Cavernous malformations

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Overview

Cavernous malformations, also called cavernous angiomas and cavernomas, belong to a group of disorders known as vascular malformations that affect the blood vessels in a child's brain. A cavernous malformation is an abnormal cluster of dilated blood vessels. This mass is made up of little pockets, called caverns, filled with blood and lined with a special layer of cells, called the endothelium. These malformations can cause children to have headache, hemorrhages, seizures and stroke symptoms.

Ranging in diameter from microscopic to inches, cavernous malformations can be located anywhere in the body including the brain, eyes, kidney, liver, nerves, rectum and spinal cord. Those that develop in the brain or spinal cord, called cerebral cavernous malformations (CCM), are the most serious.

About one in 200 people have a cavernous malformation. The condition affects both adults and children. About 25 percent of cases are diagnosed in people before the age of 20. In some cases, these malformations run in families and are inherited.

Cavernous malformations are treated at our UCSF Pediatric Stroke and Cerebrovascular Disease Center, the only comprehensive cerebrovascular disease center for children in the country, staffed by the world's leading experts in pediatric stroke and cerebrovascular disease.

Signs & symptoms

Some children with cavernous malformations may not experience symptoms at all, while others may suffer from a variety of problems. Symptoms typically depend on the location of the malformation and may include:

  • Bleeding, called a hemorrhage, in the brain that may damage surrounding brain tissue

  • Headaches ranging in severity, duration and intensity

  • Neurological problems such as weakness in arms and legs as well as problems with vision, balance, memory and attention

  • Seizures ranging in severity, duration and intensity

Diagnosis

Cavernous malformations usually are not diagnosed until they start causing symptoms.

If your child has symptoms, his or her doctor may recommend a magnetic resonance imaging (MRI) scan, which is the best way to diagnose cavernous malformations. This non-invasive procedure uses a combination of large magnets, radiofrequencies and a computer to produce a detailed image of the brain. An MRI may require sedation or anesthesia for children.

MRI scans may be repeated over the course of your child's treatment to detect any change in the size of the malformation, recent bleeding and the appearance of new lesions.

Treatment

At UCSF Benioff Children's Hospital, a team of experts — including a neurologist, neurosurgeon and neuroradiologist — will work with you and your family to develop the best treatment plan for your child.

Treatments include close monitoring or observation and surgery.

Observation

If your child's cavernous malformation isn't causing any problems, your child's doctor may recommend that the malformation simply be observed with yearly magnetic resonance imaging (MRI) scans to detect changes.

However, it is impossible to predict what will happen with these malformations. Some will cause repeated hemorrhages with worsening symptoms such as difficulty speaking, headaches, seizures, vision problems or weakness in the arms or legs, while others remain inactive and don't cause symptoms for many years.

Surgery

Surgery is often recommended as treatment. Because these malformations are so distinct from the surrounding brain tissue, in many cases, they can be completely removed without causing problems.

It is important to remove the entire malformation because it can grow back if a small piece is left behind.

The risk of the operation depends on the size and location of the cavernous malformation and the general health of your child.

UCSF Benioff Children's Hospitals medical specialists have reviewed this information. It is for educational purposes only and is not intended to replace the advice of your child's doctor or other health care provider. We encourage you to discuss any questions or concerns you may have with your child's provider.

Where to get care

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Neurosurgery Program

Neurosurgery Program

San Francisco / Oakland / Los Gatos / Greenbrae / Modesto / Sacramento /...

Cerebrovascular & Stroke Program

Cerebrovascular & Stroke Program

1825 Fourth St., Fifth Floor, 5A
San Francisco, CA 94158

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