Syringomyelia

National Organization for Rare Disorders, Inc.

Important
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.

Synonyms

  • Morvan Disease
  • Hydromyelia
  • Spinal Cord Cyst
  • Syringohydromyelia

Disorder Subdivisions

  • None

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 & Chiari Alliance Project Inc.
300 N. Green Street, Suite 412
PO Box 1586
Longview, TX 75606-1586
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 National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
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
636 Morris Turnpike, Suite 3A
Short Hills, NJ 07078
USA
Tel: (973)379-2690
Fax: (973)912-9433
Tel: (800)225-0292
Email: prc@ChristopherReeve.org
Internet: http://www.christopherreeve.org

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Christopher S. Burton Syringomyelia Foundation, Inc.
2129 Nova Village Drive
Fort Lauderdale, FL 33317
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: (724)940-0116
Fax: (724)940-0172

Chiari and Syringomyelia Network
4231 N. Winfield Scott Plaza #7
Scottsdale, AZ 85251
USA
Tel: (480)350-7177
Tel: (866)661-7607
Email: csinfo@chiarisn.org
Internet: http://www.chiarisn.org

Chiari & Syringomyelia Foundation (CSF)
29 Crest Loop
Staten Island, NY 10312
Tel: 718-966-2593
Fax: 718-966-2593
Email: dpoppe@CSFinfo.org
Internet: http://www.CSFinfo.org

For a Complete Report

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

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