Pro side of ABI

March 18, 2002

I think really the main point brought up that people seemed to perceive as ANTI ABI was the complications that can go with surgery. What was being spelt out to you all was a word of caution. You can come out a lot worse off or even die.

The JOHN HOLE experience should never be forgotten.

Marcus not wanting to strangle anyone .

March 18, 2002

I think really the main point brought up that people seemed to perceive as ANTI ABI was the complications that can go with surgery. What was being spelt out to you all was a word of caution. You can come out a lot worse off or even die.

The JOHN HOLE experience should never be forgotten.

Marcus not wanting to strangle anyone .

March 18, 2002

Complications can go with ANY surgery, ABI or not. Have heard of some

horrible AN surgeries, no ABI involved, but it would most likely be

assumed the culprit if it had been.

You can die from AN removal alone. On a healthy

(as can be) NF2 person, the risks (in addition to the AN removal) are

minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI "

meaning " I had a good experience, here it is since I know many of you

are considering it and since some of you have heard the horror

stories. " Not meant as opposite of " Anti Abi "

> I think really the main point brought up that people seemed to

perceive as ANTI ABI was the complications that can go with surgery.

What was being spelt out to you all was a word of caution. You can

come out a lot worse off or even die.

> The JOHN HOLE experience should never be forgotten.

> Marcus not wanting to strangle anyone .

March 18, 2002

Complications can go with ANY surgery, ABI or not. Have heard of some

horrible AN surgeries, no ABI involved, but it would most likely be

assumed the culprit if it had been.

You can die from AN removal alone. On a healthy

(as can be) NF2 person, the risks (in addition to the AN removal) are

minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI "

meaning " I had a good experience, here it is since I know many of you

are considering it and since some of you have heard the horror

stories. " Not meant as opposite of " Anti Abi "

> I think really the main point brought up that people seemed to

perceive as ANTI ABI was the complications that can go with surgery.

What was being spelt out to you all was a word of caution. You can

come out a lot worse off or even die.

> The JOHN HOLE experience should never be forgotten.

> Marcus not wanting to strangle anyone .

March 18, 2002

Complications can go with ANY surgery, ABI or not. Have heard of some

horrible AN surgeries, no ABI involved, but it would most likely be

assumed the culprit if it had been.

You can die from AN removal alone. On a healthy

(as can be) NF2 person, the risks (in addition to the AN removal) are

minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI "

meaning " I had a good experience, here it is since I know many of you

are considering it and since some of you have heard the horror

stories. " Not meant as opposite of " Anti Abi "

> I think really the main point brought up that people seemed to

perceive as ANTI ABI was the complications that can go with surgery.

What was being spelt out to you all was a word of caution. You can

come out a lot worse off or even die.

> The JOHN HOLE experience should never be forgotten.

> Marcus not wanting to strangle anyone .

March 18, 2002

YEah I know all that Carla I'm not against them, and I'm really very happy

for all the people that have them . I wouldn't stop my own sons from having

them if they wanted one.

I think remembering how thought it was going to correct so many wrongs

in his life that sticks in my mind. When I read others say the same thing

here it scares me. Remember how we all wrote letters of support to the

British government so that could have his ABI ?

Theres a lesson in it, thats all.

M

Re: Pro side of ABI

> Complications can go with ANY surgery, ABI or not. Have heard of some

> horrible AN surgeries, no ABI involved, but it would most likely be

> assumed the culprit if it had been.

> You can die from AN removal alone. On a healthy

> (as can be) NF2 person, the risks (in addition to the AN removal) are

> minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI "

> meaning " I had a good experience, here it is since I know many of you

> are considering it and since some of you have heard the horror

> stories. " Not meant as opposite of " Anti Abi "

>

> > I think really the main point brought up that people seemed to

> perceive as ANTI ABI was the complications that can go with surgery.

> What was being spelt out to you all was a word of caution. You can

> come out a lot worse off or even die.

> > The JOHN HOLE experience should never be forgotten.

> > Marcus not wanting to strangle anyone .

>

March 18, 2002

YEah I know all that Carla I'm not against them, and I'm really very happy

for all the people that have them . I wouldn't stop my own sons from having

them if they wanted one.

I think remembering how thought it was going to correct so many wrongs

in his life that sticks in my mind. When I read others say the same thing

here it scares me. Remember how we all wrote letters of support to the

British government so that could have his ABI ?

Theres a lesson in it, thats all.

M

Re: Pro side of ABI

> Complications can go with ANY surgery, ABI or not. Have heard of some

> horrible AN surgeries, no ABI involved, but it would most likely be

> assumed the culprit if it had been.

> You can die from AN removal alone. On a healthy

> (as can be) NF2 person, the risks (in addition to the AN removal) are

> minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI "

> meaning " I had a good experience, here it is since I know many of you

> are considering it and since some of you have heard the horror

> stories. " Not meant as opposite of " Anti Abi "

>

> > I think really the main point brought up that people seemed to

> perceive as ANTI ABI was the complications that can go with surgery.

> What was being spelt out to you all was a word of caution. You can

> come out a lot worse off or even die.

> > The JOHN HOLE experience should never be forgotten.

> > Marcus not wanting to strangle anyone .

>

March 18, 2002

YEah I know all that Carla I'm not against them, and I'm really very happy

for all the people that have them . I wouldn't stop my own sons from having

them if they wanted one.

I think remembering how thought it was going to correct so many wrongs

in his life that sticks in my mind. When I read others say the same thing

here it scares me. Remember how we all wrote letters of support to the

British government so that could have his ABI ?

Theres a lesson in it, thats all.

M

Re: Pro side of ABI

> Complications can go with ANY surgery, ABI or not. Have heard of some

> horrible AN surgeries, no ABI involved, but it would most likely be

> assumed the culprit if it had been.

> You can die from AN removal alone. On a healthy

> (as can be) NF2 person, the risks (in addition to the AN removal) are

> minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI "

> meaning " I had a good experience, here it is since I know many of you

> are considering it and since some of you have heard the horror

> stories. " Not meant as opposite of " Anti Abi "

>

> > I think really the main point brought up that people seemed to

> perceive as ANTI ABI was the complications that can go with surgery.

> What was being spelt out to you all was a word of caution. You can

> come out a lot worse off or even die.

> > The JOHN HOLE experience should never be forgotten.

> > Marcus not wanting to strangle anyone .

>

March 18, 2002

This is some what off the subject......When I went for the ABI @ HEI in

1996, I was given a few sheets that listed the many risks involved in the

implant. I don't believe this was info of a personal nature pertaining only

to me and risks listed to me, but rather, I thought, lists of risks involved

in general, to everyone undergoing the procedure. It was voluntarily offered

to us to see the HEI Library and they duplicated any and all material and

info my husband and I requested. There was info involving various case

studies, failures and successes in this room, library, in upper HEI. We

were welcome to take all we wanted, and took several inches worth of

duplicated info home with us (4 inches approximately of 8 1/2 x 11 paper

worth in fact). They did this duplicating at no charge to us. We had

received the same offer in '95, before I actually went down for the implant.

I have mentioned the library once on here in the past, are the rest of you

aware of this Libray?, I have never heard anyone else mention being in the

library......It also covers info about various other surgeries....involving

AN's etc. The end result....I decided to have my 1st AN removed and the ABI

possibly on my 2nd side when the time should come for removal of my 2nd AN.

YES...the list of possible risks were scary and very real to me and I'm

hopeful these will grow to be less risk for the ABI when my time comes, for

I had encountered many bad results for a tumour GLIOMA, in the brainstem,

just above the medullary junction (brainstem and spine). And this tumour

required 4 long surgeries and results were effecting my body in most every

way and function, or lack of function as was the case in many respects. Its

too bad the decision can't be easier then it is....so difficult...... for

everyone involved. But I think s results present a very valid question

we should present to each and every dr attending a procedure for us, we must

ask, HAVE YOU DONE THIS BEFORE< HOW OFTE<?????

Sheryn

_________________________________________-

To: <NF2_Crew >

> Everybody KNOWS the pros! Heck, HEI will sing the praises of the ABI till

> they are blue in the face, but unless you ask the right questions, no one

> will tell you what could happen. They don't tell you about all their

horror

> stories, do they? Its places like this that we need to hear about

> EVERYTHING that could or couldn't happen. My person feeling right now is

> that hearing is a wonderful great luxury (for ME,) and am I willing to

risk

> my health and my way of life so that I can have this luxury back? No, not

> at this point. You're right, I'm talking about me, and surely everyone

here

> understands that everything I say is MHO. For all the ppl like you who

> adore their abi, there are just as many whose ABI's don't work, had

> complications during surgery, who don't like it and don't wear it. I

think

> the negatives should be discussed as well as the positives. You don't

have

> to defend being able to hear the water running, hear a pin drop (??), hear

> the microwave beep, hear the doorbell ring etc etc, they can stand up for

> themselves. People need to know the negs of the ABI too.

>

> Re: Pro side of ABI

>

> I never said everyone will be perfect, I never said I was, I never said oh

> heck JL, it's ok to do it with regrowths. But I want the ppl who are

still

> making decisions to see the " pro side " as well. (notice my subject line?)

> I

> think and some others are helping cover the negative stuff, why

can't

> I

> be one to cover the positive? I never said YOU should go get one. I know

> you have a regrowth up there, I don't think I would do one with that

either.

>

> BUT you shouldn't knock the type of sound it gives until you've heard it

> yourself, it's a whole diff world even though we're still deaf. lol I

never

>

> said you should run and get one JL, calm down.

> Damn right, warm and fuzzy. You haven't had a surgery since I've known

you,

>

> I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin a

> chance like this!

>

> << " None of you can outweigh the benefit (decide to get one or not bc

> you don't want just " beeps " you want more..) unless you know what it's

like

>

> having one. "

>

> Yeah... I can! Its very warm and fuzzy what you seem to be experiencing,

> Carla, but people need to be aware that BAD thing happen too. There is

no

> reason why ppl like me shouldn't be able to say " I don't want to risk

> having

> a stomach tube or not being able to swallow or WORSE " just so MAYBE I'll

be

> able to detect sounds that I've gone without for 11 years. If it was

> guaranteed to work and guaranteed that I wouldn't have serious

> complications

> during surgery, then I would go for it. If you're happy and well

adjusted

> to deafness, why take the risks involved with major brain surgery? Until

I

> see more success stories with implanting during RECURRENT AN surgery,

I'll

> just pass, thank you very much.

>

> na <-- in defense of not messing with my HEALTH >>

>

March 18, 2002