Haemangioblastoma

A haemangioblastoma is a rare brain tumour that starts in the cells lining the blood (‘haem’) vessels in the brain and sometimes the spinal cord. It is a slow growing, benign tumour. People with a genetic condition called von Hippel-Lindau disease have a higher risk.

Symptoms may include headaches, vomiting, problems with coordination and balance, or jerky eye movements. When it’s in the spinal cord, it can cause back or neck pain.

To find out more about the tumour you will need different tests. You usually have a MRI scan or a CT scan and an angiogram which looks at the blood vessels in the brain.

Treatment depends on the size and position of the tumour and your health. Your specialist will talk to you about the best treatment plan for you and explain the benefits and disadvantages.

Surgery is usually the main treatment. Radiotherapy can be used instead of or after surgery. Your doctor may prescribe steroids to reduce symptoms. Treatments cause side effects. Your doctor will explain what to expect and how side effects can be managed.

Understanding brain tumours

The brain and spinal cord make up the central nervous system (CNS). The brain controls different functions of the body, including how we think, feel, learn and move. The spinal cord is made up of nerves that run down the middle of the back (spine). Messages between the brain and other parts of the body travel through the spinal cord.

A tumour can be benign (not cancer) or malignant (cancerous). A benign brain tumour can cause problems as it grows if it presses on surrounding tissue, but it can’t spread to other parts of the brain. A malignant tumour can cause problems by growing into nearby tissues and may spread to other parts of the CNS.

Side view of the structure of the brain
Side view of the structure of the brain

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We have more information about the brain and the different types of brain tumours.


Understanding haemangioblastomas

A haemangioblastoma develops in the very early cells that line the blood (haem) vessels in the brain or in the spinal cord. It is usually a slow-growing benign tumour. Haemangioblastomas usually start in the cerebellum and less commonly in the brain stem or spinal cord (see diagram).


Causes of haemangioblastomas

For most people the cause of haemangioblastoma is not known. People with a rare hereditary (genetic) condition known as von Hippel-Lindau disease (VHL) have a greater risk. About a quarter of haemangioblastomas are linked to VHL. In these cases, the haemangioblastoma usually affects younger people and there’s often more than one tumour.

We have more information about brain tumours and genetics.


Symptoms of haemangioblastoma

Haemangioblastomas are slow-growing tumours, and symptoms may develop slowly.

The first symptoms may be due to increased pressure in the brain (called raised intracranial pressure). This can be because of swelling around the tumour, or a build-up of cerebrospinal fluid (CSF) that surrounds and protects the brain and spinal cord. The symptoms of raised intracranial pressure are headaches, sickness (vomiting), problems with balance and with sight, and being confused.

Some other possible symptoms are:

  • changes in mood and personality
  • problems with coordination and balance
  • unusual or jerky eye movements.

If the tumour is in the spinal cord, it may cause symptoms such as back or neck pain, and numbness or weakness in the arms or legs.


Tests for haemangioblastoma

Your doctors need to find out as much as possible about the type, position and size of the tumour, so they can plan the best treatment for you. You will have a number of different tests.

The doctor will examine you and do checks on your nervous system. This includes checking your reflexes and the power and feeling in your arms and legs. They also shine a light at the back of your eyes to check if the optic nerve is swollen, which can be a sign of raised pressure in the brain. Your doctor will ask some questions to check your reasoning and memory. You will also have blood tests taken to check your general health and to see how well your kidneys and liver are working.

You will have a CT or MRI scan to find the exact position and size of the tumour.


CT scan

A CT (computerised tomography) scan uses x-rays to build a three-dimensional picture of the inside of the body. You may be given either a drink or injection of dye. This is to make certain areas of the body show up more clearly. This scan takes around 30 minutes and is painless. We have more detailed information about having a CT scan.


MRI scan

This scan uses magnetism to build up a detailed picture of areas of your body. You may be given an injection of dye, into a vein, to improve the images from the scan. This test is painless and will take around 30 minutes. We have more detailed information about having an MRI scan.


Angiogram

This test uses an injection of a dye and x-rays to see the blood vessels in the brain that supply the tumour. The dye is injected through a thin, flexible tube (catheter) that is inserted into an artery in the groin, arm or neck. A series of x-rays are taken. Angiograms can be done as part of a CT or MRI scan.

Your nurse or doctor will explain this test in more detail.


Treatment for haemangioblastoma

The main treatments for haemangioblastomas are surgery and radiotherapy. Your treatment will depend on the size and position of the tumour, your symptoms and general health.

Your specialist doctor and nurse will explain the aims of your treatment and what it involves. They will talk to you about treatment benefits and disadvantages. They will also explain the risks and side effects.

Deciding on the treatments that are right for you is a decision you make in partnership with your doctor. Make sure you have enough information and time to help you make maketreatment decisions.

If the pressure in the brain is raised due to a build-up of cerebral spinal fluid (CSF), you may be given drugs called steroids to bring it down. Some people may have an operation to put a tube (shunt) into the brain to drain off the extra fluid before treatment starts.


Surgery for haemangioblastoma

Where possible, surgery is the main treatment for haemangioblastoma. In most cases, they are completely removed with surgery.

Your surgeon will explain what the operation will involve. They will talk to you about the possible complications and risks.

It can take a while to recover after surgery so it’s important to take good care of yourself. Get plenty of rest, try to eat well and follow the advice given by your surgeon and specialist nurse.

Some people may need extra support to help with their recovery. This may be from a physiotherapist who can help you to improve your balance, walking or strength. Occupational therapists can provide equipment and help you be more independent.

Other services such as speech therapy or psychological support are also available.

Sometimes an operation is not possible. This may be because the position of the tumour makes it too difficult to reach and surgery would not be safe. For example, when the tumour is in the brain stem, radiotherapy can be used instead.


Radiotherapy for haemangioblastoma

Radiotherapy treatment uses high energy x-rays to destroy the cancer cells. It may be used if surgery is not possible, or after surgery if it was not possible to remove the tumour completely.

Newer methods of radiotherapy used for haemangioblastoma include stereotactic radiotherapy. Targeted beams of radiotherapy are given from different angles and cross at the point of the tumour. This allows larger doses of to be given precisely to the tumour and very low doses to the surrounding tissues. Stereotactic radiotherapy can be given as individual sessions over a number of weeks.

This type of radiotherapy is more suitable for small tumours.


Treatments to control symptoms

Steroids are drugs that help to reduce the swelling around a tumour. You may have them to treat raised pressure in the brain or after surgery or radiotherapy. Some of the side effects of include: indigestion, weight gain, restlessness, agitation and sleep disturbance. Let your doctor or nurse know if these are causing problems or you notice any other effects. Taking steroids with food can help reduce indigestion.

If you have seizures (fits) you will be given drugs called anticonvulsants to help prevent them.

It’s very important to take these drugs exactly as your specialist doctor has prescribed them.


Driving

You may not be allowed to drive for a period of time, depending on the treatment you have had and whether you have had any seizures (fits). Although this can be upsetting it’s important to follow the advice you are given. Your doctor will ask you to contact the Driver & Vehicle Licensing Agency (DVLA). It is your responsibility to contact the DVLA. Your doctor or nurse will explain what you need to do.

You can contact the DVLA by phone on or at www.gov.uk/driving-medical-conditions.


Back to Types of brain tumour

Acoustic neuromas

An acoustic neuroma is a of brain tumour of the hearing nerve. It is sometimes called a vestibular schwannoma.

Astrocytomas

Astrocytomas, also known as astrocytic tumours, are a type of brain tumour.

CNS lymphoma

Most lymphomas start in lymphatic organs. But CNS lymphoma starts in the central nervous system.

Ependymoma

An ependymoma is a rare type of brain tumour.

Medulloblastoma

A medulloblastoma is a rare form of brain tumour.

Meningioma

A meningioma is a brain tumour that starts in tissues called the meninges that protect the brain. Most are benign.

Mixed gliomas

Mixed gliomas are a type of brain tumour that contains different types of glial cells.

Oligodendroglioma

An oligodendroglioma is a type of brain tumour that starts in the cells that cover nerve cells.

Pineal region tumours

Pineal-region tumours develop in the area of the pineal gland in the brain. They can be benign or malignant.

Pituitary tumours

Pituitary tumours start in the pituitary gland, which is at the base of the brain. They are usually benign.