There is an organization called the Bobby jones chiari & syringomyelia foundation. They do a lot of research and r well connected with various medical doctors, neurosurgeons, etc. great resources! look them up on YouTube. They post a lot of informational helpful stuff. I also know of a few top surgeons on the east coast who specialize in syrinx of brain and spinal cord, syringomyelia, chiari and EDS. I'm about to go see Dr. Fraser C. Henderson Sr. for my atlantoaxial instability and chiari malformation and I did a ton of research before deciding on which neurosurgeons to go consult with.
There is another doctor, Dr. Paulo Bolognese in New Jersey or Rhode Island (sorry I can't recall exactly rn because he has worked in both areas) but anyway, the hospital group dr. Bolognese works with now specializes in only these exact brain/brainstem/ CSF/ spinal cord syringes, syringomyelia and syringobilbia, as well as all the usual associated comorbidities too. there is info about him and that hospital group on YouTube too. I've also heard of a Dr. Myles Koby that is well known in this field as well. hope these names help! and trust me- if you have the attention span for it, you can get excellent academic, scientific, medical information on YouTube. since it is such an underappreciated area of Neuro medicine, it's not like you'll have to sift through endless info and be forced to choose semi blindly. You can get names, contact info, and other very specific helpful info from medical doctors & other professionals on the circuit by watching a few of these doctors speak