New Support Group for Syringomylia and Chiari Patients and Their Families

The American Syringomylia and Chiari Alliance Project has formed a new support group that will meet in Bangor for patients and their families. This rare neurological disorder is often misdiagnosed so, in addition to offering support, the group will also provide information about healthcare workers familiar with the condition.

We ran a news story Monday about the support group and had folks call us, asking for more information. So I wanted to share the details here for anyone afflicted with either of these disorders.

For those who don't know, Chiari Malformation is the term for the lack of a closing flap at the back of a person's skull. That disorder can lead to Syringomylia, which involves fluid-filled cysts that restrict the flow of spinal fluid. The conditions can damage the spinal cord and cause any number of neurological problems, including changes in speech, coordination, and lack of sensitivity to hot and cold. Visual problems, loss of dexterity, problems swallowing, and trouble sleeping are other symptoms, as well. The condition can be congenital or it can be caused by a spinal cord injury.

There is an operation that can correct the problem and help with many of the symptoms, but the challenge is finding a doctor who is familiar with the conditions and can correctly diagnose the problem. Many doctors will misdiagnose because they aren't familiar with CM and SM.

So Lisa Dunton-Roy, who suffers from CM, is working with the American Syringomylia & Chiari project (or ASAP) to start this support group. She says it's important to have contact with others who are going through the same issues and to have a sharing of information about possible solutions. The first meeting will be held on March 15th at 2 p.m. at Dysart's Restaurant on Broadway in Bangor. For more information, call Lisa at 570-6428 or email maine_support@asap.org.