Vestibular schwannomas are also called acoustic neuromas. They are benign brain tumours (not a cancer) that usually start in the nerve that connects the brain to the ear.
What is a vestibular schwannoma?
Vestibular schwannomas start in Schwann cells. These are fatty cells on the outside of nerves. Usually, vestibular schwannomas start in the Schwann cells on the outside of the vestibulocochlear nerve. The vestibulocochlear nerve connects the brain to the ear. It controls hearing and balance.
Vestibular schwannomas do not spread to other parts of the body. Because they grow slowly over some years, you don’t usually have symptoms for some time.
When you do have symptoms, they can be:
- hearing loss that usually affects one ear
- ringing and buzzing sounds in 1 or both ears (tinnitus)
- difficulty working out where sounds are coming from
- dizziness or vertigo
- numbness of the face (this usually happens in advanced tumours)
How common it is
Vestibular schwannomas are rare tumours. About 6 out of every 100 brain tumours (6%) are vestibular schwannomas. The average age of diagnosis is around 50 years old.
Rarely, vestibular schwannomas are caused by a genetic condition called neurofibromatosis. People with neurofibromatosis are often diagnosed at a much younger age. They usually develop tumours on both sides of the brain (bilateral).
What tests will I have?
You have tests to diagnose a vestibular schwannoma. Your doctor checks the size of the tumour and its location. This helps your doctor plan your treatment. The tests you might have include:
- hearing tests
- MRI scan
- CT scan
The treatment you need depends on:
- the size of the tumour
- the symptoms you have
- your age
- your quality of life
Treatment might be monitoring, surgery or radiotherapy. The team caring for you will talk to you about your treatment. They will consider the risk of further hearing loss as well as what you want.
For a very small vestibular schwannoma, you might not need treatment straight away. Your doctor may recommend monitoring the tumour with regular MRI scans. This is called watchful waiting. Many small tumours don’t grow. If your symptoms get worse, it might be a sign that the tumour is growing. You might need treatment with either surgery or radiotherapy.
You might have a MRI scan every 6 to 12 months.
A brain specialist surgeon (neurosurgeon) might remove all the tumour or just a part. This depends on where the tumour is. And whether it’s likely that you will be able to hear afterwards.
There are different types of surgery that you can have. A common type is removing the tumour through a hole in your skull. This is usually a small cut above your ear or behind your ear. Your neurosurgeon will discuss the options with you.
You might have side effects after the operation. The side effects can include:
- hearing loss
- infection of the membranes that surround the brain (meningitis)
- drooping of the face (facial palsy)
For small tumours, you may have stereotactic radiotherapy or radiosurgery. Both treatments target high doses of radiotherapy to the tumour.
You might have targeted radiotherapy alone, or after surgery if the surgeon was unable to completely remove the tumour.
You might have side effects such as hearing loss after targeted radiotherapy.
You have regular appointments with your doctor or nurse after treatment finishes. Your doctor examines you at each appointment. They ask how you are feeling, whether you have had any symptoms or side effects, and if you are worried about anything. You might also have MRI scans on some visits.
How often you have check ups depends on your individual situation.
Coping with vestibular schwannoma
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.
Research and clinical trials
Doctors are always trying to improve the diagnosis and treatment of brain tumours. As part of your treatment, your doctor might ask you to take part in a clinical trial. This might be to test a new treatment or look at different combinations of existing treatments.