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NINDS Cerebral Cavernous Malformation Information Page

Synonym(s):   Cavernomas, Cavernous Angioma, Congenital Vascular Cavernous Malformations, Familial Hemangioma, Nevus Cavernosus, Vascular Erectile Tumor, Cavernous Malformation

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What is Cerebral Cavernous Malformation?

A cerebral cavernous malformation (CCM) is a collection of small blood vessels (capillaries) in the central nervous system (CNS) that is enlarged and irregular in structure.  In CCM, the walls of the capillaries are thinner than normal, less elastic, and prone to leaking.  Cavernous malformations can occur anywhere in the body, but usually only produce symptoms when they are found in the brain and spinal cord.  Some people with CCM – experts estimate 25 percent -- will never experience any related medical problems.  Others will have serious symptoms such as seizures (most commonly), headaches, paralysis, hearing or vision changes, and bleeding in the brain (cerebral hemorrhage).  There are familial (inherited) and sporadic (occurring for no clear reason) cases of CCM.  Researchers have discovered three different genes associated with CCM.  Studies are currently underway to understand the relationship between the mutations of each of these genes and their corresponding symptoms. 

Is there any treatment?

Seizures are usually treated with antiepileptic drugs.  If seizures don’t respond to medication, or there is recurring bleeding in the brain, surgical removal of the lesion(s) using microsurgical techniques is sometimes necessary.  

What is the prognosis?

Some people with CCM will never know they have the disorder because they will never experience symptoms.  The prognosis for CCM is variable for each individual, since the location and number of lesions determine the severity of the disorder.  CCM can be fatal if it causes severe brain hemorrhages.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes at the National Institutes of Health conduct research related to CCM in their clinics and laboratories and support additional research through grants to major medical institutions across the country.  Much of this research focuses on finding better ways to prevent, treat, and ultimately cure CCM.   

NIH Patient Recruitment for Cavernous Malformation Clinical Trials

Organizations

Column1 Column2
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
Danbury, CT   06810
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

 Angioma Alliance
520 W. 21st Street
Suite G2-411
Norfolk, VA   23517-1950
info@angiomaalliance.org
http://www.angiomaalliance.org
Tel: 866-HEAL-CCM (432-5226) 757-623-0615
Nevus Outreach, Inc
600 SE Delaware Ave
Suite 200
Bartlesville, OK   74
cschoessow@nevus.org
http://www.nevus.org
Tel: 877-426-3887 918-331-0595
Fax: 281-417-4020

  
Related NINDS Publications and Information


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 4, 2013