Syringomyelia is a chronic, neurological condition that involves having one or multiple syrinxes, or fluid-filled cysts, in the spinal cord.
Over time, the syrinx can expand and elongate, causing damage to the spinal cord and leading to a variety of symptoms. These may include pain, weakness, stiffness, and sensory disturbances–particularly in the neck, shoulders, arms, and hands. The condition can develop due to a number of underlying causes, including congenital malformations like Chiari malformation, spinal cord injuries, tumors, or inflammation around the spinal cord.
Diagnosis typically involves imaging tests, such as MRI scans, which allow doctors to visualize the syrinx(es). Treatment options depend on the severity of the condition and the underlying cause. In some cases, managing symptoms with medications may be sufficient, while in others, surgical intervention may be necessary to attempt to address the syrinx or its cause.
There is limited medical knowledge and research into this condition, which can make navigation with medical professionals, diagnosis and treatment, pain management, and maintaining mental health difficult.
RESOURCES
American Syringomyelia & Chiari Alliance Project
Bobby Jones Chiari & Syringomyelia Foundation
National Institute of Neurological Disorders and Stroke
FACEBOOK SUPPORT GROUPS
Syringomyelia and Syrinx Support
Painfully Empowered 