Chiari Malformation Care

Our team of experienced neurosurgeons work closely with other specialties within the Institute for Brain Protection Sciences at Johns Hopkins All Children’s in St. Petersburg, Florida, to treat patients with Chiari malformation and to address any associated conditions.

Learn more about Chiari malformation

Our Approach to Treating Chiari Malformation

Our team will work closely with your family to determine a plan for the best outcome. While there are several types of Chiari malformation, the most common is Type 1, in which a blockage greater than 5-7 millimeters is present.

Patients with Chiari malformation may have a headache that worsens with sneezing, coughing or straining. They may also experience neck pain, difficulty swallowing, gagging, scoliosis, which may or may not be associated with a syrinx (collection of fluid), and sleep disturbances.

Most Chiari 1 patients have no other associated conditions, but children with other types may also have tethered cord, achondroplasia, Klippel-Feil syndrome, hydrocephalus or craniosynostosis.

To confirm a Chiari malformation your child will need an imaging scan, typically an MRI. In some cases, there may also be a sleep study.

For patients who are not showing symptoms, unless a syrinx is present, surgery is usually not required. When surgery is necessary, one of two approaches may be taken:

Bony decompression — The procedure relieves pressure by removing small pieces of bone. Recovery time is about two to four days on the surgical unit.
Bony decompression plus duraplasty — This procedure provides more extensive decompression by opening the covering of the brain and spinal cord and placing a patch to expand the area. Post-operative recovery involves an overnight stay in the pediatric intensive care unit followed by a two- to three-day stay in the surgical unit.

After surgery children can usually return to school within a week but should avoid strenuous physical activity for several weeks. Follow-up visits are scheduled around two weeks and six months post-procedure. An updated MRI scan may also be needed.