Synonyms|Editors|Languages|Comments|Home|Sponsors|Health Information
 
  Encephaloceles 
  
Reviewed  12-14-2001  

Get Web page suited for printing
Email this to a friend or colleague
Studies with patients

Table of Contents (click to jump to sections)

What are Encephaloceles?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations

What are Encephaloceles?
Encephaloceles are rare neural tube defects characterized by sac-like protrusions of the meninges (the membranes that cover the brain) and brain tissue through abnormal openings in the skull. The defects are caused by failure of the neural tube to close during the development of the fetus. Symptoms may include hydrocephalus, spastic quadriplegia (paralysis of all 4 limbs), developmental delay, microcephaly, vision problems, mental and growth retardation, ataxia, and seizures. Some affected children may have normal intelligence. Encephaloceles are often accompanied by craniofacial abnormalities or other brain malformations.

Is there any treatment?
Generally, surgery is performed during infancy to place the protruding tissues back into the skull, remove the sac, and correct the associated craniofacial abnormalities. Hydrocephalus may require a shunt. Other treatment is symptomatic and supportive.

What is the prognosis?
The prognosis for individuals with encephaloceles varies depending on what brain tissue is involved, the location of the sacs, and the accompanying brain malformations.

What research is being done?
The NINDS conducts and supports a wide range of studies that explore the complex mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding how this process can go awry and, thus, offers hope for new means to treat and prevent congenital brain disorders including neural tube defects such as encephaloceles.

Select this link to view a list of studies currently seeking patients.

 Organizations

Birth Defect Research for Children
930 Woodcock Road
Suite 225
Orlando, FL 32803
staff@birthdefects.org
http://www.birthdefects.org
Tel: 407-895-0802 800-313-ABDC (2232)
Fax: 407-895-0824

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.com
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291


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.


Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892




Return to top


Home | About NINDS | Disorders | Funding | News & Events | Find People | Jobs & Training | Accessibility

H H S Logo - link to U. S. Department of Health and Human Services     N I H logo - link to U. S. National Institutes of Health    N I N D S logo - link to National Institute of Neurological Disorders and Stroke    FirstGov Logo - link To FirstGov