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Chiari Malformation Community
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How do I access the National Chiari Specialist Registry? SOS!!!

Hi all,
I was incredibly blessed about a year ago to join this forum and to find a TRUE Chiari Specialist who did my decompression surgery in June and gave me my life back. I am now in touch with a young, 21 year old girl who posted a few questions about her upcoming decompression surgery scheduled for the end of March on a Facebook forum. In messaging back and forth with her I feel quite certain her surgeon is not a Chiari Specialist though she insists google tells her (as well as the doctors website) that he is (she has not given me his name). Can someone please remind me...how do we access this registry so I can at least share this info with this young lady?? I am truly scared for her. Thank you!!
1 Responses
620923 tn?1452915648
COMMUNITY LEADER
I do not have a link to such a registry....we do have a list of Drs members here have added to the list....I know there are many Drs that claim they are Chiari specialists, but do not do research or  look for more issues that could be going/coming along with Chiari.

I have not had time to repost a new thread on the  Drs list we compiled here....but if you tell me the sate I may be able to post that here....or if out of US, let me know where and I can add that link.

Keep in mind this list may contain Drs that are not true Chiari specialists  the list is a starting place to begin researching Drs and was compiled by the members here of Drs that they have been to, treated by and liked.
2 Comments
Thanks so much for the reply! I have no idea how to go about doing this but we need to somehow create a webpage where people can go to easily access a list of true specialists. Lives literally depend on this. I know I'm preaching to the choir here but it just shouldn't be this hard. It's high time society takes Chiari much more seriously. Ok...end rant. We'll keep pressing forward! Thank you again for the info.
I know other groups also have their lists, and again not all on the lists are true Chiari specialists....so we created our own here.....it was to help others with Chiari research Drs......as you mentioned some advertise they are Chiari specialists when they are not.
We can't believe everything that is posted and why I say to use the list to research and find the right Dr for you. Not everyone will be comfortable with the same Dr...and the Dr should gain not only your confidence in his knowledge and abilities but you should feel comfortable as well. This takes meeting a few Drs and interviewing them to find that right Dr.....and it is well worth the time and efforts.
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