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Join todayWhat 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.
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.
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 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.
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.
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.
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.