Have you been diagnosed with a brain tumour? Order your free information pack.

Haemangioblastoma

Haemangioblastomas are tumours that grow from blood vessel cells. They are low grade, very slow growing and don’t spread to other parts of the body, though rarely some people have multiple tumours at the same time. Around 1 out of every 100 brain tumours that are diagnosed is a haemangioblastoma.

On this page, we’ll cover:

Get support

It’s normal to feel shocked if you or someone you know has been diagnosed with an astrocytoma. Our Support Team can answer questions you have or provide a listening ear if you need one.

Get your free Information Pack

Our Brain Tumour Information Pack can help you better understand your diagnosis and feel confident talking to your medical team.

Get the BRIAN app

BRIAN is our trusted online app where you can track your experience, compare it with others who’ve been there and get the knowledge you need to make informed decisions.

What is a haemangioblastoma?

Haemangioblastoma is a slow growing brain tumour that is most common in people aged between 20 and 40.

It can appear anywhere in the brain, but it is more commonly found in the cerebellum. This the area involved in coordinating movement and balance. 

Other areas where it can occur include the brainstem, spinal cord, cerebral hemispheres, retina and peripheral nerves.

Because this type of tumour involves blood vessels it can lead to bleeding in the brain. Haemangioblastomas can also occur outside the central nervous system (CNS).

What are the causes of haemangioblastoma?

Most cases of haemangioblastoma are labelled as “sporadic”, meaning that they have no link with a specific genetic disease.

But, around a quarter of haemangioblastoma cases are directly linked to Von Hippel-Lindau syndrome.

This is a genetic condition which causes vascular abnormalities and increased risk of cancer in other parts of the body.

What are the symptoms of haemangioblastoma?

The symptoms of the tumour depend largely on its position within the brain. They are usually caused by the tumour creating pressure in the brain and/or hydrocephalus, which is the build-up of cerebrospinal fluid in the brain.

 People with haemangioblastoma might have some of the following symptoms:

  • Problems with walking, balance and coordination
  • Intense headaches due to hydrocephalus
  • Pain, numbness or incontinence if the tumour is in the spinal cord
  • Difficulty speaking

If the tumour is located in the brainstem there is more chance of symptoms being severe and needing emergency attention. This is because all the nerves going from the brain to the rest of the body pass through it. A rupture of a blood vessel will also require immediate medical attention.

The tumour also produces a hormone (called erythropoietin) that stimulates red blood cell production in the bone marrow. This can mean that some people can have a higher than normal number of red blood cells.

How are haemangioblastomas treated?

Haemangioblastomas are usually treated by complete surgical removal of the tumour. Most people will not have any other symptoms if the tumour is completely excised in its early stages.

But, tumours associated with Von Hippel-Lindau syndrome can be multiple and are more likely to recur after surgery.

Four booklets from The Brain Tumour Charity information pack spread out on a wooden table

Get your free Information Pack

If you or someone you love has been diagnosed with a brain tumour and you don’t know which way to turn, start with our free Information Pack.

If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:

Support and Information Services

0808 800 0004 Free from landlines and mobiles
Phone lines open Mon-Fri, 09:00-17:00

In this section

Check the signs and symptoms of a brain tumour

Get support

If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.

Share your experiences and help create change

By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.