Re: New Member (jchartra@...)

[Guest guest]

Maybe this is something you need to get clear with the docs before

surgery, knowing now Rick's experience; if he had woke up without the ABI,

and they told him their were complications and so they decided not to do

it, after he had traveled all the way from New York, no doubt he would not

have been too happy. So you need to communicate to the doc, IF their are

complications during surgery, I want the ABI or stop the surgery. Just my

two cents. Marie

S. Skyer, Jr. wrote:

>

>

> , yes the abi surgery was the cause. The surgery removes a tumur

> first. If probems developed why would they continue? ABI protocol is

> their priority irregardless of complications. Happy yours seems to be

> ok. Good luck with " turnning it on " .

[Guest guest]

It happened to Adam too, and he died recently. It could work, I

investigated alot. There is a huge risk, benefit? I have had several

cranial surgeries, my sisters too, and never once a stroke. Scare

tissue from previous work might not allow it to work. But mark my

words: protocal comes fisrt to them, not your health. Hope this helps.

[Guest guest]

, yes the abi surgery was the cause. The surgery removes a tumur

first. If probems developed why would they continue? ABI protocol is

their priority irregardless of complications. Happy yours seems to be

ok. Good luck with " turnning it on " .

[Guest guest]

Oh, I understand now, they can speak a little Strine INFJ really means the

Long Drop.

Hey thats a new one on me, eyes not quite up to scratch with the mod Strine

Mate.

America playing cricket that's a good one, can you believe the Aus Boys are

in the World Cup Final. I had albutgivnem the flick Mate.

C,ya in the soup,

Banana Bender .

Re: New Member (jchartra@...)

>

>

> mate,

>

> The day the Ya.......Americans speak English, ie. Aussie, is the day they

> win the World Cup Cricket !!

>

> And as for INFJ, isn't that Aussie bush for I Need Fig Juice, I got that

off

> Albie Mangles, fair dinkum !!!

>

> Adam, the big kid from Oz

>

[Guest guest]

Oh DO NOT listen to him. 22 is so young!!!! Im only 30 and 22 sounds

lie a youngin to me :-)

Misha64@... wrote:

> From: Misha64@...

>

> LOL!!!!!! So you wouldn't consider 22 a youngin huh? Sooooo how old are you?!

> Hugs, In Denial land AZ

>

[Guest guest]

Dang ,

You hit the nail in the head! I felt the same way you do. I wanted them to

perserve my hearing so much and I was very angry ( kind of still am) that

they didn't.

After when I became deaf many people were like, " why don't you learn Sign

Langauge and 'adapt' yourself into the Deaf Culture? " So I learned and I'm

starting to see, I don't belong. (Not entirely anyways.) This year I'm

starting to say, " shine it all " .

Just wanted to say I know how you feel.

And when people say, " you can adapt " ? You really can't.

Mark

----Original Message Follows----

From: ffusca@... ( A. Fusca)

Reply-To: NF2_Crewonelist

To: NF2_Crewonelist

Subject: Re: New Member (jchartra@...)

Date: Mon, 21 Jun 1999 20:59:56 -0400

From: ffusca@... ( A. Fusca)

Marie,

I had a debulking done in an attempt to save my hearing in '86. The doctor

figured it was the best thing for me and so did I. I could not see myself as

a deaf person and would have done just about anything to stay hearing.

Unfortunately, the debulking did not work so I became deaf and there was

nothing I could do about it.

As the years past, I began to realize the seriousness of NF2. What I began

to think was that deafness is not the worst thing about NF2. I could live

(almost) happily as a deaf person. I would not exactly like it but I have

come to see deafness as relatively minor compared to NF2. My advice to

anyone with NF2 is to take care of your long-term health first. If you can

save your hearing, that is great. But don't go thinking that saving your

hearing is the only thing that matters.

It took a long time for me to adjust to deafness - perhaps 5 years or

longer. I don't think the 'adjustment' will ever be complete. But there came

a day when I realized deafness was really not that bad. I think you have to

be deaf to really see this. Also, when I became deaf, I found deafness to be

far worse than I had ever imagined. The awkward part is that your body has

immense capability to adapt.

I've mentioned this a few times and perhaps people a sick of hearing it but

that is my feeling. I hope this sorta makes sense to someone.

>

>

>Fight to save that remaining hearing; I have had a debulking, and am

still

>hearing, tho I know it will not be forever; It is an option, but means

more

>surgery. Marie

>

[Guest guest]

Marie,

I had a debulking done in an attempt to save my hearing in '86. The doctor

figured it was the best thing for me and so did I. I could not see myself as

a deaf person and would have done just about anything to stay hearing.

Unfortunately, the debulking did not work so I became deaf and there was

nothing I could do about it.

As the years past, I began to realize the seriousness of NF2. What I began

to think was that deafness is not the worst thing about NF2. I could live

(almost) happily as a deaf person. I would not exactly like it but I have

come to see deafness as relatively minor compared to NF2. My advice to

anyone with NF2 is to take care of your long-term health first. If you can

save your hearing, that is great. But don't go thinking that saving your

hearing is the only thing that matters.

It took a long time for me to adjust to deafness - perhaps 5 years or

longer. I don't think the 'adjustment' will ever be complete. But there came

a day when I realized deafness was really not that bad. I think you have to

be deaf to really see this. Also, when I became deaf, I found deafness to be

far worse than I had ever imagined. The awkward part is that your body has

immense capability to adapt.

I've mentioned this a few times and perhaps people a sick of hearing it but

that is my feeling. I hope this sorta makes sense to someone.

>

>

>Fight to save that remaining hearing; I have had a debulking, and am still

>hearing, tho I know it will not be forever; It is an option, but means more

>surgery. Marie

>

[Guest guest]

Marie and Rick,

I had a stroke in my '86 operation and I was in a therapy hospital for 6

months afterwards. Any operation can cause a stroke. There were lots of

people in the therapy hospital with strokes. Most were elderly but there was

a teenager in there too (I am not sure what cause it in her case). I spoke

with a woman who had a stroke while delivering a baby!

NF2 type operations are fairly serious and just about anything can happen.

Perhaps we forget this since constant operations are a fact of life for us.

Most people would drop dead if they knew the stuff we are going through.

>

>

>Rick, do you really think it was the abi that caused the problems, or would

>the an removal have possibly caused the stroke anyhow? I want an ABI, but

>not at the price you are paying. Marie

>

> S. Skyer, Jr. wrote:

>

>>

>>

>> some abi work can dibilate you, ask me, I have a tracheaa tube and ubes

>> in the gut for feedings. Can't walk well and had stroke, think about it

>> carefully.

>

>

>

>

>

[Guest guest]

For all you young pups out there. They were doing GK in Sweden in the early

1950's (that's even a few years before I was born!)

>

>

>Yes they did. The GK and the X Knife were around as early as 1990.

>

>It goes to show my experiences with doctors. They're also infallible so it

>taught me a very valuable lesson: always get a second opinion.

>

>Mark

>

[Guest guest]

I guess what I was trying to establish was if strokes were a lot more common if

the had the ABI in addition to AN removal; that does not seem the case; but I

think (and I'm not sure I am correct about this) that Rick's point was that he

felt there were complications BEFORE the ABI installation and they went ahead

with the ABI?? I would sure have to ask the details about that. Marie

A. Fusca wrote:

> From: ffusca@... ( A. Fusca)

>

> Marie and Rick,

>

> I had a stroke in my '86 operation and I was in a therapy hospital for 6

> months afterwards. Any operation can cause a stroke. There were lots of

> people in the therapy hospital with strokes. Most were elderly but there was

> a teenager in there too (I am not sure what cause it in her case). I spoke

> with a woman who had a stroke while delivering a baby!

>

> NF2 type operations are fairly serious and just about anything can happen.

> Perhaps we forget this since constant operations are a fact of life for us.

> Most people would drop dead if they knew the stuff we are going through.

>

>

>

> >

> >

> >Rick, do you really think it was the abi that caused the problems, or would

> >the an removal have possibly caused the stroke anyhow? I want an ABI, but

> >not at the price you are paying. Marie

> >

> > S. Skyer, Jr. wrote:

> >

> >>

> >>

> >> some abi work can dibilate you, ask me, I have a tracheaa tube and ubes

> >> in the gut for feedings. Can't walk well and had stroke, think about it

> >> carefully.

> >

> >

> >

> >

> >

[Guest guest]

With being HoH it is a different culture. Your hearing friends slowly drift

away because the get tired of repeating stuff, and you can't hear them in

crowded places like restaurants and bars. It is easier for them to walk

away than to deal with it. But then you are not totally deaf and don't fit

in their world either. Ain't life a bitch! My the heck with them, my dos

still love me.

Mikey A in Pittsburgh

At 07:56 PM 6/21/99 PDT, you wrote:

>

>

>Dang ,

>

>You hit the nail in the head! I felt the same way you do. I wanted them to

>perserve my hearing so much and I was very angry ( kind of still am) that

>they didn't.

>

>After when I became deaf many people were like, " why don't you learn Sign

>Langauge and 'adapt' yourself into the Deaf Culture? " So I learned and I'm

>starting to see, I don't belong. (Not entirely anyways.) This year I'm

>starting to say, " shine it all " .

>

>Just wanted to say I know how you feel.

>

>And when people say, " you can adapt " ? You really can't.

>

>Mark

>

>

>----Original Message Follows----

>From: ffusca@... ( A. Fusca)

>Reply-To: NF2_Crewonelist

>To: NF2_Crewonelist

>Subject: Re: New Member (jchartra@...)

>Date: Mon, 21 Jun 1999 20:59:56 -0400

>

>From: ffusca@... ( A. Fusca)

>

>Marie,

>

>I had a debulking done in an attempt to save my hearing in '86. The doctor

>figured it was the best thing for me and so did I. I could not see myself as

>a deaf person and would have done just about anything to stay hearing.

>Unfortunately, the debulking did not work so I became deaf and there was

>nothing I could do about it.

>

>As the years past, I began to realize the seriousness of NF2. What I began

>to think was that deafness is not the worst thing about NF2. I could live

>(almost) happily as a deaf person. I would not exactly like it but I have

>come to see deafness as relatively minor compared to NF2. My advice to

>anyone with NF2 is to take care of your long-term health first. If you can

>save your hearing, that is great. But don't go thinking that saving your

>hearing is the only thing that matters.

>

>It took a long time for me to adjust to deafness - perhaps 5 years or

>longer. I don't think the 'adjustment' will ever be complete. But there came

>a day when I realized deafness was really not that bad. I think you have to

>be deaf to really see this. Also, when I became deaf, I found deafness to be

>far worse than I had ever imagined. The awkward part is that your body has

>immense capability to adapt.

>

>I've mentioned this a few times and perhaps people a sick of hearing it but

>that is my feeling. I hope this sorta makes sense to someone.

>

>

>

> >

> >

> >Fight to save that remaining hearing; I have had a debulking, and am

>still

> >hearing, tho I know it will not be forever; It is an option, but means

>more

> >surgery. Marie

> >

>

>

>

[Guest guest]

At 11:34 AM 6/22/99 -0400, you wrote:

>

>

>

>With being HoH it is a different culture. Your hearing friends slowly drift

>away because the get tired of repeating stuff, and you can't hear them in

>crowded places like restaurants and bars. It is easier for them to walk

>away than to deal with it. But then you are not totally deaf and don't fit

>in their world either. Ain't life a bitch! My the heck with them, my dogs

>still love me.

>

>Mikey A in Pittsburgh Had to fix the typo (dogs)

>

>

[Guest guest]

was that " dos " supposed to be dogs?? If so, that is more reason for me to get

one! Marie

ashley wrote:

>

>

> With being HoH it is a different culture. Your hearing friends slowly drift

> away because the get tired of repeating stuff, and you can't hear them in

> crowded places like restaurants and bars. It is easier for them to walk

> away than to deal with it. But then you are not totally deaf and don't fit

> in their world either. Ain't life a bitch! My the heck with them, my dos

> still love me.

>

> Mikey A in Pittsburgh

>

> At 07:56 PM 6/21/99 PDT, you wrote:

> >

> >

> >Dang ,

> >

> >You hit the nail in the head! I felt the same way you do. I wanted them to

> >perserve my hearing so much and I was very angry ( kind of still am) that

> >they didn't.

> >

> >After when I became deaf many people were like, " why don't you learn Sign

> >Langauge and 'adapt' yourself into the Deaf Culture? " So I learned and I'm

> >starting to see, I don't belong. (Not entirely anyways.) This year I'm

> >starting to say, " shine it all " .

> >

> >Just wanted to say I know how you feel.

> >

> >And when people say, " you can adapt " ? You really can't.

> >

> >Mark

> >

> >

> >----Original Message Follows----

> >From: ffusca@... ( A. Fusca)

> >Reply-To: NF2_Crewonelist

> >To: NF2_Crewonelist

> >Subject: Re: New Member (jchartra@...)

> >Date: Mon, 21 Jun 1999 20:59:56 -0400

> >

> >From: ffusca@... ( A. Fusca)

> >

> >Marie,

> >

> >I had a debulking done in an attempt to save my hearing in '86. The doctor

> >figured it was the best thing for me and so did I. I could not see myself as

> >a deaf person and would have done just about anything to stay hearing.

> >Unfortunately, the debulking did not work so I became deaf and there was

> >nothing I could do about it.

> >

> >As the years past, I began to realize the seriousness of NF2. What I began

> >to think was that deafness is not the worst thing about NF2. I could live

> >(almost) happily as a deaf person. I would not exactly like it but I have

> >come to see deafness as relatively minor compared to NF2. My advice to

> >anyone with NF2 is to take care of your long-term health first. If you can

> >save your hearing, that is great. But don't go thinking that saving your

> >hearing is the only thing that matters.

> >

> >It took a long time for me to adjust to deafness - perhaps 5 years or

> >longer. I don't think the 'adjustment' will ever be complete. But there came

> >a day when I realized deafness was really not that bad. I think you have to

> >be deaf to really see this. Also, when I became deaf, I found deafness to be

> >far worse than I had ever imagined. The awkward part is that your body has

> >immense capability to adapt.

> >

> >I've mentioned this a few times and perhaps people a sick of hearing it but

> >that is my feeling. I hope this sorta makes sense to someone.

> >

> >

> >

> > >

> > >

> > >Fight to save that remaining hearing; I have had a debulking, and am

> >still

> > >hearing, tho I know it will not be forever; It is an option, but means

> >more

> > >surgery. Marie

> > >

> >

> >

> >

[Guest guest]

In a message dated 6/22/99 9:56:57 PM Eastern Daylight Time,

dongrim@... writes:

<< I've gotta agree, after all my " faithful " friends got tired of hanging out

with a deaf guy. My dog picked up the slack. He couldn't care less if I can

hear and he never asks to borrow money either!

>>

Yeah same here too, Today I went to an Open-Captioned film showing and even

felt out of place among the deaf people since I don't sign very well at all

(Joan can attest to that!)

And beyond trying once or twice, most of my hearing friends stopped hanging

out with me because it's too hard to communicate

Pete

[Guest guest]

In the hosp for 6 months! wow, thats a long time. Happy things worked

out for you and yes happy that the stroke didn't have all the

ramifications that it did for " us. "

[Guest guest]

At 11:34 AM 6/22/99 -0400, you wrote:

>

>

>

>With being HoH it is a different culture. Your hearing friends slowly drift

>away because the get tired of repeating stuff, and you can't hear them in

>crowded places like restaurants and bars. It is easier for them to walk

>away than to deal with it. But then you are not totally deaf and don't fit

>in their world either. Ain't life a bitch! My the heck with them, my dos

>still love me.

>

>Mikey A in Pittsburgh

Mikey:

You are soooooo correct! I am HOH (nearly deaf w/o my hearing aids, just

ask Carla!) and no one seems to know where I am coming from. I get so

frustrated! Oh well! )

Sherry

[Guest guest]

I've gotta agree, after all my " faithful " friends got tired of hanging out

with a deaf guy. My dog picked up the slack. He couldn't care less if I can

hear and he never asks to borrow money either!

Re: New Member (jchartra@...)

> >Date: Mon, 21 Jun 1999 20:59:56 -0400

> >

> >From: ffusca@... ( A. Fusca)

> >

> >Marie,

> >

> >I had a debulking done in an attempt to save my hearing in '86. The

doctor

> >figured it was the best thing for me and so did I. I could not see

myself as

> >a deaf person and would have done just about anything to stay hearing.

> >Unfortunately, the debulking did not work so I became deaf and there was

> >nothing I could do about it.

> >

> >As the years past, I began to realize the seriousness of NF2. What I

began

> >to think was that deafness is not the worst thing about NF2. I could

live

> >(almost) happily as a deaf person. I would not exactly like it but I

have

> >come to see deafness as relatively minor compared to NF2. My advice to

> >anyone with NF2 is to take care of your long-term health first. If you

can

> >save your hearing, that is great. But don't go thinking that saving your

> >hearing is the only thing that matters.

> >

> >It took a long time for me to adjust to deafness - perhaps 5 years or

> >longer. I don't think the 'adjustment' will ever be complete. But there

came

> >a day when I realized deafness was really not that bad. I think you have

to

> >be deaf to really see this. Also, when I became deaf, I found deafness

to be

> >far worse than I had ever imagined. The awkward part is that your body

has

> >immense capability to adapt.

> >

> >I've mentioned this a few times and perhaps people a sick of hearing it

but

> >that is my feeling. I hope this sorta makes sense to someone.

> >

> >

> >

> > >

> > >

> > >Fight to save that remaining hearing; I have had a debulking, and am

> >still

> > >hearing, tho I know it will not be forever; It is an option, but means

> >more

> > >surgery. Marie

> > >

> >

> >

> >

[Guest guest]

>

>

>I've gotta agree, after all my " faithful " friends got tired of hanging out

>with a deaf guy. My dog picked up the slack. He couldn't care less if I can

>hear and he never asks to borrow money either!

Yea, but don't forget you have to bribe your dog to love you. Stop feeding

the animal and see where that gets you.

Cruel world, eh??

[Guest guest]

Make sure you get all the pros and cons with the ABI surgery and then weigh

them, then decide. It's true we don't have medical degrees and we don't have

the experience as doctors have with NF2, but we can ask questions and it's

our decision, not theirs.

It's up for us to decide if the risk are worth it for them to go on.

However, with my experience, it some doctors tend to push you toward one

direction more than the other. Some tend to have certain biases toward one

treatment, and if that happens, I'd like to know the benefits and pitfalls

of both then decide.

But then again, I want to repeat: it's your decision. If your specific

doctor doesn't agree, hey, what can he/she do.

Mark

----Original Message Follows----

Reply-To: NF2_Crewonelist

To: NF2_Crewonelist

Subject: Re: New Member (jchartra@...)

Date: Tue, 22 Jun 1999 09:50:37 -0400

I guess what I was trying to establish was if strokes were a lot more common

if

the had the ABI in addition to AN removal; that does not seem the case; but

I

think (and I'm not sure I am correct about this) that Rick's point was that

he

felt there were complications BEFORE the ABI installation and they went

ahead

with the ABI?? I would sure have to ask the details about that. Marie

A. Fusca wrote:

> From: ffusca@... ( A. Fusca)

>

> Marie and Rick,

>

> I had a stroke in my '86 operation and I was in a therapy hospital for 6

> months afterwards. Any operation can cause a stroke. There were lots of

> people in the therapy hospital with strokes. Most were elderly but there

was

> a teenager in there too (I am not sure what cause it in her case). I

spoke

> with a woman who had a stroke while delivering a baby!

>

> NF2 type operations are fairly serious and just about anything can

happen.

> Perhaps we forget this since constant operations are a fact of life for

us.

> Most people would drop dead if they knew the stuff we are going through.

>

>

>

> >

> >

> >Rick, do you really think it was the abi that caused the problems, or

would

> >the an removal have possibly caused the stroke anyhow? I want an ABI,

but

> >not at the price you are paying. Marie

> >

> > S. Skyer, Jr. wrote:

> >

> >>

> >>

> >> some abi work can dibilate you, ask me, I have a tracheaa tube and

ubes

> >> in the gut for feedings. Can't walk well and had stroke, think about

it

> >> carefully.

> >

> >

> >

> >

> >

[Guest guest]

>Yea, but don't forget you have to bribe your dog to love you. Stop feeding

>the animal and see where that gets you.

>

>Cruel world, eh??

>

>

>

>

He'll still love you, but in a different way, he'll love the tatse of you.

Hey...it's still love

Mike

[Guest guest]

Mike,

You got a point there!! But in that case, the love will only be short term

(unless the dog happens to have a freezer). Love 'em and Leave 'em!

(dogless in Toronto but the kids get all excited when they see one)

>

>

>>Yea, but don't forget you have to bribe your dog to love you. Stop feeding

>>the animal and see where that gets you.

>>

>>Cruel world, eh??

>>

>>

>>

>>

>He'll still love you, but in a different way, he'll love the tatse of you.

>Hey...it's still love

>

>Mike

>

>

>