Close navigation

What is an ependymoma?

Ependymomas are the third most common type of childhood brain tumour. The average age of diagnosis is five years old.

If your child or a child you know has recently been diagnosed with an ependymoma, you may be worried about what this means. This is a natural way to feel. Our Support and Information team can help answer any questions you may have or provide a listening ear if you need one.

What is an ependymoma?

Ependymomas are a type of brain tumour that are formed from the ependymal cells, the brain cells that produce cerebrospinal fluid (CSF). You may sometimes hear an ependymoma referred to as a glioma.

Ependymomas are usually:

  • slow growing
  • less likely to spread.

While ependymomas can develop at any age, the average age of diagnosis is 5 years old and at least a quarter of diagnoses happen before the age of 2.

Most childhood ependymomas are found in the hindbrain (also called the posterior fossa), which controls functions like balance, movement, breathing and blood pressure.

There are four different types of ependymoma, so you might hear your child’s doctor call the brain tumour by a more specific name.

Grade 1 ependymomas

Subependymomas are grade 1 ependymomas that are relatively uncommon in children and appear most often near a ventricle.

Myxopapillary ependymoms are grade 1 ependymomas that are also relatively uncommon in children and usually develop in the lower part of the spinal column.

Grade 2 ependymomas

These are the most common type of ependymoma tumour and usually appear close to, or in, a ventricle in the hindbrain.

Grade 3 ependymomas

Also known as anaplastic ependymomas, these are the fastest growing ependymal tumour and also commonly grow in the hindbrain.

Track how your child feels

If your child is diagnosed with an ependymoma, it can be overwhelming. Use BRIAN’s quality-of-life tracker to monitor how they feel and the symptoms they have. Then share this with their healthcare team to show what they most need support with.

Track how your child feels

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.

Find out more

What are the symptoms of an ependymoma?

Most child ependymomas develop along the ventricle in the hindbrain known as the fourth ventricle. Depending on where the tumour is located, your child might have one or more of the following symptoms:

  • Their head seeming to be twisted or tilted (known as torticollis or wry neck)
  • Loss of balance (known as ataxia)
  • Problems speaking (known as dysarthria)
  • Difficulty swallowing (known as dysphagia)
  • Making overly clumsy movements (known as dysmetria).

They may also experience some of the general symptoms of childhood brain tumours.

Find out more

Back to the top

How are ependymomas treated?

The first treatment your child is likely to have is surgery to remove as much of the tumour as possible. If the tumour is low grade and the surgeon is able to remove all the tumour, your child may not need any other treatment. 

If it's not possible to remove all the tumour or if the tumour is high grade, then surgery may be followed by radiotherapy or chemotherapy.

Find out more

Back to the top

What causes ependymomas?

Nothing you've done or could've avoiding doing would have stopped an ependymoma from growing.  

As with any brain tumour, we aren't sure why ependymomas begin to develop, although research is helping us to understand some of the risk factors involved.

Back to the top

How long can somebody live with an ependymoma?

This will depend on many factors, not just the grade, size and location of the tumour, but also your body's unique response to treatment and how healthy you are in general.

Ependymoma prognosis

Back to the top

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.

Jake explains brain tumours

Meet Jake! In this video he helps children to understand their brain tumour diagnosis in a comforting and reassuring way.

Molly's story

"When I was first diagnosed, the biggest feeling I experienced was relief. I finally felt as though the doctors were listening to me."

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)

support@thebraintumourcharity.org

Phone lines open Mon-Fri, 09:00-17:00

You can also join our active online community on Facebook - find out more about our groups.