It's been a long time since I updated this site about Jaden's ACM (Arnold Chiari Malformation). I usually call it CM/SM (Chiari Malformation with Syringomyelia) because that's a little more descriptive.

He was diagnosed in early 2004 after having a severe case of "drop-foot" (meaning he limped because his ankle didn't have the strength to pick up one foot). He actually had to pick one leg up higher than the other while walking to compensate. We spent a few doctor appointments trying to figure out the cause of the condition, and thankfully, the Kaiser Permanente doctors in California were on the ball and suggested further investigation.

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There used to be a real dearth of information about treating Chiari Malformation / Syringomyelia (CM/SM) in any place other than New York. Hopefully that will change.

I'm compiling information on the treatment of Chiari out here on the Left Coast, since much of the Internet information seems to be concentrated on the Big Apple. Yes, there are highly experienced neurosurgeons in the Golden State, and no, you don't need to get on a plane to New York to get the best treatment. At the end of this article you'll find a list of neurosurgeons on the West Coast who are very experienced with Chiari surgeries.

Please contact me if you have personal experience (good or bad, regarding neurosurgeons or health plans) that you would like to share with me for possible publication on this site. The goal, of course, is to help patients and parents of patients to be better informed prior to making life-altering decisions.

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Hmmm, where to start? Well, it was a pretty shocking moment to be told my seven year old son has a potentially life-altering condition. The condition is called Chiari Malformation with Syringomyelia (a.k.a. CM/SM). It is a malformation (from birth) of the cerebellum (the lower base of the brain stem) wherein said cerebellum projects a little too far into the top of the neck. This puts excess pressure on the spinal chord, causing the flow of spinal fluid to become obstructed and diverted into odd places.

My lovely wife thinks I'm getting too technical here. (Back off, honey, I don't see you writing anything for this site...yet! :-)

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