
All you need to know about cavernoma, so you never have to feel alone!
UK charity supporting those affected by cavernoma
All you need to know about cavernoma, so you never have to feel alone!
UK charity supporting those affected by cavernoma

All you need to know about cavernoma, so you never have to feel alone!
All you need to know about cavernoma, so you never have to feel alone!
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The Cavernoma Society was created by those affected by cavernoma, for those affected by cavernoma. Our mission is to help and support members through their cavernoma journey so that they never have to feel alone. Whether you're a patient, family member, or carer, we provide counselling, therapeutic retreats, support groups, yoga, pilates, and meditation classes, information, and support with benefits. Take a look at our website and get in touch - we'd love to hear from you!
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.
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.
A Cavernoma can be detected by CT or MRI scan. Those with symptomatic Cavernoma are usually diagnosed after a bleed.
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.
It is uncommon for a Cavernoma to be cancerous. Cavernomas are usually benign.
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.
The Cavernoma Society was founded by a team who are passionate about making a difference to the cavernoma community.
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.
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!
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.
Copyright © 2018 Cavernoma Society - All Rights Reserved.
Registered Charity number: 1184406