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07.12.2023

Cerebral cavernous malformation

Cerebral cavernous malformations (CCMs)—also known as cavernomas and cavernous angiomas—are abnormal clusters of closely packed, thin-walled blood vessels known as capillaries that form lesions that move tissue in the brain or spinal cord from their normal place and can alter blood flow. Cavernous malformations can be found in the brain, spinal cord, or other parts of the body. The lesions contain slow-moving or clotted blood. Lesions in the brain and spinal cord are particularly fragile and likely to bleed. Cerebral cavernous malformations in the brain can cause:

  • Bleeding in the brain (hemorrhagic stroke)
  • Seizures
  • Headaches
  • Back pain
  • Hearing or vision changes
  • Paralysis

Cerebral cavernous malformations are rare. They can occur on their own or be inherited, caused primarily by a mutation in one of three Cerebral cavernous malformation genes: CCM1, CCM2, and CCM3. Some people may have many lesions and some people may have no symptoms.

It is normal for the capillaries to bleed more than once. Cerebral cavernous malformations can be fatal, particularly if they cause severe bleeding in the brain. Some cerebral cavernous malformations are left untreated. When possible, cerebral cavernous malformations are mainly treated surgically. Medications are available to treat other symptoms.

How can I or my loved one help improve care for people with cerebral cavernous malformations?

Consider participating in a clinical trial so clinicians and scientists can learn more about cerebral cavernous malformations. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.

All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.

For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with Cerebral cavernous malformation at Clinicaltrials.gov, a database of current and past clinical studies and research results.

Where can I find more information about cerebral cavernous malformations?

Information may be available from the following resources:

Angioma Alliance
Phone: 866-432-5226 or 757-623-0615

Genetics and Rare Diseases (GARD) Information Center

MedlinePlus

PubMed

Content source: https://www.ninds.nih.gov/health-information/disorders/cerebral-cavernous-malformations. Accessed July 11, 2023.

The information in this document is for general educational purposes only. It is not intended to substitute for personalized professional advice. Although the information was obtained from sources believed to be reliable, MedLink, its representatives, and the providers of the information do not guarantee its accuracy and disclaim responsibility for adverse consequences resulting from its use. For further information, consult a physician and the organization referred to herein.

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