Cavernoma

Overview

A cavernoma (also called a cavernous malformation) is a cluster of abnormal, tiny blood vessels in the brain or spinal cord. It looks a bit like a raspberry and can be prone to leaking blood. For many people, it never causes problems.

A cavernoma is fairly rare. It is estimated to affect around 1 in 100 to 200 people, but many are never discovered because they don't cause any trouble.

A cavernoma can appear at any age, but it is most often diagnosed in adults between the ages of 20 and 50. Some people inherit a genetic tendency to develop them, while most have a single, isolated cavernoma with no family history.

Symptoms

Common symptoms

• No symptoms at all (very common)
• Seizures (fits or unusual body movements)
• Headaches, sometimes severe
• Focal neurological symptoms such as weakness, numbness, or difficulty speaking (similar to a stroke)
• Problems with balance or vision

Symptoms in children

• Seizures
• Headaches
• Delays in development or learning difficulties
• Stroke-like symptoms

Symptoms in older adults

• Gradual changes in memory or thinking
• Balance problems and falls
• Weakness or numbness on one side of the body
• Stroke-like symptoms

Causes

Main causes

• An abnormal collection of blood vessels that forms before birth or later in life
• Sometimes due to a change (mutation) in a gene, which can be inherited from a parent
• In some cases, linked to previous radiation therapy to the brain

Risk factors

• Family history of cavernomas
• Having a genetic condition such as familial cavernous malformation syndrome
• Having had radiation treatment to the head or neck

When to see a doctor

See a doctor urgently if:

• If you have any symptoms listed under emergency or urgent above, contact your local doctor or emergency services immediately
• If you have a seizure that lasts more than 5 minutes, call emergency services

Book a routine appointment if:

• If you have any new headaches, seizures, or neurological symptoms that are not emergencies, make an appointment with your GP
• If you have a known cavernoma and your symptoms are changing or becoming more frequent, arrange to see your specialist sooner rather than later

Diagnosis

Cavernomas are usually diagnosed with a magnetic resonance imaging (MRI) scan of the brain or spinal cord. An MRI produces detailed pictures and can show the characteristic pattern of a cavernoma. You may be referred to a neurologist (a doctor who specialises in the brain and nervous system) or a neurosurgeon for further advice.

Tests that may be done

• MRI scan (the most accurate test for cavernomas)
• Computerised tomography (CT) scan, if there is bleeding or an emergency
• Sometimes an angiogram (a test to look at blood vessels in detail)

What to expect at your appointment

If a cavernoma is found, you will be asked about your symptoms and family history. You may have further scans to check its size and position. Your specialist will explain what the finding means for you and discuss whether you need regular check-ups or any treatment.

Treatment

The best approach depends on whether your cavernoma has bled, caused seizures, or is in a location that puts important brain functions at risk. Many cavernomas are simply watched with regular MRI scans. If treatment is needed, it may involve surgery or some other options — your specialist will guide you through the risks and benefits.

Self-care at home

• Keep a note of any new or changing symptoms and share these with your healthcare team
• Avoid heavy lifting or straining if your doctor has advised this
• Don't take any blood-thinning medicines (including over-the-counter options) without first checking with your doctor
• Manage stress with relaxation techniques or talking therapy

Medical treatments

For people who have seizures, doctors may prescribe medication to help stop or reduce them. Medications to control blood pressure may also be used if needed. There are no drugs that cure or shrink a cavernoma, but many people never need any medicine.

When is surgery considered?

Surgery may be offered if the cavernoma has bled, is growing, or is pressing on a critical part of the brain or spinal cord. The goal of surgery is to remove the whole cavernoma and improve safety. In some situations, stereotactic radiosurgery (a type of focused radiation) may be used if surgery is too risky. The decision is individual, so talk through the options with your specialist.

Living with this condition

Most people with a cavernoma live full, active lives. The main worry is the risk of bleeding, but for many this risk is very low. You can learn what to watch for and stay in touch with your healthcare team as recommended.

Lifestyle tips

• Stay physically active with moderate exercise (walking, swimming, cycling) if you feel well
• Avoid smoking and limit alcohol to lower general health risks
• Get enough sleep to help your brain stay healthy
• Follow your doctor's advice about any restrictions on contact sports or strenuous activity

Diet and exercise

Eat a balanced diet with plenty of fruit, vegetables, whole grains, and lean protein. Regular, moderate physical activity is generally encouraged. If you have seizures, make sure you follow any advice about safe activities like swimming or bathing alone.

Mental health and emotional wellbeing

Being told you have a cavernoma can cause anxiety, even if you feel fine. It is normal to worry about symptoms, bleeding risk, or what the future holds. These feelings can affect your day-to-day life, so it is important to talk about them with your doctor or a counsellor. If you feel overwhelmed or have thoughts of self-harm, reach out to your local crisis line or call your local emergency number.

Prevention

There is no known way to prevent a cavernoma from forming, because it is usually a structural difference you are born with or develop later in life. You can reduce your risk of health problems by keeping your blood pressure healthy and avoiding head injuries. If you have a genetic form, genetic counselling can help you understand the condition and its risks.

Vaccines

No specific vaccines are recommended to prevent cavernoma. It is important to stay up-to-date with routine immunisations to protect your overall health.

Screening programmes

If you have a family history of cavernomas, your doctor may recommend an MRI scan to check for the condition, even if you have no symptoms. Screening is not usually offered to the general public.

Complications

If left untreated

• Bleeding (haemorrhage) inside the brain, which can cause stroke-like symptoms
• Recurrent bleeding events
• New or worsening seizures
• Focal neurological problems if the cavernoma presses on certain areas

Long-term outlook

The outlook is generally very good. Many cavernomas never bleed or cause symptoms, and even if you have had bleeding, treatment can prevent further problems. Research and modern imaging mean that doctors can monitor you closely and manage any issues that arise. You can live a long and fulfilling life with a cavernoma, often without needing any treatment.

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