Re:20% surgerys not working

[Guest guest]

I have to say that I agree with this figure of 20%

not working.... and the figure may even be

higher then that, I don't know!!

This is my opinion only!!

Dr. Frim himself told me I was a Chiari failure!

I had my first decompression back in 1987, and although I had the surgery

to slow the progression, I would hardly call it a success either.

I never was able to return to work!! And how do we really know that

it slowed my progression anyway... we are really guessing with that

as well!!

and Terry wrote:

I have only heard of possibly one or two surgerys

that were not ,

considered successful.

Again, I have to disagree... I have been on

this list for over three years and have seen more then two surgeries that

were not successful!! I had another surgery this past May and then

in July.... I am still not doing much better!! I know of several

people (meaning more then 10) that are not doing any better.....

so I guess it just depends on where you are sitting and where you are looking!!

Smile!! Hugs to all... Robin

Hello,

I am really curious about where you got this information about 20% of

the surgerys not working.

That is certainly news to me.

No maybe everyone does not lose all of their symptoms, but that's

usually due to the amount of time passed , in waiting too long to get

the surgery.

Many of us could be negative and say the surgery did not work, but we

can also be educated and say how the surgery stopped symptoms from

progressing, and even saved some lives literally.

It saved my fiancee' from permanent paralysis and retardation.

She still has to have a shunt put in next month, but that doesn't mean

the first surgery didn't save her life , which it did.

And Dr. Frim even told us in their ER, when we saw him , that first we

have to save her. Knowing that the surgery possibly wouldn't cure

every little thing.

But it did work.

I have only heard of possibly one or two surgerys that were not ,

considered successful.

And I don't believe the NSG was experienced with Chairi in either case.

We have even met an NSG that is known for being good at the surgery,

but knew very little about the follow up treatment, when symptoms

returned and he could see anything wrong in MRIs, same thing with

another excellent Chairi Dr.

After about a year of suffering and seizures, we found someone willing

to dig deeper, and test the intracranial pressure. (Dr. Frim once again)

Now there will be a shunt installed, that will be valved exactly as the

,

6 day lumbar drain was, (which also eliminated every symptom I might

add ).

20% percent chance of not working? news to us.

Terry

=======================================================================

======

"gary a. morningstar" wrote:

original article:/group/chiari/?start=30461

> I am in South Carolina. I have been diagnosed with Chiari by Dr.

> Rosner. He has not called yet to schedule surgery. How many of you are

> or have been seen by Dr. Rosner? I am fighting this surgery as I

> understand it only works 80% of ther time. I experienced what I call "

> I crashed" in 1995. I could see everything around me but I could not

> process information. I saw a number of doctors(in the Washington D. C.

> area) but they told my wife there was nothing wrong with me and doped

> me up. I knew there was something wrong but no one would listen. I

kept

> saying my brain felt like it was too big for my skull. I have hurt for

> five years and I want this gone of course. I have been reading this

> site the last feww days after Detloff gave me this site in an

> e-mail. My wife and I were very impressed with Dr. Rosner the two

> visits I had while he was still in Charlotte. I am concerned about the

> 20% the surgery does not work for. A. Morningstar in South

Carolina

>

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[Guest guest]

I have to agree with Robin. Rick's nsg had said that ALL of his

decompressions were successful. We do not feel that Rick's was, as his

symptoms have multiplied, but the nsg continues to insist that he is

decompressed. That may be true, but maybe we could've used some

explanation beforehand about that definition " successful. "

However, I remember reading a site (thought it was the Duke University

site, but not sure) that said that 70% of decompression patients had at

least some improvement. My mind translated that to be: 70% successful,

30% not.

I guess it all boils down to your definition of successful!

Wendi -- New Mexico. Husband, Rick, w/ACM1, syringomyelia, cervical

stenosis and lumbar stenosis. Decompressed 7/98 with C1 & C2

laminectomies.

" robin c. " wrote:

original article:/group/chiari/?start=30549

> I have to say that I agree with this figure of 20% not working....

and

> the figure may even be higher then that, I don't know!!

>

> This is my opinion only!!

>

> Dr. Frim himself told me I was a Chiari failure! I had my first

> decompression back in 1987, and although I had the surgery to slow the

> progression, I would hardly call it a success either. I never was

able

> to return to work!! And how do we really know that it slowed my

> progression anyway... we are really guessing with that as well!!

>

> and Terry wrote:

>

> > I have only heard of possibly one or two surgerys that were not ,

> > considered successful.

>

> Again, I have to disagree... I have been on this list for over three

> years and have seen more then two surgeries that were not successful!!

> I had another surgery this past May and then in July.... I am still

not

> doing much better!! I know of several people (meaning more then 10)

> that are not doing any better..... so I guess it just depends on

where

> you are sitting and where you are looking!! Smile!! Hugs to all...

> Robin

>

> >

> >

> > Hello,

>

> I am really curious about where you got this information about 20%

of

> the surgerys not working.

>

> That is certainly news to me.

>

> No maybe everyone does not lose all of their symptoms, but that's

> usually due to the amount of time passed , in waiting too long to

get

> the surgery.

>

> Many of us could be negative and say the surgery did not work, but

we

> can also be educated and say how the surgery stopped symptoms from

> progressing, and even saved some lives literally.

>

> It saved my fiancee' from permanent paralysis and retardation.

> She still has to have a shunt put in next month, but that doesn't

mean

> the first surgery didn't save her life , which it did.

>

> And Dr. Frim even told us in their ER, when we saw him , that first

we

> have to save her. Knowing that the surgery possibly wouldn't cure

> every little thing.

>

> But it did work.

>

> I have only heard of possibly one or two surgerys that were not ,

> considered successful.

>

> And I don't believe the NSG was experienced with Chairi in either

case.

>

> We have even met an NSG that is known for being good at the surgery,

> but knew very little about the follow up treatment, when symptoms

> returned and he could see anything wrong in MRIs, same thing with

> another excellent Chairi Dr.

>

> After about a year of suffering and seizures, we found someone

willing

> to dig deeper, and test the intracranial pressure. (Dr. Frim once

again)

>

> Now there will be a shunt installed, that will be valved exactly as

the

> ,

> 6 day lumbar drain was, (which also eliminated every symptom I might

> add ).

>

> 20% percent chance of not working? news to us.

>

> Terry

> ===================================================================

====

> ======

>

> " gary a. morningstar " wrote:

> original article:/group/chiari/?start=30461

> > I am in South Carolina. I have been diagnosed with Chiari by Dr.

> > Rosner. He has not called yet to schedule surgery. How many of

you are

> > or have been seen by Dr. Rosner? I am fighting this surgery as I

> > understand it only works 80% of ther time. I experienced what I

call "

> > I crashed " in 1995. I could see everything around me but I could

not

> > process information. I saw a number of doctors(in the Washington

D. C.

> > area) but they told my wife there was nothing wrong with me and

doped

> > me up. I knew there was something wrong but no one would listen. I

> kept

> > saying my brain felt like it was too big for my skull. I have

hurt for

> > five years and I want this gone of course. I have been reading

this

> > site the last feww days after Detloff gave me this site in

an

> > e-mail. My wife and I were very impressed with Dr. Rosner the two

> > visits I had while he was still in Charlotte. I am concerned

about the

> > 20% the surgery does not work for. A. Morningstar in South

> Carolina

> >

>

> > -------------------------------------------------------------------

----

> > WACMA Site: http://www.pressenter.com/~wacma

> > Your Personal support group member page:

> > http://www.eGroups.com/group/chiari/ **Avoid List Congestion:

> > Unsubscribe from this list: mailto:chiari-unsubscribeegroups

> > Contact list mgmt: mailto:chiari-owneregroups

[Guest guest]

" Rick's nsg had said that ALL of his

> decompressions were successful. We do not feel that Rick's was, as

his

> symptoms have multiplied, but the nsg continues to insist that he is

> decompressed. That may be true, but maybe we could've used some

> explanation beforehand about that definition " successful. "

>

I thought it meant you were not destined to the end results of an

impressed brainstem, or hydrocephalous, ie not being able to breathe

enough to sustain life, paralysis, retardation?

We didn't feel was " cured " either after her surgery.

We only expected that instead of dieing or being retarded/paralyzed,

that she would not be . So we are still happy with our definition of

what was a sucess. Can be testified to by a few docs that saw

prior to surgery.

I guess I just am going by the " did you survive, without dieing from

chairi " point of view.

I know several people that would have us believe that 's surgery

was not a success, as well as other surgerys.

You know the ones, that the patient feels no improvements , yet they

are still alive, and can even still possibly walk, and breathe.

The way I understood the progression I saw, and have read about in the

articles on the progression of hydrocephalous, which is what the

average compressed chairi patient has technically,

I have to say that , knowing about all the members who have not

progressed, after surgery with the results of prolonged hydrocephalous,

which would , or will most likely show up in those that choose not to

have surgery, sooner or later.

I see things differently. As a work that is not yet completed.Rather

than a surgery that did not work. Which I know some don't and didn't.

I don't mind if we disagree, I just see things as an ongoing work as I

said, and very scientifically, as well as mechanically.And positivly,

most of all.

If I would have believed that 20% thing I would have never risked

losing all we had , and four Dr.s, and almost force down Dr.

Frim's throat at times, for over a year.

Sincerely,

Terry