Cavernomas 

Cavernomas are clusters of abnormal blood vessels mainly found in the brain and spinal cord.

They are sometimes known as cavernous angiomas, cavernous hemangiomas or cerebral cavernous malformations.

A typical cavernoma looks a bit like a raspberry, but varies in size from microscopic to inches across. It is made of different sized bubbles (caverns) filled with blood and lined with a special layer of cells.

Symptoms of cavernomas

The cells that line a cavernoma are similar to those lining normal blood vessels, but are leaky and can cause:

• seizures (the most common symptom, which can be treated with medication)
• a stroke (due to bleeding in the brain)
• weaknesses in limbs
• vision and balance problems
• loss of memory

Only around half of people diagnosed with a cavernoma will have symptoms.

Who is affected

Cavernomas sometimes run in families, but usually occur as a one-off without affecting other family members.

The average age to be diagnosed with a cavernoma is 40.

International research programmes are trying to find the cause of this condition and how these defective blood vessels are formed, and are investigating the long-term outlook for people with cavernomas.

Monitoring symptoms

Symptoms may come and go as the cavernoma changes in size when it bleeds and reabsorbs blood.

Although cavernomas have been known about since the 1930s, they were not reliably diagnosed until the advent of the magnetic resonance imaging (MRI) scan in the 1980s.

How common are cavernomas?

Cavernomas are estimated to occur in about 1 person in 600 without causing any symptoms. And every year, roughly 1 person in every 400,000 in the UK is diagnosed with a cavernoma that has caused symptoms.

Every child of someone with inherited cavernomas has a 50% chance of inheriting the condition. 

Surgery

Surgery may be used to treat cavernomas that:

• have bled
• are causing seizures that cannot be controlled with medication

Risks of surgery include stroke, paralysis, coma or death, although the exact risks depend on the location of the cavernoma in the brain or spine.

More information

For more information on cavernomas, visit the Cavernoma Alliance UK website.