Hi and welcome to the Chiari forum.
I am so sorry your little one is having such a difficult time.....I can not say I understand as I have not had my child sick with this condition....
May I ask where you are? Your profile does not state where you are located ...I may be able to help with names of Drs for you to research......
I am sorry we do not have a listing for your state, is there another state you can travel to with your INS? Many of us travel out of state to get to a true Chiari specialist...and you will want one that also deals with pediatrics.
I know of one Dr in IL that used to treat only peds but now also treats adults....Dr Frim....here is a listing for that state.
Dr. Todd Alexander
1235 North Mulford Rd.
Rockford, IL 61107-0077
Dr. Merle Diamond
Diamond Headache Clinic
Dr. Mahmoud Nagib
913 East 26th Street
305 Piper Building
Minneapolis, Minnesota 55407
Dr Nicholas M. Wetjen, M.D.
Mayo - Rochester, MN
Neurosurgery & Pediatric and Adolescent Medicine
Keep in mind you do have to research these Drs as the list is not a referral nor an endorsement of them being a true Chiari specialist....members here have been to, and treated by these Drs and liked them....it does not mean they are right for you or your daughter.
I know you do not want to go far but NY or FL are other options too.
American Syringomyelia & Chiari Alliance Project may be a resource to reach out to see if they can point you in the right direction.
Medical professional organizations typically offer physician finder tools where you can search using your zip code. Maybe check out American Board of Neurological Surgery, American Society of Pediatric Neurosurgeons , American Academy of Neurology
If you live near a university, their medical center will list neurosurgical faculty and staff.
As mentioned, it is really important to your research and find the right fit for you. Look up reviews, ask around, interview physicians, and visit facilities. Also ask lots of questions!
Best of luck to you and your little one. Hope this is helpful.