Cavernoma Society

A UK-based charity supporting those affected by cavernoma

What is a Cavernoma?


A cavernoma is a lesion made up of a cluster of abnormal dilated blood vessels most commonly found in the brain or spine.  A typical cavernoma looks like a raspberry. It's filled with blood that flows slowly through vessels that look like 'caverns'. It is usually less than 3 centimetres in size. It can be genetic or incidental.

How will I know I have a Cavernoma?


Approximately 1 in 600 people have a cavernoma. Cavernomas are usually not detected until they become symptomatic /bleed. Those that aren't symptomatic are usually detected after the patient has a routine MRI scan for another condition.

How are Cavernomas detected?


A Cavernoma can be detected by CT or MRI scan. Those with symptomatic Cavernoma are usually diagnosed after a bleed.

What symptoms could I have?


Patients with Cavernoma often report symptoms such as; stroke, epilepsy, migraines, nerve pain, problems with vision and speech, problems with balance, problems with coordination, and sometimes, issues with mobility. 

Is my Cavernoma cancerous?


It is uncommon for a Cavernoma to be cancerous. Cavernomas are usually benign.

What is the treatment for Cavernoma?


Most neurosurgeons will take a 'watch and wait' approach with Cavernoma patients, unless there's a real need for surgery. Craniotomy is the main treatment for Cavernoma, however, Gamma Knife Radiotherapy is becoming more and more popular. 

Become a member and make a difference

About Us

Our Team


The Cavernoma Society was founded by a team who are passionate about making a difference to the cavernoma community. Whether you are a patient, family member, friend, carer, or medical professional - you are in the right place. 

A cavernoma is made up of a cluster of abnormal blood vessels and is most commonly found in the brain or spine. 1 in 600 people in the UK are thought to have a cavernoma without even knowing it! However, when cavernomas become symptomatic and seep blood into surrounding brain and spinal tissue, they can cause strokes, seizures, or can even be life-threatening. 


Our founding team of trustees have either had a cavernoma or know someone who has had one, so we all have first-hand experience of the condition and what it entails. We want to work together with medical professionals in order to improve treatment, care, and research into cavernoma. We also want to support all of you, as we know how difficult the cavernoma journey can be! 


We will provide emotional support, practical help in the community, information, and advice.

Our team of trustees and part-time volunteers are committed to helping others. We take our convictions and turn them into action. Think you would be a good fit? See our form below for more information!

Our History


Seeing a need for emotional support and research in this area, we formed the Cavernoma Society to provide practical solutions. We are at the beginning of our journey*, but we're already looking at how we can make a difference to you! 

Our Mission


We will focus on making the maximum positive effort for our community. Our members and volunteers provide the momentum that helps us affect change. Our aim is to provide solutions that make a long-lasting difference.