Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord, expands and elongates over time, and destroys the center of the cord, resulting in pain, weakness, and stiffness in the back, shoulders, arms or legs. Symptoms can include headaches, inability to distinguish heat and cold, disruption in body temperature, and may adversely affect sweating, sexual function and bladder and bowel control.
SM can be caused by trauma to the spinal cord, congenital developmental problems of the brain and/or spinal, or from trauma as a result of a car accident or serious fall. It may lie dormant and undetected for months or years until symptoms become bothersome enough to warrant medical attention. Many people are not diagnosed until mid-life, but MRI testing has greatly improved the ability to diagnose SM.
Chiari (kee-AR-ee) malformation (CM) is characterized by herniation of the cerebellus through the large opening in the base of the skull into the spinal canal. The herniated tissue blocks the circulation of the cerebrospinal fluid in the brain which can result in the formation of a cavity within the spinal cord. Patients with CM1 may experience no symptoms, or may not appear until adolescence or early adulthood. They often complain of severe headaches and neck pain, dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because symptoms are so complicated, patients with CM1 are often misdiagnosed. CM2, the most prevalent form, is usually as a result of congenital malformation, although some cases are acquired. CM2 and CM3 are more severe malformations that are apparent at birth.
Today SM and CM affect approximately 300,000 people in the U.S. with an estimated 13,000 additional cases diagnosed each year. In an effort to create awareness of, and to learn more about the causes, symptoms and potential treatment options for SM and CM, Mark and Barbara Kane of West Seneca founded the Column of Hope (COH) Foundation in an attempt to help find answers for their daughter who suffers from both.
Over the past eight years COH has raised more than $430,000 to fund research, with much of it occurring in Australia under the supervision of Dr. Marcus Stoodley, aided by the study of many local patients participating in the ”Out of Phase” portion carried out at Dent Neurological Institute in Amherst. Today the Stoodley team’s research, focusing on post-traumatic syringomyelia, continues.
On October 15, 2011 John Hiess, M.D., from the National Institute of Health (NIH) informed an audience in Buffalo that further studies are currently underway. The combined talents of researchers in Madison, Wisconsin and Oslo, Norway, are now in the process of studying turbulence in cerebral spinal fluid.
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