Important
It is possible that the main title of the report Syringomyeliais not the name you expected.
General Discussion
Syringomyelia is a neurological disorder characterized by the formation of a fluid-filled cyst (syrinx) within the spinal cord. This cyst may, for unknown reasons, expand during adolescence or the young adult years, destroying the center of the spinal cord as it does.
As the syrinx expands, it affects the nerves that stimulate the patient’s legs, arms, back and shoulders. In turn, the affected individual may feel considerable pain and weakness, and may lose the ability to distinguish hot from cold objects. The combination of symptoms and signs may vary considerably from person to person, depending on where in the spine the syrinx is located and how much it expands over time. Often, the symptoms develop slowly. Unless the condition is treated surgically, it may lead to neurological deficits and chronic, intense pain.
Resources
American Syringomyelia Alliance Project, Inc. (ASAP)
300 N. Green Street, Suite 412
Longview, TX 75601
Tel: (903)236-7079
Fax: (903)757-7456
Tel: (800)272-7282
Email: info@asap.org
Internet: http://www.asap.org
Canadian Syringomyelia Network
69 Penny Crescent
Markham
Ontario, L3P 5X7
Canada
Tel: 9054718278
Fax: 9059444844
Email: barb@csn.ca
Internet: http://www.csn.ca
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/
World Arnold Chiari Malformation Association
31 Newtown Woods Road
Newtown Square, PA 19073
Tel: (610)353-4737
Email: internautbhm2@comcast.net
Internet: http://www.wacma.com
Christopher Reeve Paralysis Foundation
500 Morris Ave
Springfield, NJ 07081
USA
Tel: 9733792690
Fax: 9739129433
Tel: 8002250292
Email: info@crof.org
Internet: http://www.crpf.org, http://www.paralysis.org
Christopher S. Burton Syringomyelia Foundation, Inc.
3701 NW 5th Ave.
Fort Lauderdale, FL 33309
Tel: (954)727-5137
Fax: (954)636-2409
Email: info@thesmfoundation.org
Internet: http://www.theSMfoundation.org and http://www.SyringomyeliaFoundation.org
C&S Patient Education Foundation
320 Osprey Court
Wexford, PA 15090
USA
Tel: 7249400116
Fax: 7249400172
Chiari and Syringomyelia Network
4231 N. Winfield Scott Plaza #7
Scottsdale, AZ 85251
USA
Tel: 4803507177
Tel: 8666617607
Email: csinfo@chiarisn.org
Internet: http://www.chiarisn.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html
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 orphan@rarediseases.org
Last Updated: 9/23/2007
Copyright 1987, 1989, 1996, 1998, 1999, 2006, 2007National Organization for Rare Disorders, Inc.
