National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Syringomyelia is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.
Syringomyelia is a condition characterized by a fluid-filled cavity or cyst known as a syrinx that forms within the spinal cord. Syringomyelia is a chronic condition and a syrinx can expand over time compressing or destroying the surrounding nerve tissue. A wide variety of symptoms can potentially be associated with syringomyelia depending upon the size and exact location of the syrinx. Common signs/symptoms include pain in the neck and shoulders, muscle weakness, pain and stiffness in the legs, numbness or decreased sensation especially to hot and cold, abnormal curvature of the spine (scoliosis), muscle contractions, and uncoordinated movements (ataxia). The majority of cases of syringomyelia are associated with a complex brain abnormality known as a Chiari malformation. Additional known causes of syringomyelia include tethered cord syndrome, meningitis (arachnoiditis), certain tumors of the spinal cord, and trauma. In some cases, no underlying cause can be identified (idiopathic).
The terminology used in the medical literature to describe syringomyelia can be confusing. Syringomyelia is often associated with an abnormality of the craniovertebral junction, usually a Chiari malformation, and these cases may be referred to as congenital syringomyelia. Secondary syringomyelia refers to cases that have a known cause. The term primary syringomyelia has been used to refer to cases of unknown cause or to cases that occur because of specific known causes that damage the spinal cord. Posttraumatic syringomyelia refers to cases that result from trauma to the spinal cord (these cases are sometimes sub-classified as primary syringomyelia).
Some individuals have a condition related to syringomyelia known as hydro(syringo)myelia, which is characterized by abnormal widening of the central canal of the spinal cord (the normal small canal running through the center of the spinal cord). Some physicians use the terms syringomyelia or hydromyelia interchangeably. Hydromyelia may also be present in infants and young children with or without brain abnormalities, such as Chiari malformation type II. The fluid-filled cavities in cases of syringomyelia often do not connect to any other fluid-filled areas or spaces and occur more often in adults than children.
American Syringomyelia & Chiari Alliance Project
P.O. Box 1586
Longview, TX 75606-1586
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
4340 East West Highway Ste 950
Bethesda, MD 20814
NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Canadian Syringomyelia Network
69 Penny Crescent
Ontario, L3P 5X7
World Arnold Chiari Malformation Association
31 Newtown Woods Road
Newtown Square, PA 19073
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Christopher S. Burton Syringomyelia Foundation, Inc.
P.O. Box 100335
Fort Lauderdale, FL 33310-0335
320 Osprey Court
Wexford, PA 15090
Chiari & Syringomyelia Foundation
29 Crest Loop
Melville, NY 11747
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".
The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.
It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report
This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email firstname.lastname@example.org
Last Updated: 10/30/2014
Copyright 1987, 1989, 1996, 1998, 1999, 2006, 2007, 2014 National Organization for Rare Disorders, Inc.