MEDFORD, Ore. — Many people with a rare and potentially deadly brain disease, called Chiari, go undiagnosed for years.
A Brookings woman has the disease, and says she and other Chiari patients in Southern Oregon are trying to attract a specialist to our area.
Chiari malformations occur in the lower part of the brain, there is a surgery that can relieve the pain associated with the disease but chiari patients in Southern Oregon do not have access to specialists. One sufferer will have to fly to Seattle for a second surgery.
“The brain surgery that I had on my Chiari actually was obsolete, they haven’t done it for 10 years. So they’re going to have to go in and do the duraplasty to check the spinal fluid,” said Chiari patient Victoria Norton-Gobron.
Victoria says Chiari patients all over the world send each other socks to stand for support. The International Chiari Association website provides more information on the disease and how to support research.