Tethered Cord Syndrome

National Organization for Rare Disorders, Inc.

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Important
It is possible that the main title of the report Tethered Cord Syndrome is not the name you expected.

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.

Supporting Organizations

American Syringomyelia & Chiari Alliance Project, Inc.

P.O. Box 1586
Longview, TX 75606-1586
Tel: (903)236-7079
Fax: (903)757-7456
Tel: (800)272-7282
Email: info@asap.org
Website: http://www.asap.org

Birth Defect Research for Children, Inc.

976 Lake Baldwin Lane
Orlando, FL 32814
USA
Tel: (407)895-0802
Email: staff@birthdefects.org
Website: http://www.birthdefects.org

International Federation for Spina Bifida and Hydrocephalus

Cellebroersstraat 16
Brussels, B1000
Belgium
Tel: 32025020413
Fax: 32025021129
Email: info@ifglobal.org
Website: http://www.ifglobal.org

March of Dimes

1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Email: AskUs@marchofdimes.org or preguntas@nacersano.org
Website: http://www.marchofdimes.org and nacersano.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
Website: http://www.ninds.nih.gov/

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
Website: http://www.sbaa.org

Spina Bifida and Hydrocephalus Canada

Suite 647-167 av. Lombard Avenue
Winnipeg
R3B 0V3
Canada
Tel: 2049253650
Fax: 2049253654
Tel: 8005659488
Email: info@sbhac.ca
Website: http://www.sbhac.ca

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, 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.

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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.

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