Haemangioblastoma

Haemangioblastomas are rare non cancerous (benign) brain tumours. They start in the cells that line the blood vessels in the brain, spinal cord and brain stem. They usually grow slowly over some years.

Most haemangioblastomas start in the back of the brain (cerebellum).

Find out more about the brain and spinal cord

Haemangioblastomas don’t usually spread to other parts of the brain. The symptoms you have depend on where the tumour is in the brain or spinal cord. Symptoms might include:

• problems with walking, balance, speech and coordination

• a build up of brain fluid (cerebrospinal fluid) which can cause headaches and feeling sick

Von Hippel-Lindau syndrome

Some haemangioblastomas happen because of a rare inherited syndrome called von Hippel-Lindau syndrome. People with this syndrome have a higher risk of developing different types of tumours, including haemangioblastoma.

Find out more about the factors that increase your risk of developing a brain tumour

How common it is

Haemangioblastomas are rare tumours. They are a type of tumour called haemangiomas. Around 1 out of every 100 brain tumours (around 1%) diagnosed are haemangiomas. Around 12,300 people are diagnosed with a brain tumour in the UK each year. This includes tumours in other parts of the central nervous system as well.

What tests will I have?

To find out what is causing your symptoms your doctor will arrange for you to have some tests. The tests you might have include:

• MRI scan or CT scan

• blood tests

• a test of your neurological system (neurological examination) 

• a scan to look at the blood vessels in the brain (brain angiogram)

• a biopsy

As well as finding out whether you have a tumour, the tests check the size of the tumour and its location. This helps your doctor plan your treatment.

We have more information about the tests you might have to diagnose a brain tumour

Coping with haemangioblastoma

Coping with a diagnosis of a brain tumour can be difficult, both practically and emotionally. It can be especially difficult when you have a rare tumour. Being well informed about the type of tumour you have, and its treatment can make it easier to cope.  

Find out what you can do, who can help and how to cope with a brain tumour