Tethered Cord Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Tethered Cord Syndrome 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

  • TCS
  • tethered spinal cord syndrome

Disorder Subdivisions

  • None

General Discussion

Tethered cord syndrome is a stretch-induced functional disorder associated with the fixation (tethering) effect of inelastic tissue on the caudal spinal cord, limiting its movement. This abnormal attachment is associated with progressive stretching and increased tension of the spinal cord as a child ages, potentially resulting in a variety of neurological and other symptoms. Due to the variation of the growth rate of the spinal cord and the spinal column, the progression of neurological signs and symptoms is highly variable. Some individuals present with tethered cord syndrome at birth (so-called congenital), while others develop the symptomatology in infancy or early childhood. Other individuals may not develop any noticeable symptoms until adulthood. Although some authors call these cases acquired, the majority of these cases are mostly developmental, corresponding to the progressive development of excess fibrous connective tissue (fibrosis) in the filum terminale. The filum terminale is a strand of tissue that bridges the spinal cord tip and the tailbone (sacrum). The inelastic structures in children originated from defective closure of the neural tube (the precursor of the spinal cord) during embryonic development, eventually forming a condition known as spina bifida. Because of its functional (physiological) nature, tethered cord syndrome can be reversible if surgically treated in its early stage.

Resources

American Syringomyelia & Chiari Alliance Project
P.O. 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

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

Spina Bifida Association of America
4590 MacArthur Boulevard NW
Suite 250
Washington, DC 20007-4226
Tel: (202)944-3285
Fax: (202)944-3295
Tel: (800)621-3141
Email: sbaa@sbaa.org
Internet: http://www.sbaa.org

International Federation for Spina Bifida and Hydrocephalus
Cellebroersstraat 16
Brussels, B1000
Belgium
Tel: 32025020413
Fax: 32025021129
Email: info@ifglobal.org
Internet: http://www.ifglobal.org

NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Internet: http://www.ninds.nih.gov/

Spina Bifida and Hydrocephalus Canada
Suite 647-167 av. Lombard Avenue
Winnipeg
MB
R3B 0V3
Canada
Tel: 2049253650
Fax: 2049253654
Tel: 8005659488
Email: info@sbhac.ca
Internet: http://www.sbhac.ca

Birth Defect Research for Children, Inc.
976 Lake Baldwin Lane
Orlando, FL 32814
USA
Tel: (407)895-0802
Email: staff@birthdefects.org
Internet: http://www.birthdefects.org

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

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 orphan@rarediseases.org

Last Updated:  12/8/2010
Copyright  1990, 1999, 2007, 2010 National Organization for Rare Disorders, Inc.

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