About Cavernomas
What is a Cavernoma?
A cavernoma looks like a blackberry. It is made up of abnormal blood vessels. Cavernomas can measure from a few millimetres to several centimetres. A cavernoma can get bigger, but this growth is not cancerous, and it does not spread to other parts of the body.
Sometimes the cells lining the blood vessels ooze small amounts of blood (inwards) within the cavernoma, or (outwards) into surrounding tissue. The risk of re-bleeding varies widely, and is difficult to predict accurately.
Frequency
1 person in 600, in the UK, has a brain cavernoma without symptoms. This equates to roughly 90,000 people - enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
People who experience symptoms are much rarer. An ongoing study based on the entire population of Scotland, found that each year, 1 person out of 400,000 is diagnosed with a symptomatic brain cavernoma.
There is likely to be a genetic cause in less than 50% of people with a cavernoma.
Symptoms
The type, severity, combination and duration of symptoms vary, depending on the location of the cavernoma.
Single or multiple cavernomas near the surface of the 'hemispheres' or 'lobes' in the brain can cause epileptic seizures.
Some common symptoms of single or multiple cavernomas may include headaches, dizziness, weakness, numbness, tiredness, memory and concentration difficulties.
Examples of Investigations
MRI scan - Magnetic Resonance Imaging. It is important that specific scan sequences are used: "T2-weighted" and "gradient echo".
CT scan - Computerised Tomography cannot be relied upon to reveal cavernomas.
Angiography - often angiography is carried out. This investigation cannot be relied upon to show a cavernoma.
Blood tests and genetic testing - available through a specialist doctor called a Geneticist.
Examples of Treatments and Management
Medications - need to be taken by some people.
Surgery - also called neurosurgery and spinal neurosurgery.
Stereotactic radiotherapy - a course of radiation therapy.
Stereotactic radiosurgery - a single concentrated dose of radiation therapy.
Gamma Knife and CyberKnife - a non-invasive type of stereotactic radiosurgery. It is unknown how well either single or multiple cavernomas respond to this form of treatment.
'Wait-and-watch' approach - may include periodic MRI scans.
Genetic counselling - available for some individuals and their families.
Information Booklets
While people with either one cavernoma, or multiple cavernomas have things in common, each person remains unique. This should be taken into account for each individual who may require both lifelong support and medical attention.
CA UK has produced three information booklets to help people learn about, understand and cope with the condition. The booklets, available as a single booklet, dual or triple pack, are entitled:-
Symptomatic cavernomas
Incidental cavernomas
The genetics of cavernomas
These booklets, describe cavernomas, their frequency, symptoms, how the condition is investigated, as well as surgical and nonsurgical interventions. The genetics booklet also discusses the genetic implications for those who may inherit the condition.
These information sheets and booklets are available from:-
CA UK website
Neurosurgical and Neurology departments
Geneticists and genetic councillors