07/25/2026
from another amazing EDS Advocate:
New Name and Website for Dr. Bolognese
As I’ve shared about my recent craniocervical fusion revision with extension to T3, I’ve received quite a few questions about my neurosurgeon, Dr. Paolo Bolognese, in New York. I’m excited to share that he has launched a very comprehensive new website and has renamed his practice from Chiari EDS Center to The Center for Neuro-EDS and Craniospinal Disorders.
When it comes to neurosurgeons with extensive experience treating the complex neurological conditions that can accompany Ehlers-Danlos Syndrome, our options remain very limited. So I wanted to make sure everyone in the group was aware of this change and knew about the new website.
Dr. Bolognese is the only EDS-specializing neurosurgeon I’m personally aware of who evaluates and surgically treats all of the following conditions. Having one doctor able to evaluate and treat all these issues was especially helpful in my case, as I’ve been diagnosed with each of them (except a syrinx) and have undergone surgery for several.
Areas of special expertise:
Craniocervical instability, Chiari 1 Malformation, Syringomyelia, Tethered cord syndrome, Eagle syndrome, Intracranial hypertension, Intracranial hypotension, Cerebral venous outflow disorders and CSF Pressure disorders.
Homepage:
👉 https://neuro-eds.com
New Patient Information:
This page provides a thorough overview of the intake process, insurance, evaluations, diagnostic testing, and the overall clinical pathway for patient care.
👉 https://neuro-eds.com/patients/
Publications:
Many of you may also find the publications page helpful. It includes Dr. Bolognese’s recent study on craniocervical instability outlining his surgical screening protocols, including Invasive Cervical Traction (ICT), along with information about the Condylar Method he pioneered, which utilizes minimal hardware.
👉 https://neuro-eds.com/publications/
🫶🏻♥️ On a personal note, if you’ve sent me a message recently, thank you so much for your patience in replying. This has been the most extensive surgery I’ve ever undergone, and recovery has been much more challenging than I anticipated. I’m still dealing with severe muscle spasms and contractions whenever I’m upright for very long, and managing my adrenal insufficiency has been extremely hard. I’m really looking forward to catching up with everyone as I’m able.
Selected Publications
