A primary care physician may suspect a Chiari malformation, and may provide a tentative diagnosis. But a patient with a suspected Chiari malformation should always be referred to a neurosurgeon for a confirmed diagnosis and an evaluation. The neurosurgeon will make a recommendation to the patient and family as to what course of treatment is appropriate. (See Surgery for Chiari.)
Experienced neurosurgeons at major brain and spine centers have treated many patients with Chiari and will evaluate each new case carefully before making a recommendation. The best brain and spine centers take a team approach to patient evaluation, and consider input from multiple specialists before making a recommendation. Some of the questions a neurosurgeon might consider before recommending a course of treatment are:
The neurosurgeon will make a recommendation based on the risk of surgery vs. the risk of not operating. If the patient does not have symptoms and does not have a syrinx, yearly monitoring is often all that's needed.
In July 2023, Dr. Greenfield led an informative session, presented by the Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF), called "I've Been Diagnosed with Chiari: Now What?" The program highlighted the pediatric patient and caregiver's perspective on their personal journey from first sign of symptoms through treatment and beyond. Dr. Jeffrey Greenfield and nurse practitioner Amanda Cruz interviewed two patients and their mothers on their experience with Chiari malformation. These families had very different and personal experiences that explore choosing local versus traveling for treatment, their journeys to diagnosis, how they felt along the way, how they feel now, and advice for other Chiari families. Watch a video of the session below:
Reviewed by Jeffrey Greenfield, Ph.D., M.D.
Last reviewed/last updated: April 2021