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 blackberry. It is filled with blood that flows slowly through vessels that are like 'caverns'. Cavernomas vary in size from a few millimetres to several centimetres across.
In the UK, only around half of people diagnosed with a cavernoma will have symptoms. A magnetic resonance imaging (MRI) scan is the most reliable test used to diagnose a cavernoma.
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.
Cavernomas sometimes run in families. Every child of someone with inherited cavernomas has a 50% chance of inheriting the condition.
However, for 9 out of 10 people affected by a cavernoma, they occur as a one-off without affecting other family members.
The average age to be diagnosed with a cavernoma in the UK is 40.
The cells that line a cavernoma are similar to those lining normal blood vessels, but are leaky and can cause:
The symptoms of a cavernoma can vary in severity. Sometimes bleeding may cause no symptoms at all as only a small amount of blood leaks out. Some people with a cavernoma may experience:
However, these can also be signs of other conditions and may not be related to the cavernoma at all.
Symptoms may come and go as the cavernoma changes in size when it bleeds and reabsorbs blood. Monitoring your symptoms is important as new symptoms, such as a stroke, might indicate that the cavernoma is bleeding.
There is no proven benefit from monitoring the appearance of a cavernoma with regular magnetic resonance imaging (MRI) scans. This is because cavernomas do not grow like a tumour.
People who have already had a stroke due to their cavernoma are more likely to have another one in the future than people who have never had any symptoms.
Women with cavernomas that have already bled seem to be at greater risk of further bleeding than men. The risk of a second bleed from a cavernoma decreases over time.
Surgery may be used to treat cavernomas that have bled or are causing seizures that cannot be controlled with medication.
Types of treatment that are used in the UK include:
Stereotactic radiotherapy is still being studied for the treatment of cavernomas. It is only used if the position of the cavernoma makes neurosurgery too dangerous. It is not known how effective stereotactic radiotherapy is at stopping cavernomas bleeding after treatment.
Risks of treatment include stroke and death, although the exact risks depend on the location of the cavernoma in the brain or spine.
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.
For more information on cavernomas, visit the Cavernoma Alliance UK website.
Important: Our website provides useful information but is not a substitute for medical advice. You should always seek the advice of your doctor when making decisions about your health.