Articles » NINDS Encephaloceles Information Page: NINDS

NINDS Encephaloceles Information Page: NINDS

Article title: NINDS Encephaloceles Information Page: NINDS

Conditions: Encephaloceles

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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.

 Organizations

Association of Birth Defects Children
930 Woodcock Road
Suite 225
Orlando, FL 32803
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
resourcecenter@modimes.org
http://www.modimes.org/
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203

National Organization for Rare Disorders (NORD)
P.O. Box 8923
(100 Route 37)
New Fairfield, CT 06812-8923
orphan@rarediseases.org
http://www.rarediseases.org/
Tel: 203-746-6518 800-999-NORD (6673)
Fax: 203-746-6481

This fact sheet is in the public domain. You may copy it.Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892



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