What is a Cavernoma?
A cavernoma is a cluster of abnormal blood vessels, found mostly in the brain and spinal cord.
Many people live well with a cavernoma and support is available.
Cavernoma's are filled with blood that flows slowly through them.
They have thin leaky cell walls. This can sometimes cause blood within the cavernoma to ooze (bleed/leak) outwards into the surrounding tissue or within itself, enlarging the cavernoma. This can cause many symptoms.
Blood may have oozed slowly out of the cavernoma over time or there may have been a haemorrhage (bleed) of a larger amount of blood over a shorter period of time, such as a few days.
Cavernoma can be symptomatic or asymptomatic.
The genetic (familial) form is recognised as a rare disease.
A cavernoma is not a tumour as it is non-cancerous, does not spread to other parts of the body, is not a solid mass of cells and is not made of rapidly dividing cells like tumours.
Cavernoma are also known as: Cavernous Angioma, Cavernous Haemangioma or Cerebral Cavernous Malformation(CCM).
Brain
Cavernoma Symptoms
Cavernoma causing symptoms are rare.
It is estimated that 1 in 625 people have a cavernoma. This includes both symptomatic and asymptomatic.
At least 1 in 400,000 people are diagnosed with a symptomatic cavernoma each year.
Statistically 1 in 2,700 people who have a cavernoma has symptoms.
The type, severity, combination and duration of symptoms may vary, depending on the location of the cavernoma.
Symptoms can include;
‣ haemorrhage, strokes, seizures, headaches
‣ tremors, weakness, numbness
‣ speech and eyesight problems
‣ fatigue, memory and concentration difficulties
‣ partial or full paralysis
A cavernoma with no symptoms is referred to as been asymptomatic/incidental finding.
‣ Found by chance on MRI scans that where been done for other reasons
‣ Often do not require immediate treatment
‣ Still need monitoring to check for changes
MRI scans are mainly used to diagnose cavernomas.
Causes of Cavernoma: Sporadic and Genetic Forms
There are sporadic and genetic (familial) forms of cavernoma.
In September 2026, the Orphanet Medical and Scientific Commission decided to include a specific Orphanet code for symptomatic sporadic cerebral cavernous malformation (CCM). This follows advocacy by the European Cavernoma Alliance, working with Orphanet, to ensure that people with symptomatic sporadic cavernomas of the brain and spinal cord are appropriately recognised within the European rare-disease classification system.
This is an important development because symptomatic sporadic cavernoma is distinct from both familial (genetic) cavernoma and cavernomas that are discovered incidentally without causing symptoms.
Sporadic cases are defined by having no family history and no known genetic basis for the cavernoma. Typically, affected individuals have only one cavernoma.
In some specific situations, cavernomas have been associated with previous radiation treatment, particularly higher-dose radiation treatment to the brain or spine used for certain cancers. This is considered uncommon, and in many sporadic cases the reason a cavernoma develops is still not known.
The genetic (familial) form of cavernoma is caused by a mutation, or change, in one of three different genes: CCM1, CCM2, or CCM3. Familial cerebral cavernous malformation is recognised by Orphanet as a rare disease.
Less than 20% of people with a cavernoma have the genetic form.
Once a cavernoma has had one haemorrhage, the risk of bleeding again is significantly greater, although this risk varies widely between individuals and cannot be predicted with certainty.