Hi again, new friends! Sorry I'm flooding the site with my questions, but I'm so relieved at being in contact with people who have been there, done that!
I keep reading about the importance of finding a "Chiari specialist" to do decompression surgery. But I thought there was no such animal as a "Chiari specialist." I thought that Chiari wasn't a recognized specialty or sub-specialty. Soooooo . . . I'm assuming that when people say "Chiari specialist" they are talking about a neurosurgeon (in our case, a pediatric neurosurgeon) who has performed a lot of successful surgeries for Chiari -- is that right? So, how does one determine what constitutes a "specialist?" Does it mean someone who sees Chiarians exclusively? Or one who has performed x-number of successful decompressions?
I'm confused about how to determine if our pediatric neurosurgeon qualifies as a "Chiari specialist?"
Thanks for any help y'all can give me!
-- Michele
You are right to be cautious. there is no national certification for a "Chiari specialist." It is essentially a title given to a neurosurgeon with particular interest in Chiaris.
Ideally, they have a separate Chiari clinic. There are decent volumes of patients with good outcomes.
You talk to the surgeon and ask their experience. When you call, ask the front desk how many Chiari patients they are seeing that week. Perhaps spell out the diagnosis and ask them what it is(that may not help with a new front desk person but I have had a number of patients tell me that the original neurosurgeon to whom they went didn't have anyone answering phones who could pronounce Chiari).
Virtually every neurosurgeon will have a web site. If a Chiari a listed diagnosis they treat? If so, is there a separate page on their web site describing Chiari issues and treatment? Web sites like this help patients describe their own experiences and share experience with various MDs.
Thank you! That is very helpful!
We Googled chiari specialists in our area…and we found Dr. Trumble, who I see replied to your comment!! I emailed him and he emailed me back within a few hours which I thought was unheard of…he spent a lot of time with us answering all of our questions and explaining why she had the symptoms she had. The 1st pediatric neurosurgeon we saw had no idea?? A 2nd or Even 3rd opinion never hurts and thank God I didn’t stop after seeing the first one. My family is very thankful to have found him.
New York chiari institute, has several chiari specialist
In NC there is one just for adults
Dr michael rosner neurosurgeon in Hendersonville nc