Cavernoma

Cavernous angioma, cavernous haemangioma, or cerebral cavernous malformation (CCM)

What is cavernoma?

Cavernoma is a cluster of unusual blood vessels, measuring only a few centimetres, making it look like a raspberry. It can be found in the brain or spinal cord. It is not cancerous and does not spread to other parts of the body.
Up to 30% of people who have cavernoma have a 50% chance of inheriting it.

What causes cavernoma?

Cavernoma’s often occur by chance, there is no clear reason why cavernoma’s develop.

What are the symptoms of cavernoma?

  • Seizures (most common)
  • Haemorrhage
  • Headaches
  • Neurological deficits such as dizziness, slurred speech, double vision
  • Weakness, numbness, memory and concentration difficulties

The type and severity of the symptoms are dependent on where the cavernoma is located in the brain. You can experience these symptoms if the cavernoma presses on the brain and causes slight bleeding.

Are you affected by cavernoma?

Try to monitor and log your symptoms as you may miss a haemorrhage.

If symptoms get worse, your doctor may offer an MRI scan to understand what’s happening and why.

Treatment for cavernomas depends on the person, the size/location/symptoms of the cavernoma itself. Headaches and migraines can be treated with medicines whereas invasive treatments could be offered to reduce the risk of a brain bleed.

If you’re affected by cavernoma, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with cavernoma, emotional support such as counselling, phone befriending and group therapy and social activities to people with cavernoma from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0800 008 6417

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone affected by Cavernoma

Make sure you look after yourself as much as you look after them. If you need any assistance, or just need a friendly chat, we have counsellors who can help.

We support carers, friends and family too

Are you a carer for or relative of someone with cavernoma? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including cavernoma, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The library at The Brain Charity has a range of resources on this condition and on a wide range of disability-related issues.

Support groups

At The Brain Charity

The Cavernoma Society

Website: cavernomasociety.org.uk
Tel: 0330 122 4470
Email: hello@cavernomasociety.org.uk

Cavernoma Alliance UK (CAUK)

Other charities

Cavernoma Alliance UK (CAUK)

Tel: 01305 213 876
Website: www.cavernoma.org.uk

CaverFamilies events and meetings are exclusively for young people who have, or have had, cavernoma; their parents and siblings.

The Cavernoma Society

CaverFamilies

Genetic Alliance UK