News BANA British ANA. The ones I have now are from June July August and September last year.Is that any help?.

>From: "Jeff Daharsh"

>Reply-To: NF2_Crew >To:

>Subject: ANA Membership? >Date: Mon, 14 Jan 2002 00:32:09 -0700 > >On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I >did not receive a response at all. Which to me seems strange considering >that "we" as a group of NF2ers probably deal more with acoustic neuromas >then any other symptom of NF2, including the spine. (Just my personal >observation based on email viewed.) We all have ANs, or our loved ones do. >So I ask again, "Does anyone belong to the ANA?" If so, do you receive the >ANA newsletter?" >Thank you, >JD in AZ > > Join the world’s largest e-mail service with MSN Hotmail. Click Here

January 14, 2002

Acoustic neuromas grow on the nerve sheathNf2 grow through the nerve. Its something like that.I had what I was told was an acoustic neuroma removed years ago, its only when I had grown another one that they tested my son and found his tumours and decided we had Nf2.

>From: cinnyd@... >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: ANA Membership? >Date: Mon, 14 Jan 2002 13:58:19 US/Eastern > >and the difference would be? > > > > My understanding is that we (NF2ers) really have Vestibular Shwannommas > > (VS's) not AN's. > > > > Jennette > > > > ANA Membership? > > > > > > On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I > > did not receive a response at all. Which to me seems strange considering > > that "we" as a group of NF2ers probably deal more with acoustic neuromas > > then any other symptom of NF2, including the spine. (Just my personal > > observation based on email viewed.) We all have ANs, or our loved ones do. > > So I ask again, "Does anyone belong to the ANA?" If so, do you receive the > > ANA newsletter?" > > Thank you, > > JD in AZ > > > > > > > >

January 14, 2002

I have long been a member of ANA, and was in fact very active for 13 years in the group; went to 13 national syposiums annually, started and ran the PIttsburgh Tri State Acoustic Neuroma Assoc for ten years--not knowing that I had NF2. I still receive the newsletter, and as a matter of fact this last one with the article by Martuza was really good.

Marie

Re: ANA Membership? >Date: Mon, 14 Jan 2002 13:58:19 US/Eastern > >and the difference would be? > > > > My understanding is that we (NF2ers) really have Vestibular Shwannommas > > (VS's) not AN's. > > > > Jennette > > > > ANA Membership? > > > > > > On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I > > did not receive a response at all. Which to me seems strange considering > > that "we" as a group of NF2ers probably deal more with acoustic neuromas > > then any other symptom of NF2, including the spine. (Just my personal > > observation based on email viewed.) We all have ANs, or our loved ones do. > > So I ask again, "Does anyone belong to the ANA?" If so, do you receive the > > ANA newsletter?" > > Thank you, > > JD in AZ > > > > > > > >

January 14, 2002

You know, I was a very active member of ANA, dealing with the TRAGEDY of having had a brain tumor and living with facial paralysis; funny your perspective on things; dealing with that, I thought it was very traumatic; now I look at people dealing with a unilateral AN, one sided hearing loss, and think, what wimps! But someone with cancer, 6 months to live, might think the same about us with NF2? Marie

Re: ANA Membership?

I was once a member here in OZ. I just wish all I had was an AN. Sounds like a picnic compared to NF2.

By the way I always wondered why the ANA people looked so sad when I told them I had NF2.

M

ANA Membership?

On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I did not receive a response at all. Which to me seems strange considering that "we" as a group of NF2ers probably deal more with acoustic neuromas then any other symptom of NF2, including the spine. (Just my personal observation based on email viewed.) We all have ANs, or our loved ones do. So I ask again, "Does anyone belong to the ANA?" If so, do you receive the ANA newsletter?"

Thank you,

JD in AZ

January 14, 2002

Oh my gosh , you have a much better memory than me! I didn't know I

had NF2 then, did I? The problem is captioning for deaf NF2 folks is SO

expensive, it is hard to justify the expense when such a small percentage of

their membership is NF. However, in Pgh. we had at MOST 100 people show up

for a big all day medical seminar. And out of those 100, me, , Al

Novak, Mike , Louise Maderer have NF. So that

s what--5 percent? That's why I am more involved with NF Inc. now. Marie

Re: ANA Membership?

>Its a very professional group compared to ALDA. I attended a conference in

'92

>(marie drew was there too, 1st time I met her. she tried to talk me out of

>surgery while we were cruising around San Diego Bay drinking margaritas, I

was

>anyhow, lol. I love you Marie!)

>

>They have tons of info on AN's. It gave me a great start in finding info on

>nf2, it also reassured me that I wasnt crazy when all these symptoms popped

up.

>However they are 99% people with unilateral AN's, different in many ways

but I

>tell you, the people i met there had as bad as balance as any of us

bilaterals!

>

>> No and Nope...never heard of them Jeff.

>> Carolann

>>

>> Jeff Daharsh wrote:

>>

>> > On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc.

>> >

>>

>

January 14, 2002

Been there Marie. BIG tragedy for me at 26 having a huge(4x5) brain tumour removed and losing my hearing and my face all droopy. Now days hey I wish I had just an AN.

>From: "Marie Drew"

>Reply-To: NF2_Crew >To:

>Subject: Re: ANA Membership? >Date: Mon, 14 Jan 2002 15:20:48 -0500 > >You know, I was a very active member of ANA, dealing with the TRAGEDY of having had a brain tumor and living with facial paralysis; funny your perspective on things; dealing with that, I thought it was very traumatic; now I look at people dealing with a unilateral AN, one sided hearing loss, and think, what wimps! But someone with cancer, 6 months to live, might think the same about us with NF2? Marie > Re: ANA Membership? > > > I was once a member here in OZ. I just wish all I had was an AN. Sounds like a picnic compared to NF2. > By the way I always wondered why the ANA people looked so sad when I told them I had NF2. > M > ANA Membership? > > > On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I did not receive a response at all. Which to me seems strange considering that "we" as a group of NF2ers probably deal more with acoustic neuromas then any other symptom of NF2, including the spine. (Just my personal observation based on email viewed.) We all have ANs, or our loved ones do. So I ask again, "Does anyone belong to the ANA?" If so, do you receive the ANA newsletter?" > Thank you, > JD in AZ > > > >

January 14, 2002

Yes it is different, but an offshoot of the US one. it is anac, Acoustic

Neuroma Association of Canada. They are a little more involved with NF2

than the USA; Fusca used to write a column for them.

marie

ANA Membership?

>Jeff I know Sheryn is a member of ANA. BUT Canadian one and I am not sure

>if it is different from U.S. Would imagine it would be.

>Take care

>Marne

>

January 14, 2002

Jeff,

I joined several monthes ago. Sadly, I only skim thru the newsletter as I don't have much reading time.

Blessings,

ANA Membership?

On Jan 8, I asked if anyone was a member of the Acoustic Neuroma Assoc. I did not receive a response at all. Which to me seems strange considering that "we" as a group of NF2ers probably deal more with acoustic neuromas then any other symptom of NF2, including the spine. (Just my personal observation based on email viewed.) We all have ANs, or our loved ones do. So I ask again, "Does anyone belong to the ANA?" If so, do you receive the ANA newsletter?"

Thank you,

JD in AZ

January 15, 2002

I am and have been an ANAC, as Marie said, Acoustic Neuroma Assossiation of

Canada, member for the past 13 years.The way I understand it, with modern

equipment it was discovered, the AN tumor actually was on the vestibular

nerves, more so then the Acoustic nerve and actually, a Scwannoma tumor, not

neuroma. So there has been a name change, its just slow catching on to the

change. Even at HEI, I still hear both referred to as AN's. Both unilateral

and NF2 AN's are really Vestibular Scwannaomas. Yes, the unilateral tumor

wraps around the nerve, the NF2 tumor grows through, (inside and out).

Anyone can submit their story or info. Marnie has, as has . Fusca

at one time had a column, haven't seen it the last while.. Susie Friesens

father, Philip, has also shared his past with NF2 with us in the ANAC

newsletter. There is a diagram of the two tumors in one of the newsletters,

when everything gets back to normal and I can find my scanner.........., I

send this to the crew, with the pics you are waiting for Marcus, .....darn

carpet.....the manager is finally back, mid next week. Like you , I

felt like I was misplaced at any gatherings of the AN's, for I was the only

one with NF2, everyone else was unilateral. Like at AA meetings we would

share a story about ourselves, I was always last, and felt they really did

not believe me. I have gotten the same reaction at Neurofibromatosis

meetings, I'm NF2 and everyone else is NF1.

Sheryn

January 15, 2002

The NF chapter here paid for four hours of real time ($350) for me to attend

their meeting, I was floored! Very nice group.

Marie Drew wrote:

> But that is why we NF2 folks have got to get out there and make ourselves

> known. We have gotten a lot of support for NF2 from NF Inc. and they are

> coming to LV to meet some of the NF2 folks. And some of the chapters have

> become more aware of, and are reaching out to, NF2 folks now. Marie

> Re: ANA Membership?

>

> >I am and have been an ANAC, as Marie said, Acoustic Neuroma Assossiation of

> >Canada, member for the past 13 years.The way I understand it, with modern

> >equipment it was discovered, the AN tumor actually was on the vestibular

> >nerves, more so then the Acoustic nerve and actually, a Scwannoma tumor,

> not

> >neuroma. So there has been a name change, its just slow catching on to the

> >change. Even at HEI, I still hear both referred to as AN's. Both unilateral

> >and NF2 AN's are really Vestibular Scwannaomas. Yes, the unilateral tumor

> >wraps around the nerve, the NF2 tumor grows through, (inside and out).

> >Anyone can submit their story or info. Marnie has, as has .

> Fusca

> >at one time had a column, haven't seen it the last while.. Susie Friesens

> >father, Philip, has also shared his past with NF2 with us in the ANAC

> >newsletter. There is a diagram of the two tumors in one of the newsletters,

> >when everything gets back to normal and I can find my scanner.........., I

> >send this to the crew, with the pics you are waiting for Marcus, .....darn

> >carpet.....the manager is finally back, mid next week. Like you , I

> >felt like I was misplaced at any gatherings of the AN's, for I was the only

> >one with NF2, everyone else was unilateral. Like at AA meetings we would

> >share a story about ourselves, I was always last, and felt they really did

> >not believe me. I have gotten the same reaction at Neurofibromatosis

> >meetings, I'm NF2 and everyone else is NF1.

> >Sheryn

> >

January 15, 2002

But that is why we NF2 folks have got to get out there and make ourselves

known. We have gotten a lot of support for NF2 from NF Inc. and they are

coming to LV to meet some of the NF2 folks. And some of the chapters have

become more aware of, and are reaching out to, NF2 folks now. Marie

Re: ANA Membership?

>I am and have been an ANAC, as Marie said, Acoustic Neuroma Assossiation of

>Canada, member for the past 13 years.The way I understand it, with modern

>equipment it was discovered, the AN tumor actually was on the vestibular

>nerves, more so then the Acoustic nerve and actually, a Scwannoma tumor,

not

>neuroma. So there has been a name change, its just slow catching on to the

>change. Even at HEI, I still hear both referred to as AN's. Both unilateral

>and NF2 AN's are really Vestibular Scwannaomas. Yes, the unilateral tumor

>wraps around the nerve, the NF2 tumor grows through, (inside and out).

>Anyone can submit their story or info. Marnie has, as has .

Fusca

>at one time had a column, haven't seen it the last while.. Susie Friesens

>father, Philip, has also shared his past with NF2 with us in the ANAC

>newsletter. There is a diagram of the two tumors in one of the newsletters,

>when everything gets back to normal and I can find my scanner.........., I

>send this to the crew, with the pics you are waiting for Marcus, .....darn

>carpet.....the manager is finally back, mid next week. Like you , I

>felt like I was misplaced at any gatherings of the AN's, for I was the only

>one with NF2, everyone else was unilateral. Like at AA meetings we would

>share a story about ourselves, I was always last, and felt they really did

>not believe me. I have gotten the same reaction at Neurofibromatosis

>meetings, I'm NF2 and everyone else is NF1.

>Sheryn

>

January 17, 2002

Marie makes an excellent point. We as NF2ers need everyone's help in curing

this. Allot more people have ANs then NF2. I would think with almost every

person with NF2 having acoustic neuromas, (ok Vestibular Swannomas, close

enough) that we would be interested in being a part of the ANA. I 'm not

sure on this but it might be because of people with just an acoustic

neuroma, non-NF2, and that's why the money for research in the ABI or the

Cochlear Implant was brought about. We can't do this alone. And even though

most of us know more about ANs and NF2 then our doctors do, reading about

updates and what's new is always good reading.

Later,

JD in AZ

PS: I'm still waiting to hear back from the ANA for permission to scan and

post the article on Early AN Treatment.

Re: ANA Membership?

> >

> > >I am and have been an ANAC, as Marie said, Acoustic Neuroma

Assossiation of

> > >Canada, member for the past 13 years.The way I understand it, with

modern

> > >equipment it was discovered, the AN tumor actually was on the

vestibular

> > >nerves, more so then the Acoustic nerve and actually, a Scwannoma

tumor,

> > not

> > >neuroma. So there has been a name change, its just slow catching on to

the

> > >change. Even at HEI, I still hear both referred to as AN's. Both

unilateral

> > >and NF2 AN's are really Vestibular Scwannaomas. Yes, the unilateral

tumor

> > >wraps around the nerve, the NF2 tumor grows through, (inside and out).

> > >Anyone can submit their story or info. Marnie has, as has .

> > Fusca

> > >at one time had a column, haven't seen it the last while.. Susie

Friesens

> > >father, Philip, has also shared his past with NF2 with us in the ANAC

> > >newsletter. There is a diagram of the two tumors in one of the

newsletters,

> > >when everything gets back to normal and I can find my

scanner.........., I

> > >send this to the crew, with the pics you are waiting for Marcus,

......darn

> > >carpet.....the manager is finally back, mid next week. Like you ,

I

> > >felt like I was misplaced at any gatherings of the AN's, for I was the

only

> > >one with NF2, everyone else was unilateral. Like at AA meetings we

would

> > >share a story about ourselves, I was always last, and felt they really

did

> > >not believe me. I have gotten the same reaction at Neurofibromatosis

> > >meetings, I'm NF2 and everyone else is NF1.

> > >Sheryn

> > >

January 17, 2002