NINDS Locked-In Syndrome Information Page

Table of Contents (click to jump to sections)

What is Locked-In Syndrome?
Is there any treatment?
What is the prognosis?
What research is being done?
Clinical Trials
Organizations

What is Locked-In Syndrome?

Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement. It may result from traumatic brain injury, diseases of the circulatory system, diseases that destroy the myelin sheath surrounding nerve cells, or medication overdose. Individuals with locked-in syndrome are conscious and can think and reason, but are unable to speak or move. The disorder leaves individuals completely mute and paralyzed. Communication may be possible with blinking eye movements

Is there any treatment?

There is no cure for locked-in syndrome, nor is there a standard course of treatment. A therapy called functional neuromuscular stimulation, which uses electrodes to stimulate muscle reflexes, may help activate some paralyzed muscles. Several devices to help communication are available. Other treatment is symptomatic and supportive.

What is the prognosis?

While in rare cases some patients may regain certain functions, the chances for motor recovery are very limited.

What research is being done?

The NINDS supports research on neurological disorders that can cause locked-in syndrome. The goals of this research are to find ways to prevent, treat, and cure these disorders.

NIH Patient Recruitment for Locked-In Syndrome Clinical Trials

Organizations

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National Rehabilitation Information Center (NARIC) 8201 Corporate Drive Suite 600 Landover, MD 20785 naricinfo@heitechservices.com http://www.naric.com Tel: 301-459-5900/301-459-5984 (TTY) 800-346-2742 Fax: 301-562-2401	National Stroke Association 9707 East Easter Lane Suite B Centennial, CO 80112-3747 info@stroke.org http://www.stroke.org Tel: 303-649-9299 800-STROKES (787-6537) Fax: 303-649-1328
National Institute on Disability and Rehabilitation Research (NIDRR) U.S. Department of Education Office of Special Education and Rehabilitative Services 400 Maryland Ave., S.W. Washington, DC 20202-7100 http://www.ed.gov/about/offices/list/osers/nidrr Tel: 202-245-7460 202-245-7316 (TTY)

Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

Last updated February 13, 2007