Parents are very intuitive to the developmental growth of their children and how they progress as a baby, toddler, pre-schooler, to elementary age. Since an infant, Zeke’s mom, Deb, knew something was wrong for a longtime.

He walked on his toes constantly – he never walked on his flat feet. He felt no hot or cold. Zeke had periods of rage and irritability. And as may Chiari patients, his speech was impeded by a thick tongue. Then one day during lunchtime, he had a one pupil that was dilated very large. A visit to the eye doctor indicated that there was extreme pressure on Zeke’s retina – pressure that was coming from the brain. An emergency trip was made to the ER and it was then doctors diagnosed Zeke as having Chiari malformation.

Zeke’s mom did extensive research about Chiari malformation. She communicated with many patients who had great surgical outcomes and one name kept coming up, Dr. Gilmer, located in Royal Oak, Mich.

“She found me on the internet,” says Holly Gilmer, M.D., neurosurgeon.  “She did her research, searching all opportunities, and was very particular about what she wanted for Zeke She found that I specialize in Chiari malformation surgery.”

Deb says, “Zeke and his family traveled from Maine and we’re so glad we found Dr. Gilmer.”

What is Chiari Malformation

Chiari malformations are structural defects that occur in the cerebellum, the part of the brain that controls coordination and muscle movement. Previous estimates were that malformations occur in about one in every 1,000 births, but increased use of diagnostic imaging indicates that the disorder may be more common.

Normally the cerebellum and parts of the brain stem sit in the posterior fossa of the skull, above the foramen magnum, or the opening to the spinal canal. In individuals with Chiari malformations, the posterior fossa is abnormally small and misshapen. It presses on the brain, forcing it downward and causing the cerebellar tonsils to protrude into the spinal canal. This blocks the flow of cerebrospinal fluid to the brain, which can lead to hydrocephalus and/or increased intracranial pressure. It also causes direct pressure on the brain stem and upper spinal cord.

Chiari malformation is diagnosed by MRI. When deciding if surgery is an option, the extent of the herniation of the brain into the spine is not as important as the symptoms the patient experiences. For some adults, symptoms are not severe and they do not require surgery. Chiari malformation is also sometimes an incidental finding on MRI, and the person is asymptomatic.