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.
On the 1st July 2020 it was BANA Awareness Day. To raise awareness of acoustic neuroma BANA held 3 webinars over 3 days.
Below are the links for the three webinars that coincide with our AN Awareness Day. You will need the password to access the talk. You should be able to access from these links or copy and paste into your browser. Please remember you are not accessing Zoom you are seeing recordings from Zoom.
Management of Facial Palsy
https://us02web.zoom.us/rec/share/2MNFHbTJ6WhJabP8zR78dKB5ILz3aaa81SdK-vZbmR4-ROstMgNzE6cSaiNX8x75?startTime=1593772863000 Password: 2k$0&+!#
Management of AN in Covid-19 Pandemic
https://us02web.zoom.us/rec/share/wf1fLbaqy1NOfKvQ2mL7U7ENPJrXeaa8hiEd-6FYz03xmHaYV85sy6le863g2BGY?startTime=1593693414000 Password: 9t$4r909
Sickbed to Summits
https://us02web.zoom.us/rec/share/ouxlCrPPy0RJT6fL9WfOe7UuHabnX6a80CFI-fpbmkaNN4icmBrNT5OsfKC9hG_u?startTime=1593607426000 Password: 3P!^+X4m
AMNET Meeting Saturday 30th November 2019
The AMNET Christmas meeting for 2019 was held on Saturday 30th November in the David Dunn Suite in Addenbrooke’s Hospital and was attended by around 40 people. There was the usual spread of appetising food for our ‘bring and share’ Christmas lunch and the raffle.
Heidi welcomed everyone to the meeting. She thanked Rachel Davies, who has stepped down from her role as Membership Secretary and presented her with a large bouquet of flowers and a voucher to express our thanks for the tremendous job she had done over the last 10 years. Rachel said she had enjoyed doing the job and she was not giving up on AMNET which she felt was a very welcoming organisation that is doing an important job. Heidi pointed out that we are still looking for a new Membership Secretary and Rachel told the meeting the job could be easily learned and was not too onerous to do and Rachel is very happy to support anyone who was willing to take it on, while they learned the ropes.
Heidi commented on the number of contributions to the newsletter this time and put out a request for members to write about their experience for the next newsletter. As a follow up to the article she wrote for the newsletter, Mandy Frances told the meeting about her experience of having a BAHA fitted. She has a pin anchored into her skull and she has a hearing aid that attaches to it. She did say that , under a local anaesthetic the operation was a little uncomfortable, so she would recommend having a general anaesthetic, but otherwise there have been no problems . She is able to wash her hair and go swimming with the pin in situ and the site does not need a lot of care. Unlike previous version, the new BAHA is a stand alone hearing and does not require another aid in the ‘good’ ear, sound is transmitted through the hearing aid and the bone in the skull directly to the brain where it is interpreted. Mandy said there have been no problems and the effect has been very good, she can now hear everything, especially in difficult situations such as restaurants. She highly recommends having one fitted. Her BAHA was fitted under the NHS at Addenbrooke’s Hospital.
Heidi then introduced our speaker, Anne Glynn, Clinical Lead and clinical Specialist physiotherapist in Neurology, Colchester Neuro-rehabilitation and Vestibular Rehabilitation Service.
Our next meeting will be on Saturday 20th June 2020 in the David Dunn Suite at Addenbrooke’s Hospital Cambridge and the speaker will be Kate Burton, Advanced Practtioner in Neuro-oncology, Addenbrooke’s Hospital. This will also be our AGM. Doors open 13.00hrs
AMNET Meeting Saturday 29th June 2019
The latest AMNET meeting was held in the David Dunn suite at Addenbrooke’s Hospital, Cambridge on Saturday 29th June. We were pleased to welcome a number of members, including some new faces, despite it being the hottest day of the year so far.
The meeting opened with the AGM and then was followed by a talk from Betty Watts , a volunteer from Cambridgeshire Hearing Help.
Cambridgeshire Hearing Help is a charity operating in Cambridgeshire providing free community based NHS Hearing Aid maintenance drop in sessions across the county. At these sessions volunteers will clean and retube NHS hearing aids, supply NHS hearing aid batteries and provide other information/advice about hearing loss. This is a drop in service and does not require an appointment. The charity also offers free home/residential home visits for those who are housebound. Other services they offer include hearing loss awareness talks to community groups, lip reading classes, ‘living well with hearing loss’ workshops for those with newly acquired hearing loss, and peer support and signposting to other peer support groups. Website: www.cambridgeshirehearinghelp.org.uk .
Betty gave us a very interesting talk about her work as a volunteer and also about the causes of hearing loss and ways of managing hearing loss, including making the best of your hearing aid, and the equipment that can help to enhance hearing.
We would like to thank Betty for giving up her time to give us an interesting and entertaining talk.
AMNET Meeting and AGM Saturday 1st December 2018
AMNET’s end of year meeting was held at Addenbrooke’s Hospital on 1st December. As usual, at this time of year it was accompanied by a ‘Bring and Share‘ lunch which resulted in a very varied and appetising spread. There was also an excellent raffle organised by Bronwyn and Charlie.
After members had enjoyed lunch accompanied by Bronwyn’s excellent fruit punch, Heidi updated us on what the Trustees have been doing. The dates for next year’s meetings will be Saturday 29th June and Saturday 30th November. Speakers are not yet finalised, but the Trustees would like members to let them know about any speakers or topics they would like to hear about at forthcoming meetings.
As members will be aware Sally has stepped down from being Newsletter editor after 6 years, having done a very good job. Heidi emphasised how important the newsletter is to the membership, particularly those unable to get to meetings. Chris has taken over the role for the moment, but we would like to hear if anyone would be interested in getting involved in the production of the newsletter. Everyone can have a role in producing the newsletter, it is the content that makes it interesting and exciting, so if you have a story or some information you would like to share then please let Chris know. If you don’t feel able to write it yourself, Chris will be very happy to help. You can contact her via her email email@example.com or via the website or Facebook page.
Finally Heidi told us about the development of small group meeting s around the region. These are being held in people’s houses and aim to be informal, allowing members to come together to share experience and each other’s company. The next one will be in the South Suffolk/North Essex area on Saturday 23rd March (Bronwyn and Charlie), and there will be further meetings in Hertfordshire and Norfolk later in the year. Please contact one of the Trustees if you would like to know more.
Heidi was then presented with a bunch of flowers in recognition of all her hard work for AMNET over the last year.
Heidi then introduced our speaker Ilse Patterson who is a senior R and D Radiographer at the MRI Suite at Addenbrooke’s Hospital. She presented a very interesting talk about the different scanners now available, with a little about how they are used and even how they work. She also talked about her role in research and some of the logistics related to MRI scanners and scanning.
We would like to thank her for giving up her Saturday afternoon and for a very interesting and enjoyable talk.
AMNET Meeting and AGM Saturday 1st July 2018
AMNET held its 22nd AGM on June 30th 2018 in the David Dunn suite at Addenbrooke’s Hospital Cambridge. Unfortunately our Chairman Heidi Pratchett was unwell so not able to attend so Alan Gosling (Treasurer) and Alison Frank (President) undertook a two hander. This is the first time we have used this suite and despite being a boiling hot day the very efficient air conditioning was almost too cold! Trustees and helpers were thanked and gave their reports and a plea was put out for more members to join them. Our excellent AMNET newsletter editor Sally Hardy has retired, our thanks to her for all her hard work so now we need a replacement.
A new venture for us this year has been mini meetings in members’ homes in different areas of East Anglia which have worked very well. 3 have happened so far with a maximum of 10 people, conversation has flowed, questions answered where possible and tea and cake have been enjoyed. Our thanks to our hosts Peter, Alan and Rachel.
When business was concluded our speaker Rachel Knappett was introduced. She last spoke to us in 2010 so was able to update us on changes in the Audiology Department and the Single Sided Deafness Clinic with which she is involved. Members had questions concerning how to get another assessment if first long ago, does the NHS set aside money for ENT problems, battery life improvement, CROS aid system, external pen mikes – useful up to 25 metres away, can you put rechargeable batteries in a NHS hearing aid (No), ear plugs designed for use by musicians – good because doesn’t distort but be careful not to overuse them as it makes the ear super sensitive, anticipated life span of a CROS aid – up to 5 years.
Rachel was thanked for talking to us and presented with an arrangement of flowers kindly made by Bronwyn, one of the Committee.
Members enjoyed cold drinks and refreshments including a non alcoholic punch prepared by the multi talented Bronwyn.
Our next meeting is on Saturday December 1st in the David Dunn suite at Addenbrooke’s Hospital starting at 12 with the speaker Rhys Slough MRI manager at Addenbrooke’s at 12.15 telling us about MRI scanners and how they work. BANA members are very welcome to attend. Refreshments are a bring and share lunch , drinks will be provided.
Driving, acoustic neuroma and the DVLA
We sometimes get asked about whether people need to inform the DVLA about an acoustic neuroma.
The following information, taken from the DVLA website suggests that when diagnosed with an acoustic neuroma, unless you have symptoms such as sudden and disabling dizziness, you do not need to inform the DVLA. The exception is if you hold a ‘Bus, coach or lorry’ licence, in which case you must inform the DVLA of a diagnosis of acoustic neuroma.
The advice given is below:
Car or motorcycle licence
You must tell DVLA if you suffer from sudden and disabling dizziness.
Talk to your doctor if you’re not sure if your acoustic neuroma causes other symptoms that will affect your driving, or if you must tell DVLA about them.
Fill in forms B1 and DIZ1 and send them to DVLA. The address is on the form.
Bus, coach or lorry licence
You must tell DVLA.
Fill in forms B1V and DIZ1V and send them to DVLA. The address is on the form.
AMNET meeting Saturday July 1st 2017
Our Summer AMNET Meeting fell on a beautiful day in July and we were very pleased to welcome Dr Sarah Jefferies, Clinical Oncologist, Addenbrooke’s Hospital, Cambridge, to come and talk to us.
Dr Jeffries talked about different aspects of radiotherapy in relation to treating skull base tumours. Radiotherapy is considered an appropriate option for treatment of vestibular schwannoma generally in tumours under 3 cm with no brainstem compression, and may take one of three forms:
• Single treatment or ‘radiosurgery’ using ‘Gamma Knife’ which up until now has been offered in Sheffield and London
• Radiotherapy over 30 treatments referred to as ‘fractionated radiotherapy’ which has been offered successfully at Addenbrooke’s hospital for a number of years
• Cyberknife which is radiotherapy given over 1-3 treatments which has been offered at St Bartholemew’s Hospital London.
Dr Jeffries informed us that a new machine, a ‘Novalis Linear Accelerator’ is being commissioned by the Addenbrooke’s Charitable Trust’ for use in the Clinical Oncology Department at Addenbrooke’s Hospial and will enable radiotherapy treatment comparable to Gamma Knife and Cyberknife to be offered to patients at Addenbrooke’s Hospital, alongside the treatment options already available.
Dr Jeffries with Heidi Pratchett (Chair of AMNET)
The Annual General Meeting for AMNET was also held and minutes of the meeting are available in our current newsletter.
Tinnitus Awareness Week 6 – 12 February 2017
Tinnitus Awareness Week (TAW) is an annual event which is taking place from 6-12 February. Activity will be based around the campaign ‘Together for Tinnitus’ which is intended to generate discussion about tinnitus and raise awareness of the work being carried out and support provided by the British Tinnitus Association and other services across the UK.
Tinnitus Awareness Week 2017
AMNET meeting Saturday 26th November 2016
AMNET held their Christmas meeting on Saturday 26th November at Addenbrooke’s Hospital in Cambridge. Everyone contributed towards a buffet lunch which proved to be interesting and tasty. It was a good opportunity for members to meet and chat to each other
The main event of day was a talk by Mark Smith a specialist audiologist who works in the Single Sided Deafness Clinic at Addenbrooke’s Hospital. He talked about how the clinic was set up and that it serves a wide range of people with Single Sided Deafness, including people who have had skull base surgery. He told us about what happens in the clinic and also a lot about new hearing aids and other devices that can help to improve hearing. He also described some of the plans for the future of the clinic and took time to answer questions from the audience.
After the talk we enjoyed some more food and chat and the draw for the raffle in which there were lots of lovely prizes.
Our next meeting will be Saturday 1st July 2017.
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)
AMNET 20th Anniversary
AMNET celebrated 20 years of supporting people who have been diagnosed with a skull base tumour. We held a day to celebrate this, on Saturday 11th June 2016 at the David Rayner Centre, Scotsdale’s Garden Centre, 120 Cambridge Road, Great Shelford, Cambridge,
Over 70 people turned up to the David Rayner Centre to join the celebration and there was plenty going on throughout the day. We would like to thank Cambridge Hearing Help and Action on Hearing Loss who were there with information, equipment and advice, Jane Robson who offered facial and hand massage, Becca Frank who was doing manicures, Chris Tate and his Tai Chi group, Bronwyn Lummis for flower arranging, Andrew Hastings with his model railway, Hugh Richards with his photographs and Helen Bush and Charlie Lummis for the music. There was also, of course, a good lunch including some very seasonal strawberries and cream!
Thank you to everyone who made Saturday such a fantastic day! To the Trustees who worked so hard before and on the day, and to all those who contributed towards making the day such a success, not to mention all the members who turned up to help us celebrate 20 years of supporting people diagnosed with skull base tumours such as acoustic neuroma (Vestibular Schwannomas).
I hope you enjoy the photos!
Photos by Hugh Richards.