surgery

[Guest guest]

My husband had surgery with Dr. Jane Sr. at UVA yesterday,

instead of waiting for Dr. Rosner. He is doing well and says the Chiari

headache is already gone.

[Guest guest]

surgery

> Hi, Amy here, Wanted to say that reading this site and others about

> chiari has helped my sanity. I am scheduled for decompression on Monday

> and have such mixed emotions..... I know that this is probably normal I

> just want to be sure that I am making the right decision,. So many things

> on here are so negative and scary concerning the surgery,,,, I guess my

> big question is If left untreated (no surgery) will it only get worse? I

> do not have a syrinx, however my herneation is 15mm and the reports say

> signifigant crowding of the brain and spinal cord.. any input would be

> appreciated..

>

In reading this post I felt that i needed to respond.. I used to

periodically send an " Unofficial Disclaimer " to the list....Perhaps it is

time for a repeat of this( with some modifications) :

Hi CCI guys...

CCI would like to again welcome all the new members and also thanks to ALL

members for helping to make this the kind of

list that has both support and good information...and one in which members

can feel safe.

But please be aware that..as wonderfully helpful as this list is

for people dealing with the problems associated with chiari...It's

membership is

NOT a

true cross section of the chiari community, at large. For this reason it can

seem somewhat negative to people who are new here.

The list is populated, mainly,by those who are newly diagnosed with ACM,or

related disorders, or suspect that they are dealing with it.....

There are also some " oldies " who hang around to try to

help " newbies " ....and those with on going problems that they are hoping to

find

answers.

Those who have come to the list, had successful surgery, and are

feeling good again.....tend to leave to get on with their lives. This

leaves somewhat of an imbalance on the list and can lead to the perception

of

negative leanings.

It is important that you, the list member, understand this and put what you

read here in this perspective!

Another concept, mentioned to me by a member,deserves mention as well. I

will

paraphrase <g>... She suggested that,maybe I could include a little reminder

that, with the exception of the Dr. B posts, or those of other chiari

" experts " ,

none of us are " professionals " (granted, there may be times when we FEEL

like we

are " professional patients " , but that's a whole 'nother story! <VBG>), and

just

because someone " never heard of that " doesn't mean it isn't so! Even so . .

..

the more knowledgeable of the list, always try to make it clear that they

are

speaking only from either their own experience or from what they have

gleaned

from reliable sources.

I.E. when reading posts here, consider the source... This is important...

Some,

by the " nature of the beast " are more factual than others. Chiari is an area

where there is much " opinion " .... wish that there were more " carved in

stone "

FACTS... This list tries to sort out the good from the bad, AMAP. But some

of it

must be left up to the reader to evaluate.

All best wishes,

Sally R

ACM..Decompression '91...

Hydro..VP shunt..2 revisions

Doing GREAT in Bethlehem,Pa with NO medications

Ps...I would also heartily recommend checking out the links and files

sections

of the CCI Yahoo homepage.

http://health.groups.yahoo.com/group//

There is some good information there....

And also PLEASE visit our Website at

http://www.chiariconnectioninternational.com/, that has done such a

great

job with!

[Guest guest]

Hi Amy and everyone,

Amy. . I'm glad you came to the site for support.  It's hard sometimes for

people including myself who have had previous surgeries for Chiari or who are

searching for a doctor to listen to them to always be positive about our

treatments, because as I'm hoping your surgeon has explained to you, the surgery

does not cure Chiari.  It helps relieve the crowding and increase the spinal

flow and helps to stop the progression of the damage to the nervous system that

this crowding and spinal fluid flow decrease/loss is doing to your system.

I think we all have to make the decision for ourselves and in my case, I am glad

that I made the decision when I did.  That does not mean that I am not having to

make another decision down the road to have something else done. The key is to

have confidence in your surgeon that he has completed enough Chiari

decompressions to understand the disorder and complete the surgery successfully

for you.

Please don't take this negatively.  No one can give you 100% guarantee on the

outcome.  If you are 80-90% better when you are healed up from surgery, that

will be great!  If you are more than that, that will be great too!  And it is

possible! 

Have you reviewed the info on ASAP.org website or CSFinfo.org or

conquerchiari.org websites?  I hope I got those references correct, if not they

are in the links from this website. They have tons of research and info.  Some

patients do well the first go round and unfortunately, some have problems, other

disorders related to Chiari.  So, each patient is different. 

Go into this surgery with a positive attitude, I have always found that that

helps even with the smallest of surgeries.  I wish you the best. 

Take care,