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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.
Physicians with extensive Chiari experience, please contact me at (208) 249-8893 if you would like me to post your contact information on this page.
West Coast Neurosurgeons Experienced With Chiari Malformation
After reading voluminous web sites about CM/SM and seeing repeated mention of the names Dr. Milhorat and Dr. Bolgnese in New York, we started wondering if New York had a lock on Chiari surgery expertise. That’s simply not the case. I am sure that Drs. M & B are great at what they do, but so are many other neurosurgeons across the country.
Here is some general info on West Coast doctors that deal with Chiari Malformation / Syringomyelia (CM/SM) on a regular basis. I’ll add more information as time allows and as I get new information.
Dr. Leslie D. Cahan
Kaiser Permanente, Los Angeles (Sunset)
Dr. Cahan does all of Kaiser’s pediatric Chiari Malformation surgeries. We have met him personally and we are currently scheduled with him for Jaden’s surgery in mid April, but we are hoping to move that appointment up. Obviously, we feel very confident in Dr. Cahan’s expertise in decompression surgeries. His skill as a surgeon was verified by a non-Kaiser doctor we consulted for a second opinion (Dr. McComb, below).
(Update: We used Dr. Cahan for Jaden’s surgery and he did an AWESOME job, by the grace of God!)
Dr. Soohoo Choi
Kaiser Permanente, Anaheim (Lakeview)
We were referred to Dr. Choi by Dr. Cahan to get an intra-Kaiser second opinion. We met him, and although we would probably feel comfortable with him doing the surgery, he said that the Sunset facility (where Dr. Cahan practices) has a pediatric ICU, while the Lakeview facility does not. He also told us that he does more adults, while Dr. Cahan generally handles pediatric patients. For these reasons, we have scheduled the surgery with Dr. Cahan. We later found out that Dr. McComb (below) trained Dr. Choi and has a lot of confidence in his abilities.
Dr. J. Gordon McComb
Hollywood Presbyterian Medical Center, Los Angeles
Children’s Hospital, Los Angeles
We saw Dr. McComb to get a second opinion outside of the Kaiser system. He was extremely thorough in explaining things us and was very knowledgeable about Chiari Malformation and its unique symptoms. For non-Kaiser patients, I would highly recommend a consultation with him.
Dr. Ulrich Batzdorf
UCLA Neurosurgery
This recommendation came through a CM/SM patient who called me with a good report on Dr. Batzdorf. She also recommended Dr. Lazareff for pedes patients.
Dr. Jorge A. Lazareff
UCLA Neurosuergy
I received positive feedback on Dr. Lazareff for his treatment of pedes Chiari cases.
Dr. Richard Ellenbogen
University of Washington Spine Center
I recieved positive feedback on Dr. Ellenbogen for those nearest to the Seattle area.
Kaiser Permanente
My wife and I have had Kaiser insurance for our entire marriage of fifteen years and have been extremely impressed with the quality of care through four pregnancies (one critical), a bizarre but urgent bacterial infection in the neck of our youngest, and now with Chiari treatment of our son Jaden. We hear a lot of people bad-mouth HMOs and even Kaiser specifically, but we hear horrible stories about long waits for other HMOs and private plans. My wife's an R.N. and has a high opinion of Kaiser as well. I could go on, but I'd sound like a commercial; so suffice to say that you can find great doctors and neurosurgeons in the Kaiser system.
Please note that I am simply reporting my personal experiences. I have heard of others having difficulties within the Kaiser system as adults trying to get treatment for Chiari.
We were referred to Dr. Cahan in the Sunset, Los Angeles facility. He turned out to be a very experienced neurosurgeon, though maybe slightly lacking in bedside manner, and does several pediatric decompression surgeries each month. He suggested that if we wanted a second opinion, we could see Dr. Choi at the Kaiser Lakeview facility prior to scheduling surgery. (I recently found out that some adults may have had difficulty getting appropriate Chiari treatment from Dr. Choi.)
Here's where it gets interesting. A neurosurgeon in Houston (a friend of a friend of a friend referral) recommended a Dr. McComb in Los Angeles for pediatric Chiari patients. Since we wanted a second opinion outside of the Kaiser system anyway, we tried to schedule an appointment with him...only to find that he was booked into late April! Diane called again the next day, however, and voila...he had an opening due to a cancelled surgery that afternoon. We dropped everything and made it to his office within a couple of hours.
Several prayers were answered THAT day!
We felt MUCH better after talking to him extensively about the surgery. As it turned out, he said that he trained Dr. Choi, and he had high recommendations for both Dr. Cahan and Dr. Choi.
We did meet Dr. Choi, but scheduled Jaden's surgery with Dr. Cahan on April 12. We called nearly every day until there was a cancellation allowing us to get moved up to April 6.
Update: The surgery was an amazing success. As of August 29, 2006, Jaden is symptom-free. His follow-up MRI about a year after the initial surgery showed the syrinxes almost completely gone!
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