I'm new at this...

[Guest guest]

My doctor recently did 2 MRI's and told me I have ACM. But then he said it's

borderline. I would think you either have it or you don't. Has anyone ever

of this? I'm frustrated because he hasn't been available to talk about this.

I'm glad to hear about the Dateline programming.

[Guest guest]

I am not new at this, but I share in your confusion. This is the way I make

sense out of it.

Chiari is a condition of loss of cerebral spinal fluid (CSF) flow. It's like

wearing a pair of jeans that are too tight. When the ratio of brain mass and

skull volume are such that the flow is restricted, people present

neurological symptoms.

Now you can take that same body, put it in a pair of jeans that fit properly,

and you have no problems.

The fact is, many people are walking around with low lying tonsils. And the

fact is, that textbooks taught the doctors that read them that " minimal

herniation " is normal. Hence the battle begins.

Dr. Milhorat has redefined the diagnosis for Chiari by determining the ratio

of brain mass to skull volume. Using this ratio is a much better indicator

than the size of the herniation alone. Problem is, this is a new finding and

most doctors don't utilize it yet.

This is where you are at right now. Caught between definitions. Is it

Chiari or not?

So how do you find out if your pants are too tight? The best advice I can

give to you is:

1. Seek out a doctor that defines Chiari beyond the size of the herniation.

Our doctor list on the WACMA site is a good starting point.

2. If you still can't get anyone to listen, ask for a flow study to be done.

Welcome to the group,

Beth