AMNET Meeting 5th February 2022
AMNET held a very well attended interactive Zoom meeting on Saturday 5th February. In total around 40 people attended to engage in the interactive panel on the ‘Psychological and emotional impact of having an acoustic neuroma, adjusting to and coping with the condition’ led by Anna Packham, Derval McCormack and Saadia Choudhry, trainee clinical psychologists at Lancaster University. The psychologists led an interactive session exploring the experience of an Acoustic Neuroma diagnosis and its physical, emotional and psychological impact. Full report on the meeting is in the Spring 2022 issue of the AMNET newsletter. We would like to thank Anna, Derval and Saadia for giving us their time and knowledge to lead an enjoyable, interactive and useful session.
AMNET Meeting 27th November 2021
AMNET held on online Zoom conference on Saturday 27th November. It was well attended by around thirty five people. Patrick Axon Consultant Otologist, Hearing Implant & Skull Base Surgeon at Cambridge University Hospitals NHS Foundation Trust, presented an informative session on the management of vestibular schwannomas (acoustic neuroma) following an audit derived from the UK National Vestibular Schwannoma Registry over the period from 2013-2021. The UK National Vestibular Schwannoma Registry (VSR) is a national database for recording treatment information and outcomes on patients with vestibular schwannoma throughout the UK. It was established in 2012 within the Outcome Registry Intervention and Operation Network (ORION), a national healthcare informatics network, as a partnership between the University of Cambridge and the British Skullbase Society. Its purpose is to improve the quality of care provided for patients with vestibular schwannoma through monitoring of national practice. We thank Patrick for his time for updating us on the management of VS.
AMNET Meeting 19th June 2021
AMNET held an online meeting on Saturday 19th June. It was attended by around 20 people. We held our AGM and then listened to a talk by Sue Framlingham, an audiologist. Sue spoke about hearing loss and the importance of hearing as well as you are able. She described hearing aids available to help people with single sided deafness and answered a number of questions from the audience. We thank Sue for her time and the information she gave us.
AMNET Meeting 16th January 2021
AMNET held our first online meeting on Saturday 16th January. There were over 20 people there and it was really good to reconnect with members who we had not seen for a year. There was an opportunity for people to say hello to each other and then Heidi told us about some of the things that AMNET have been doing over the last year including the production of ‘Hearing Loss’ cards that members can use to help them in situations where they are finding it difficult to hear.
We were also very pleased to welcome Ali Parkes, one of our members who has written a novel based on her experiences of acoustic neuroma surgery and facial paralysis. Ali’s talk was interesting and very moving, as she told us why she had decided to write down her experiences and then turn them into novel. She described how she had been very young when she was diagnosed with a life threatening acoustic neuroma, only 31 with two young children. She underwent 16 hours of surgery and came out with a Grade 4 facial palsy. Writing about her experiences was a way to help her deal with the emotional side of her recovery and her desire to reach out to others in a similar situation led her to turn her story into a novel. If you would like to read the book it is called ‘No longer me’ by Ally Parkes and is available from Amazon in paperback or as an ebook.
The final speaker at the meeting was Frances Harris from Bridge Lipspeaking, who told us about her role as a lipspeaker helping people who are deaf or hard of hearing understand. You can find out more about what Frances does here: www.bridgelipspeaking.com
We are planning future online meetings and everyone will be welcome. Dates will be on the website.
The Addenbrooke’s Hospital Skull Base Website
The Addenbrooke’s Hospital Skull Base website is now up and running and can be found at https://www.cuh.org.uk/skull-base-service/about-skull-base-service. The website contains information about the service and the teams and there is also a section of ‘Information for Patients’ including a patient information leaflet and sources of support.
(Source: Health Education England, heeoe.hee.nhs.uk)