ANs: To operate or not

[Guest guest]

My son, Adam, had surgery in 1995 on a 7mm tumor on his left nerve. The surgery was a success UNTIL the last seconds when they were cleaning up. The blood flow was momentarily interrupted and he lost hearing in that ear.

HEIs policy is to operate on the smallest tumor/best hearing side first in an effort to save hearing. If successful, they would then go immediately after the other to get both when small.

However, we're now in a watch and wait as the other tumor grows.

But it should be noted that Dr. Brackmann has operated on a teenager that insisted on going after the other acoustic after losing hearing from the first surgery. They were able to save the hearing on the other side.

Adam's small 7mm tumor gave him a 70% chance of hearing preservation. We thought those were good odds. But he lost.

One last point -- Brackmann believes it's easier to get a tumor if it sits on the superior portion of the nerve. This would be an important consideration in determining which side to go after first.

Please feel free to ask me any questions

Barbara lin

[Guest guest]

get them out good and then the tumor(s) come right back... see it happen time

and time again. note donna getz child was like 10? came right back.

My son, Adam, had surgery in 1995 on a 7mm tumor on his left nerve. The

> surgery was a success UNTIL the last seconds when they were cleaning up. The

> blood flow was momentarily interrupted and he lost hearing in that ear.

>

> HEIs policy is to operate on the smallest tumor/best hearing side first in an

> effort to save hearing. If successful, they would then go immediately after

> the other to get both when small.

>

> However, we're now in a watch and wait as the other tumor grows.

>

> But it should be noted that Dr. Brackmann has operated on a teenager that

> insisted on going after the other acoustic after losing hearing from the

> first surgery. They were able to save the hearing on the other side.

>

> Adam's small 7mm tumor gave him a 70% chance of hearing preservation. We

> thought those were good odds. But he lost.

>

> One last point -- Brackmann believes it's easier to get a tumor if it sits on

> the superior portion of the nerve. This would be an important consideration

> in determining which side to go after first.

>

> Please feel free to ask me any questions

>

> Barbara lin

>

[Guest guest]

Hello; Barb, when you say," superior portion", do you mean the top as viewed from horizontal, or the front? Thanks for your post!! Russ

cinnyd@... wrote:

get them out good and then the tumor(s) come right back... see it happen time and time again. note donna getz child was like 10? came right back. My son, Adam, had surgery in 1995 on a 7mm tumor on his left nerve. The > surgery was a success UNTIL the last seconds when they were cleaning up. The > blood flow was momentarily interrupted and he lost hearing in that ear.> > HEIs policy is to operate on the smallest tumor/best hearing side first in an > effort to save hearing. If successful, they would then go immediately after > the other to get both when small.> > However, we're now in a watch and wait as the other tumor grows.> > But it should be noted that Dr. Brackmann has operated on a teenager that > insisted on going after the other acoustic after losing hearing from the > first surgery. They were able to save the hearing on the other side.> > Adam's small 7mm tumor gave him a 70% chance of hearing preservation. We > thought those were good odds. But he lost.> > One last point -- Brackmann believes it's easier to get a tumor if it sits on > the superior portion of the nerve. This would be an important consideration > in determining which side to go after first.> > Please feel free to ask me any questions> > Barbara lin>

[Guest guest]

The tumors that are regrowing...possibly from not getting all of the tumor in the first place??? And I am sure with some AN's, depending on their position, it can be possible not to get it all.

Carol

Re: ANs: To operate or not

> get them out good and then the tumor(s) come right back... see it happen time > and time again. note donna getz child was like 10? came right back.

[Guest guest]

I was told "got it all" at first, but 10 yrs later they were back, Carol. I read somewhere, if you dont have a regrowth in 10-15 yrs, you wont get one. I wonder if that's true?! I was close I guess, if so. Then again, I don't really do the yearly MRI thing most of you do, so they could've shown earlier then 10 years. That's just when I first saw them.

Jennette

Re: ANs: To operate or not

> get them out good and then the tumor(s) come right back... see it happen time > and time again. note donna getz child was like 10? came right back.

[Guest guest]

Sure, Carol, anything's possible. But if it happens that often, then

why would they be promoting this approach?

Since your post made me think more about this:

What I've been told or seen discussed on the Crew--or maybe both, is

that even with very small tumors, surgeons don't know what they are dealing

with until they get in there. Donna Getz posted this to the Crew

awhile back. It is about when the House team tried to save the hearing

on the first side for : "She had surgery to remove her right

AN at the age of 10. She did lose the hearing during the surgery

due to the fact that as it happened there was a second tumor (hidden behind

the AN on the MRIs) and the two of them had made a "nerve sandwich" with

the acoustic nerve."

So we're all left wondering: how can they possibly use a general rationale

when each individual is different... and when they do not know what they

are really dealing with until they have access to the surgery site?

Statistical inference is based on using as much information as possible

to increase the likelihood of a successful outcome. If someone really

knows what they are doing, then they point to individual circumstances

that increase the chance for long-term well-being. A general principle

is only as good as the average experience... and it still does not seem

that the average has lived up to the expectation. Or maybe it's just

that the below average experiences drastically alter both the short-term

and long-term well-being of individuals? That may be what stings

us the most, as a close-knit group.

Not to mention, do all surgeons take into account the prevalence of

post-op debilitating headaches that are rather common, at least for a little

while... or the effects of anesthesia... risks of swelling, increased cranial

pressure (perhaps to the point of needing a shunt... so another surgery

to put that in), allergies, and infections... the effects that steroids

have... loss of balance... vision problems... etc, etc, when advising surgery

based on a theory? These are just some of the issues that some parents

may consider asking about when a surgeon is suggesting surgery as a way

to prevent losses. Many people have pointed out that most surgeons

will not disclose much of this unless asked about it directly. I

think it is misleading to present the pros and not the cons when people

are trying to make the decision that is best for them. Maybe they

do present the cons and it just doesn't make it into what we share with

the Crew? I understand the need to focus on the positive once we

choose a direction for ourselves, but for the sake of us being here for

each other, this seems like information we should be sharing if our surgeons

do present it as part of the package. I fear they do not, but hope

I am wrong.

NF2 is an individual thing and because we all care so much about one

another, it seems reasonable that we demand surgeons see us as individuals

and not a test population for their theories. That must be one of

my main concerns about all this. Hugs,

CarolW wrote:

The

tumors that are regrowing...possibly from not getting all of the

tumor in the first place??? And I am sure with some AN's, depending

on their position, it can be possible not to get it all.Carol

Re: ANs: To operate

or not > get them out good

and then the tumor(s) come right back... see it happen time

> and time again. note donna getz

child was like 10? came right back.

[Guest guest]

Oh another NON CONFORMIST ! We OCCASIONAL MRI people need our own badge to wear. We need a slogan for it . ; -)

M

Then again, I don't really do the yearly MRI thing most of you do, .

Jennette

[Guest guest]

You realise I'm having these mails printed in HARD COVER editions don't you ?

The JAMIE FILES ;-) filling a library near you ...................... M...........................

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

From: L. Przybysz

[Guest guest]

"MRI OR BUST!"

hee hee

Carol

Re: ANs: To operate or not

Oh another NON CONFORMIST ! We OCCASIONAL MRI people need our own badge to wear. We need a slogan for it . ; -)

M

Then again, I don't really do the yearly MRI thing most of you do, .

Jennette

[Guest guest]

Hi; I just hope docs tell when they don't get it all out. Russ

Jennette Braaten wrote:

I was told "got it all" at first, but 10 yrs later they were back, Carol. I read somewhere, if you dont have a regrowth in 10-15 yrs, you wont get one. I wonder if that's true?! I was close I guess, if so. Then again, I don't really do the yearly MRI thing most of you do, so they could've shown earlier then 10 years. That's just when I first saw them.

Jennette

Re: ANs: To operate or not

> get them out good and then the tumor(s) come right back... see it happen time > and time again. note donna getz child was like 10? came right back.

[Guest guest]

Hey 'M' and 'J'; Remember the rock group, "The Guess Who"? (smile) Russ

Marcus wrote:

Oh another NON CONFORMIST ! We OCCASIONAL MRI people need our own badge to wear. We need a slogan for it . ; -)

M

Then again, I don't really do the yearly MRI thing most of you do, .

Jennette

[Guest guest]

Carol; right now 'BUST' seems more desirable ; Russ (still a human)

CarolW wrote:

"MRI OR BUST!"

hee hee

Carol

Re: ANs: To operate or not

Oh another NON CONFORMIST ! We OCCASIONAL MRI people need our own badge to wear. We need a slogan for it . ; -)

M

Then again, I don't really do the yearly MRI thing most of you do, .

Jennette

[Guest guest]

My complaint is that there was such a focus on hearing loss, but never brought out that the fight to maintain hearing could have consequences; such as increased chance of damage to facial nerve, vision and balance loss. These last two are really serious things to deal with, particularly in limiting your quality of life; I agree with that ALL needs to be considered. marie

Re: ANs: To operate or not > get them out good and then the tumor(s) come right back... see it happen time > and time again. note donna getz child was like 10? came right back.

[Guest guest]

Hello all; My ENT and Neurosurgeon both told me when they have access to the surgery site, they still don't always have good rationale for removal, even with vision of the tumor(s) and will not necessarily remove all or even some of a tumor if there is usable hearing on one side. In short, all may look easy enough but there are many variables and things unpredictable. Thus many opt for the watch and wait stance. They only recommended a removal of part of the bone surrounding my 2 ANs (middle fossa canal tumor decompression) to alleviate some the the pressure exerted on the nerves as they are encased in solid bone. I felt this may encourage further growth, but they said no, as ANs only grow inward. I thought, huh? Good day, ALL!

Russ

Marie Drew wrote:

My complaint is that there was such a focus on hearing loss, but never brought out that the fight to maintain hearing could have consequences; such as increased chance of damage to facial nerve, vision and balance loss. These last two are really serious things to deal with, particularly in limiting your quality of life; I agree with that ALL needs to be considered. marie

Re: ANs: To operate or not > get them out good and then the tumor(s) come right back... see it happen time > and time again. note donna getz child was like 10? came right back.

[Guest guest]

BANG !!!!!!!!

okokok I confess I have one scheduled for this month. And I really truly wooly will go this time, and report the nasty gory details LIVE on AIM ! ( a bit like that new chamber in the GREAT PYRAMID show ;-))))))))

" We now cross to M's MRI's LIVE ! " right after these messages ........................

Re: ANs: To operate or not

Oh another NON CONFORMIST ! We OCCASIONAL MRI people need our own badge to wear. We need a slogan for it . ; -)

M

Then again, I don't really do the yearly MRI thing most of you do, .

Jennette

[Guest guest]

I just had one, just waiting for the report. (no fingernails left)

Mikey

Re: ANs: To operate or not

Oh another NON CONFORMIST ! We OCCASIONAL MRI people need our own badge to wear. We need a slogan for it . ; -)

M

Then again, I don't really do the yearly MRI thing most of you do, .

Jennette

[Guest guest]

Antoinette,

Who are they going to and where? What type of radiation? At present, I am enjoying the view of putting my head in the sand.

Blessings,

Re: ANs: To operate or not

Have you considered some radiation treatment "after" the surgery. I know now several person here who had the acoustic neuroma surgery immediatly followed by a scant radiation treatment. They started doing this several years ago and there is no regrowth, no facial nerve weakness, and even some hearing left. antoinette & Larry Orr wrote: Hi Russ, My Drs. (Brackmann & Hitzelberger) told me soon after surgery that they were unable to remove the tumor completely. They said if they had removed it completely I would have lost my facial nerve. They also told me that it will continue then to grow. My other side was a complete removal. Blessings,-----