Diagnosing Chiari Malformation

Hello, I'm new to the group. I have a question about diagnosing Chiarri Malformation. I've read on some websites that the cerebellar cerebellar tonsils have to be 3mm below the foraman magnum. Others say 4 or 5mm. Is there a right answer? Is it 3, 4, or 5? Or does this not matter? Thanks so much for the info!

Kmb, there is no definitive answer for this. Different physicians (radiologists too) have different criteria for the size of herniation. But you raise the right question…does it matter? The answer you will get from people and doctors who understand Chiari better is NO! Many people have a cerebellar herniation (can be very large) with no symptoms. The problems arise from the crowding of all the structures at the foramen magnum and also the blockage of CFS flow.

Some doctors believe that Chiari “0” can cause the crowding and CFS blockage with no herniation below the foramen magnum. I think they are right!

We are glad you are here!


My daughter had a 5 mm they called it chiari, a few months later they said it was 4.7mm so it technically wasn’t considered chiari just a low lying tonsil a year later they said it’s not there anymore so she’s cured yet the symptoms are worse now them a year and a half ago so make sure you have a good dr. That knows chiari we’re still struggling to find one , as her symptoms get worse but she’s cured hard to convince them she’s not now

Hi KMB. Welcome to the group. I was diagnosed at the beginning of this year following a car accident last fall and I was at a 1-2 mm When they did my 1st MRI and five months later new mri showed I went to a 5 mm, the symptoms were there from the beginning when I was diagnosed after the accident.

The important thing is to do a video MRI to see how your CSF fluid is flowing and find a doctor that really cares, believes you and understands Chiari, otherwise it’s like hitting a wall every time you visit a doctor and they don’t understand.

This is my first year with full-blown chiari symptoms following my accident. They are now just monitoring me and all I can take is advil and Tylenol. Ive seen so many drs, but Im super happy with my neurosurgeon.

All the best.

Here's a good overview article. http://www.medscape.com/viewarticle/405725_6

The bottom line is, for most MDs, the definition of a Chiari I malformation requires >5mm of cerebellar tonsillar ectopia. If you read through that article(or look through this site), you will note that is a defintion that is of limited clinical utility; hence the need for other diagnostic means, e.g. cine MRI, neurological evaluation, assessment of symptoms over time, etc.

I am also fairly new to the group and have no Chiari diagnosis as of yet. There are some indications and I have nearly all of the symptoms to varying degrees. This is an interesting presentation summary that I stumbled upon recently. The doctor involved has some new perspective to add to the diagnosis of Chiari with <3-5mm herniation and, in some cases, even no herniation at all.


Good luck!

Wow Dr. Trumble is on here … what a blessing … he’s a great man!

When I read the symptoms listed, I was shocked! It was like "this is your life"! I was diagnosed with dysautonomia one year ago, fibromyalgia 13 years ago. I never could understand fibromyalgia (and I couldn't stand all of the "its all in your head" crap people used to throw around). Dysautonomia made more sense. But this explains why I have Dysautonomia. I haven't quite had a chance to look into treatment yet. I suspect it isn't as easy as ABC! But that's how the last 13 years have been! ;) It's just good to have some answer! Somehow, even with an awful pain in my head, it is good to know some answers as to why I've been sick for so long!

I was told that i have a very slight hernaiation, that it is just past the point where it is called Chiari. However my neurologist has not said any definitive degree. I like her and all but i am still deciding between other doctor's who specialize in Chiari fro a second opinion. Especially since my back and neck have seemed to get much worse and very painful i fi even try to stretch.

Beeba, You're not too far from me! I'm in White Marsh. My daughter goes to Towson State! Small world!