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RE: Digest Number 221

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Hey Rosco....

Sorry for using the word OUR. I certainly didn't mean to imply that I

represented the CREW's view. When I said OUR, I meant my 3 NF2 afflicted

family members who have had multiple surgeries over the last two years.

We've been to Duma @ Hoag, Epstein @ Beth Israel, Spetzler @ Barrow Neuro

and Day, Friedman and Hitzelberger @ House Ear... a pretty good cast of

characters.

Unfortunately, my wife's NF2 was detected while she had the frame on for her

GK. We had no options given to us. They just told me it was the only thing

to do....

For my kids we had opinions for their situations from both radiation and

physical surgery.

We chose Physical based on the current state of both arts and their specific

conditions. I didn't try to imply that it was the correct decision for

all... I was just trying to get folks to get current info on both methods

from folks that do these things for a living. We went to Epstein for

spinal, Spetzler for brain aneurysm, and House Ear for the ANs. Places that

do many of their specialty surgeries each day.

I read the crew notes and have empathy for the newer members, trying to

figure out what to do in their cases. I remember how it was when I was new

and how I regret not stopping the GK on my wife. Maybe we would have still

done GK or Peacock or FSR or even physical surgery, but we'll never had the

chance to take a few extra weeks to evaluate ALL our options. That's what I

regret.

So I will always encourage everyone to get current medical opinions from

doctors on each side of these medical fences.

Sorry if I sounded preachy against radiation, it has it's place. But so

does physical surgery.

Also sorry if I confused anyone.

Mark, Suzanne, Adam and in CA

<<

Our basic view is remove the small ones...zap the inoperable ones.

>>

This is Mark's view exclusively and not an Nf2Crew view by any means (if

such a thing even exists). I disagree with it completely based on my

personal

experience with both microsurgery and radiosurgery. I've had two of each and

KNOW the differences in successful as well as failed outcome by way personal

inner-body

experience.

rosco

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Mark I very much appreciated your candid opinions. Why particularly do you

regret

the gamma knife decision? I have kind of ruled out gama knife, but am leaning

towards peacock. I am much interested in learning any negatives towards

radiosurgery

to help make an intelligent decision.

Marie

Mark and Suzanne wrote:

>

>

> Hey Rosco....

>

> Sorry for using the word OUR. I certainly didn't mean to imply that I

> represented the CREW's view. When I said OUR, I meant my 3 NF2 afflicted

> family members who have had multiple surgeries over the last two years.

>

> We've been to Duma @ Hoag, Epstein @ Beth Israel, Spetzler @ Barrow Neuro

> and Day, Friedman and Hitzelberger @ House Ear... a pretty good cast of

> characters.

>

> Unfortunately, my wife's NF2 was detected while she had the frame on for her

> GK. We had no options given to us. They just told me it was the only thing

> to do....

>

> For my kids we had opinions for their situations from both radiation and

> physical surgery.

>

> We chose Physical based on the current state of both arts and their specific

> conditions. I didn't try to imply that it was the correct decision for

> all... I was just trying to get folks to get current info on both methods

> from folks that do these things for a living. We went to Epstein for

> spinal, Spetzler for brain aneurysm, and House Ear for the ANs. Places that

> do many of their specialty surgeries each day.

>

> I read the crew notes and have empathy for the newer members, trying to

> figure out what to do in their cases. I remember how it was when I was new

> and how I regret not stopping the GK on my wife. Maybe we would have still

> done GK or Peacock or FSR or even physical surgery, but we'll never had the

> chance to take a few extra weeks to evaluate ALL our options. That's what I

> regret.

>

> So I will always encourage everyone to get current medical opinions from

> doctors on each side of these medical fences.

>

> Sorry if I sounded preachy against radiation, it has it's place. But so

> does physical surgery.

>

> Also sorry if I confused anyone.

>

> Mark, Suzanne, Adam and in CA

>

> <<

> Our basic view is remove the small ones...zap the inoperable ones.

> >>

> This is Mark's view exclusively and not an Nf2Crew view by any means

(if

> such a thing even exists). I disagree with it completely based on my

> personal

> experience with both microsurgery and radiosurgery. I've had two of each and

> KNOW the differences in successful as well as failed outcome by way personal

> inner-body

> experience.

> rosco

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