Maura was diagnosed with Chiari I in 2007 at age 6 via a traditional horizontal MRI. “I had a decompression shortly after diagnosis and had significant relief for 8 months. After that symptoms returned but slightly differently, so I had a full decompression. Turns out it was craniocervical instability that caused the symptoms to return after the first decompression so the second decompression was ineffective.”
The underdiagnosis and treatment of Craniocervical junction disorders are experienced worldwide, in both private and public healthcare systems today. We will explore this phenomenon through the use of two primary sources; a review of current literature available on the subject and direct patient feedback I collected through interviews conducted in writing with people who have been diagnosed with Chiari and craniocervical instability (CCI), also known as Occipitoatlantialaxial Hypermobility.
Chiari Malformations are structural defects located at the in the base of the skull where the spine meets it. These structural defects can cause the brain to sag into the spinal canal, causing herniation of a portion of the cerebellum, cerebellar tonsils and/or the fourth ventricle. Depending on the severity, there are a variety of symptoms and complications that come with Chiari Malformation.