Re: Confused by Neurosurgeon

[Guest guest]

Hi, Shell, and Welcome!!

I have good, bad and in between days. I never know from one day to the next

when I wake up how I am going to feel. That is why I am so blessed to have the

family and friends that I have. If I make plans and cannot go, they completely

understand. It's hard, I know. But, you have to come to a place in your life

where you have to accept that this is the way it has to be.

A very wise lady told me that I have to mourn for the life I lost and start

finding a way to live the life I have now. She about blew me away. It was so

true. I can't say I have come that far, yet, but I am working on it.

Take Care!!!

Sheila from Wisconsin

swtshell40@... wrote:This seems to be a popular topis here. I have never

posted before. I have

just been reading for a while. I was recently diagnosed with Chiari I

Malformation (7mm). I have been " complaining " to doctors for about 15 years

with no success. I was morbidly obese then and they all said lose weight.

They said then I wouldn't have this numbness on the entire left side of my

body, or the headaches, or the needles in my cheek and jaw and behind my left

eye. They said that my left side would stop hurting too ... if I could just

lose some weight. Well, I did ... I lost 120 pounds and guess what? All of

those things are still happening ... and more. Here is my question to the

group ...

Do you have days that are good? I have days that are really bad and then

just kinda " normal " days. Like today is a bad day ... lots of aching,

numbness, head pain, neck pain, etc. But yesterday was not. My neurosurgeon

says that is " not typical " for Chiari ... I ask you all ...

Thanks!

Shell

[Guest guest]

Hi Shell!

What you are experiencing is absolutely typical. One nsg called

the symptoms " sinusoidal " meaning that they can slowly get

better and then slowly worse again. For many, though, including

me, sudden changes are normal.

Some of us have had a lot of trouble deciding whether to have

surgery partly because we have good days sometimes.

Whenever I have a good day, I start thinking " whew! what was

THAT? Glad that's over! " then of course I get bad again.

My nsg likened me to a farmer who would not fix his leaky roof.

The farmer couldn't go up there to fix it when it was storming, but

on a sunny day....it didn't leak!

I have decided to go ahead and fix the leaky roof even though the

sun comes out once in a while.

Take care.

Donna in Baltimore

> This seems to be a popular topis here. I have never posted

before. I have

> just been reading for a while. I was recently diagnosed with

Chiari I

> Malformation (7mm). I have been " complaining " to doctors for

about 15 years

> with no success. I was morbidly obese then and they all said

lose weight.

> They said then I wouldn't have this numbness on the entire left

side of my

> body, or the headaches, or the needles in my cheek and jaw

and behind my left

> eye. They said that my left side would stop hurting too ... if I

could just

> lose some weight. Well, I did ... I lost 120 pounds and guess

what? All of

> those things are still happening ... and more. Here is my

question to the

> group ...

>

> Do you have days that are good? I have days that are really

bad and then

> just kinda " normal " days. Like today is a bad day ... lots of

aching,

> numbness, head pain, neck pain, etc. But yesterday was not.

My neurosurgeon

> says that is " not typical " for Chiari ... I ask you all ...

>

> Thanks!

>

> Shell

>

>

>