The current definition of Chiari malformation is insufficient to describe the numerous complicated ways that the disorder (and its many possible co-morbidities) can affect patients. Lack of understanding about the condition is surely to blame– even the experts argue amongst themselves about how to best describe the disorder.
The 2017 CSF Think Tank opened a new, desperately needed discussion about the clinical definition of Chiari.
We need to admit that the current definition may help some patients, but leaves many others in the dust. The meeting assessed the clinical definition versus the anatomical and radiological definition, and whether or not “Chiari malformation” is sufficient enough to describe the complex, co-morbid syndromes that are so common in Chiari patients, at all. It may be that “Chiari malformation” may need to branch out into a spectrum of disorders. We can not know for sure, however, until we get the right people in the room to continually talk about this in a serious, and forward-thinking manner.
The meeting took place in Los Angeles, California on April 22, 2017. The morning sessions involved presentations from several Chiari, radiology and other experts to begin to tease out what the problems are. The afternoon was a free-form, round table discussion on the subject to jump start this important venture.
Several projects followed from this meeting, within Bobby Jones CSF and at other organizations like American Syringomyelia Alliance Project and more! This is an important project and will continue.
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– presentation videos available soon –
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CSF does not believe that this one meeting will solve the problem overnight! We do believe that even the simple act of starting to have this difficult and likely uncomfortable conversation is absolutely crucial to improving patient care, health outcomes and overall satisfaction with care. There will be follow-up meetings where the initial discussions are re-hashed until consensus is formed.
We have also launched a brand new project (the Chiari Consensus Project) with the specific goal to better define Chiari malformation and develop improved clinical decision tools to identify where and when decompression surgery will be helpful!
Revised: 09/2019
