Acoustic neuroma community hub
When you are diagnosed with an Acoustic Neuroma, having access to information that is relevant, reliable and helpful is incredibly important.
From speaking to our community, we know that many of you have dedicated lots of time to doing your own research on different topics related to an Acoustic Neuroma brain tumour diagnosis. This could include looking at treatment options, support services and services to help with symptom management.
On this page, you will find links to the information you need to feel in control, well resourced and less alone.
Coaching with brainstrust
Coaching begins with questions; we ask you what you need and what you want to achieve. It’s about collaborating with you, listening to you actively, and helping you build up a toolkit of skills to achieve your goals. With coaching, you focus on specific, definable issues with the intention of creating practical solutions that work for you.
Use our Thrive platform to get in-depth, on-going coaching support from our specialist support team. We can help you gain control of your situation to live the best life you can.
Click the button below to visit our ‘Thrive’ page and begin your coaching journey. Alternatively you can call 01983 292 405 to talk to a support specialist about how coaching could help you.
Acoustic neuroma community resources
The information on this page has been put together by our community for our community of people living with an Acoustic Neuroma. It has been designed to signpost you to support and services that other members of our community have found helpful.
We plan for this page to grow over time, so if you have anything that you would like to share on here, please get in touch with Jodie.
Katie's resources
The following information has been put together by Katie. Katie was diagnosed with an Acoustic Neuroma in 2017 and had surgery to remove it in February 2019 whilst she was living in Australia. Katie now lives back in the UK and is passionate about sharing her experience and knowledge to help others going through a similar experience.
Articles
‘Advocating for carers: a qualitative study exploring the needs of UK carers of patients with an acoustic neuroma’ is a study conducted by Katie, who completed an MSc in Health Pyschology.
If you would like a summary of the paper, click here.
‘The benefits of a clinic visit: how I connected course learning, personal experiences and observing a professional’ is an article written by Katie during her MSc studies on her experience of a clinic visit.
Podcasts
Click here to listen to Katie sharing her experience of her diagnosis and surgery with her former personal trainer.
Click here to listen to Katie sharing her experience with Ryan West who created the ‘Revealing Healing’ podcast.
More helpful information
Following her surgery, Katie was diagnosed with grade 6 House-Brackman facial paralysis which resulted in her not being able to close her eyelids. Katie took the time to research options into managing this and things that may help, such as eyelid weights.
Click this link to read details of the research that Katie put together on eyelid weights.
Our meetup community
Each month, we run a virtual meetup group for people with an Acoustic Neuroma. There is no agenda- it is a chance to chat with people who understand. Below you will find information that has been shared in these groups that you may find helpful for your own situation.
We believe there is great value in having conversations with people going through a similar experience. If you are looking to speak to other people with an Acoustic Neuroma, come along to our monthly virtual meetup. We meet every month on the second Friday of the month over Zoom at 1pm. Keep an eye on our Events page for details of our meetups.
Lip reading classes
You can find out about lip reading classes, what they involve and how to join on the hearing link. Click here to find out more.
Supported exercise
LEGS run supported exercise classes for people with neurological conditions. Click here to find out more.
Vestibular physiotherapy
To find out what vestibular physiotherapy is and how to access it, click here.
Further support and research
Head to our PRIME page to find out more and get involved in vital clinical research.
If you have been affected by a brain tumour diagnosis, please reach out to us by calling 01983 292 405, visit our support area or email hello@brainstrust.org.uk
Acoustic Neuroma support, information and resources
A brain tumour diagnosis affects many areas of our lives and brings with it complex challenges. Things may never be the same as they were before, but brainstrust can help you to live well with a brain tumour, so you can have your best possible day – whatever that looks like for you.
We’re here to help you be in control of your care, so that you feel involved, supported, and confident that the choices you make are the right ones for you. Because when you feel all of these things you are more than a patient. You are a person. We can help you get back to being you.
brainstrust resources
The following list of brainstrust resource cover a range of topics and have been created in consultation with the community and experts in the field so that they provide you with the information need to feel well-resourced and in control.
All of our resources are free to download from our downloads and resources page. As well as the resources sign-posted below, on this page you will also find our Know How resources which cover a wide range of topics from how to have difficult conversations all the way through to the practicalities of driving with a brain tumour.
Patient guides
Acoustic neuroma patient and caregiver stories
Hearing from others who know what it’s like to receive and Acoustic Neuroma diagnosis, or know what it’s like to love someone with a diagnosis, may help you feel less alone. On this page we’re collecting your Acoustic Neuroma stories, as written by you so that the community has a space where they know they are not alone.
If you would like to share your story, please speak to your support specialist.
Lin's story
Lin from Kent was diagnosed with an Acoustic Neuroma in September 2020. Nearly two years on, Lin shares her story and experiences of life with an Acoustic Neuroma following recent radiosurgery.
Find Out More
Helen's story
Helen is 51 and married with two boys aged 21 & 15 living in Staffordshire. She loves the outdoors & spending time in green spaces. In 2020, Helen was diagnosed with an Acoustic Neuroma, and is sharing her experience of living with an Acoustic Neuroma.
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Andrew's story
Andrew received an Acoustic neuroma diagnosis at 40 and underwent surgery in 2017. It was upon returning to work that Andrew realised he needed support as fatigue proved incredibly hard to deal with.
Find Out More
Help fund our mission
decrease in loneliness for people we support.
*See our impact report for a full break down of our impact
Just £5 a month could help us host our monthly Acoustic Neuroma meet up helping us connect more people with others who understand.