One of the more popular articles on the website is Surgical Technique Minimizes Trauma For Children, from the newsletter's very first issue.  The article reports on a surgical technique used by Dr. Jorge Lazareff at UCLA, which involves only removing the cerebellar tonsils and not removing bone.  Since it has been a couple of years since the article was posted, and the study on which the article is based was published in 2002, I have received quite a few emails from parents wondering if there has been any follow-up.

I recently sent Dr. Lazareff an email about this (which he replied to the same day, he is a class guy and extremely dedicated and passionate) and he wanted everyone to know the following:

1) All the patients from the original study are still doing very well
2) He is still using the tonsillectomy technique
3) He is planning a paper on the histology (microscopic structure) of the cerebellar tonsils, a paper on syringomyelia, and a paper on acquired Chiari will be published soon
4) He remains committed to gaining a better understanding of what Chiari is, its many symptoms, and how it can be treated

So there you have it, I really do try to respond to reader requests.  Thanks, Doc!

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Since we're on the subject of updates, I want to revisit something I wrote about awhile ago.  Chiari would benefit greatly from having a well known spokesperson.  Someone who can get on talk shows and news programs, get interviewed in magazines and newspapers, someone who people would pay attention to.  This person could doesn't have to an actor or actress, or even in the entertainment business (although that would be fine).  They could be a professional athlete, a high-profile business leader, or a politician.  Anyone who is well known enough to already have a leg up when it comes to being heard.

Odds are that person is out there.  If Chiari affects about 1 in 1,000 people, it is almost certain that some actor, athlete, singer, or politician has a mom, dad, child, or sibling who struggles with Chiari.  We just have to find who that person is. 

If you know of anyone like this with a connection to Chiari, or even someone famous who might just be interested in taking up the cause, please let me know at director@conquerchiari.org

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Finally, I'd like to start a regular column in the newsletter for parents of Chiari kids.  If anyone is a Chiari parent and is interested in writing a monthly column, please let me know.  However, before you respond, please think about whether you really have the time to contribute something each and every month.  I'm looking for someone willing to share some of their personal experiences (not so much the medical, rather the impact on family life), maybe give some advice, and do it in an upbeat, even humorous way.  If you think it's a good idea, and you think it's right up your alley, please send me an email (and a writing sample if you have one).

-- Rick Labuda

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