There are many Chiari organizations raising funds for "research" with no direct impact to suffering patients. Chiari Angels is different in that we intend to help patients plan and finance appointments to Chiari Specialists.
As a Chiari patient and dedicated patient advocate I see Chiari patients needlessly suffering at the hands of uneducated doctors. The truth of the matter is there are only a handful of true Chiari Specialists across the nation. Says, Founder F.C. Kerr
The purpose of Chiari Angels organization is to fund specific Chiari projects which bring awareness, education, and hope to patients which suffer from Arnold Chiari Malformation and associated illnesses.
Chiari Malformation is a condition in which the cerebellar tonsils descend into the spinal canal causing compression of the brain stem and interruption of spinal fluid flow. The condition is VERY SERIOUS, yet most doctors dismiss the condition as a non-symptomatic anomaly found on MRI's. Many neurosurgeons can do posterior fossa decompression surgery, but few do it correctly! (resect & cauterize cerebellar tonsils) Most patients aren't even aware of the newest procedure which prevents re-herniation of cerebellar tonsils & re-compression of the brain stem.
Sick patients are shuffled from doc to doc and subjected to torturous tests, various drugs, and useless treatments. Minimally invasive surgeries leave many patients in worse shape than before surgery! Many patients have lost their income/insurance and are unable to afford the necessary appointment with a Chiari Specialist. There are only a handful of doctors that recognize Chiari Malformation symptoms, regardless of size. We want to help patients in need find ways to get to "true" Chiari Specialists. Quality of life can be dramatically improved by seeing a Chiari-Specializing Neurosurgeon.
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