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Looking for support and information on Acoustic Neuroma and Meningioma? We have some really helpful resources below, including definitions, management and a comprehensive directory.

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AMNET Meetings

AMNET holds twice yearly meetings, usually at Addenbrooke’s Hospital. With membership you'll receive notifications to register your interest in attending and you'll find the summaries and slideshows from each meeting in the members area of our website.

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AMNET News

Our newsletter, AMNET News, is sent straight to your inbox or through your postbox at least twice a year. It keeps you up-to-date with AMNET news, events, information, useful tips and often includes letters and editorials from members and professionals alike. 

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Recordings

We've held meetings and talks with professionals, consultants and researchers of Acoustic Neuroma an Meningioma, and host recordings of these talks in the members area of our website, available to view whenever suits you. 

Want more resources?

Becoming an AMNET member gives you access to many benefits, including further resources on Acoustic Neuroma and Meningioma, including literature and presentations. It also offers support and and community through our private, members-only Facebook group. Take a look at what is included in our membership below:

Definitions & Management

The information provided here is designed to be a brief introduction to the causes, symptoms and management of Acoustic Neuromas (Vestibular Schwannomas) and other skull base tumours. We are recommending a number of UK sources of detailed and up to date information on skull base tumours such as Acoustic Neuroma. However, please always speak to your doctor about any questions you have.

Definitions & Management

What is an acoustic neuroma (Vestibular Schwannoma)?

An Acoustic Neuroma (Vestibular Schwannoma) is one of a group of tumours commonly known as skull base tumours. These tumours are usually benign so do not spread to other parts of the body, but if they grow too large, or depending on the location of the tumour, they will need treatment. Acoustic Neuromas (Vestibular Schwannomas) develop from the Schwann cells which form the myelin sheath that wraps  around the axons of nerve cells. The axons carry messages from the nerves to the brain. The tumour grows into the canal which  carries the axons of three nerves, the auditory nerve, the vestibular (balance) nerve and the facial nerve, between the ear and the brain (as illustrated in the picture above). As the tumour grows it puts pressure on these nerves which can lead to symptoms which may include:

  • Loss of hearing

  • Problems with balance

  • Facial weakness

 

Acoustic Neuromas are not common, they account for about 5% of all brain tumours, and they usually grow very slowly. The tumour may have been present for a number of years before any symptoms are noticed. Other tumours such as Meningiomas and facial nerve tumours may also arise in the skull base and may present with similar symptoms.

More information on Acoustic Neuromas and other skull base tumours:

BANA (British Acoustic Neuroma Association) ‘What is an Acoustic Neuroma (Vestibular Schwannoma)?’
Patient UK (Acoustic Neuroma)
Facial Palsy UK (Facial Nerve Tumour)

What is a Meningioma?

A Meningioma is a tumour of the meninges, which is the name given to the protective lining of the brain and the spinal cord. Meningiomas are almost always benign and do not spread. They can occur in any part of the brain or spinal cord but the commonest sites are at the surface of the brain, either over the top or at the skull base. Meningiomas in the skull base may have similar symptoms to Acoustic Neuromas and will probably require a similar management plan.

More information on Meningiomas:

Meningioma UK “What is a Meningioma?”
Sheffield Teaching Hospital – Information for Patients, Family and Carers: Meningioma 

What are the treatment options for Acoustic Neuroma (Vestibular Schwannoma) and other skull base tumours?

​There are three approaches to the management of skull base tumours:

  • 'Watch, Wait and Rescan’ (monitoring) – this may be suggested following diagnosis if the tumour is small.

  • Surgery

  • Radiotherapy or radio-surgery

You will be involved in the decision about which treatment would be most appropriate for you.

You will find up to date information about all the treatment options on the following websites:

  • British Acoustic Neuroma Association (Treatment options)

  • NHS Choices – Acoustic neuroma (Vestibular Schwannoma) Treatment

  • Patient UK (Acoustic Neuroma) Leaflet

  • Radiosurgery: What is Gamma Knife?  National Centre for Stereotactic Surgery (Sheffield Teaching Hospitals NHS Foundation Trust)

Preparing for your appointment:

Following a diagnosis such as Acoustic Neuroma you will be referred to a specialist consultant. To get the most out of the appointment it is a good idea to prepare yourself well. This helps both you and the specialist you are seeing.

 

Here are some things you might like to think about and note down before you go:

What do you want to tell the doctor?

  • What are your symptoms?

  • When did they start?

  • What impact are they having on your life?

  • What medication are you taking?

What do you want to ask the doctor?

  • What does the diagnosis mean?

  • What treatments are available?

  • What are the pros and cons of the different treatments?

  • What will happen if I don’t have treatment?

  • Where can I get more information?

  • Is there any support available?

Do you want to take someone with you?

  • It may be important for a member of your close family or a friend to fully understand what is happening

  • Another person may pick up more from the consultation or ask the questions you have not thought of

  • the person who is with you may remember more than you do

 

During the appointment you may find it difficult to take on board all that you are told. We suggest that you ask for written information and to find out who you can contact if you have more questions.

Making your decision:

Once given a diagnosis and possibly a choice of management options you may then be faced with making a decision about treatment or management of your skull base tumour. The decision will be a shared decision with the clinical team who will give you information about the various choices and sometimes make recommendations. However, often it is up to you to decide the best choice for you and your family. Hopefully this guide can help you with that process.

This decision may feel very difficult especially if there is not obvious choice.

 

These are some things that can help with the decision making process:

 

Do you need more information?

  • You can ask the clinical team that are looking after you for more information.

  • Search for information on the internet – try to stay with reputable sources – we have provided some reliable sources on this website.

 

Who can help me?

  • Talk to the clinical team

  • Talk to family and friends

  • Talk to people who have made the decision before you – this maybe via a website like ours and we also offer the opportunity to speak with one of our members on the phone.

  • However remember that everyone’s experience will be different

 

If you are still not sure it may be helpful to write it all down:

  • You can make a list of the options available to you and the reasons to choose a particular option or to avoid that option. You can then identify the ones you feel are most likely to happen and how important each of these are to you.

  • For example if it is important to you that the tumour is removed then this will be a high score on the reasons to choose surgery,

  • Whereas if the idea of surgery frightens you, fear of the operation will score high on the reasons to avoid surgery.

  • You may then be able to identify the options with the choices that matter most to you and are most likely to happen, and those that you most wish to avoid.

  • Download this chart to help you (LINK HAS EXPIRED)

Your final decision will be made in conjunction with the clinical team looking after you, but it is important that you are clear about your options and what is important for you. 

Directory

The AMNET Directory

You'll find below a list of useful links to contacts and resources in regards to management and support for Acoustic Neuroma and Meningioma and other skull base tumours. For any further help don't hesitate to reach out using our contact form.

AMNET

www.amnet-charity.org.uk

Email: contact@amnet-charity.org.uk

Tel: 01953 860692

The Old School House, The Green,

Old Buckenham, Norfolk, NR17 1RR


British Acoustic Neuroma Association

www.bana-uk.com

Email: admin@bana-uk.com

Tel: 01246 550011

Tapton Park Innovation Centre, Brimington Road, Tapton, Chesterfield, Derbyshire, S41 OTZ.


The Brain Tumour Charity

www.thebraintumourcharity.org
Support and information 0800 800 0004

 

Cambridgeshire Deaf Association
www.cambsdeaf.org

Email:  office@cambsdeaf.org

Tel: 01223 246237
8 Romsey Terrace, Cambridge, CB1 3NH

Cambs Tinnitus Support Group
www.cambstsg.com/  

 

Changing Faces

www.changingfaces.org.uk

Email: support@changingfaces.org.uk

Tel: 0300 012 0275

 

Facial Palsy UK

www.facialpalsy.org.uk

Email: info@facialpalsy.org.uk

Tel: 0300 030 9333

Hidden Disability Sunflower
www.hiddendisabilitiesstore.com

 

Royal National Institute for Deaf People (RNID)

www.actiononhearingloss.org.uk

Email: informationline@hearingloss.org.uk

Tel: 0808 808 0123 

Textline: 0808 808 9000


Tinnitus UK

www.tinnitus.org.uk

Email: info@tinnitus.org.uk

Freephone Helpline: 0800 018 0527 

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