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Home Counties Cochlear Implant Group Winter 2012 www.hccig.org.uk Report from Chair Welcome to the winter edition of HCCIG’s Magnetise which we hope you will find both interesting and informative. I would like to thank you all for renewing your membership and for your kind donations; it all helps in the running of the group and goes towards the various open and social days we have throughout the year. Please do remember to inform us if you have changed your email or home address, to keep our records as accurate as possible. I wanted to take a moment to thank all those of you that have been in touch with messages and CI updates over the last year. Without your help spreading awareness of HCCIG and what we do we wouldn’t be as successful as we are. Your feed back is so important to us and greatly valued. the day and would like to send us a donation, please find enclosed slip located at the end of this newsletter. In 2013, we’ll continue to bring you more news from the manufacturers and dates of various events. If you have news to share, do please let us know. We hope your Christmas plans are going well and finally the trustees of HCCIG would like to wish you all a healthy and happy new year. Jenny Burdge Enfield Independent Press Release Oct 2012 Grandmother Jenny Burdge 'thankful' to hear grandsons after life-changing surgery Our next event is the Christmas dinner weekend, on Friday 30th November, at the Westcliff Hotel, Westcliff on Sea, Essex. There will be a three course dinner at the hotel at a cost of £17 per person (which is payable on the night) should you be interested in joining us for the evening only please do let me know. The following day Saturday 1st December, we have bingo followed by afternoon tea, early evening there will be a chance to catch up at the bar before on to a dinner and dance (held at the hotel), with an optional visit to Maxim’s Casino. If you wish to attend please let us know ASAP. Finally with the festive season not too far away now we have our fundraising event, Christmas carol signing. This takes place at the Palace Garden shopping centre in Enfield Town on Sunday 16th December from midday till 3pm. Please come along and support us, as well as doing some Christmas shopping. Jenny Burdge with her cochlear implant A grandmother who underwent life-changing surgery 21 years ago is celebrating hearing her grandsons speak for the first time. After the event you are invited to join us at The Coffee Bar, 36 Brigadier Hill, Enfield, Middlesex, EN2 0NQ, from 4pm onwards. We have arranged a Ploughman’s buffet and refreshments. Please do let me know if you intend to join us so we have an idea on numbers to cater for. Should you not be able to join us on Jenny Burdge, who lives in Maxim Road in Winchmore Hill, was born with a hearing loss and lost all her hearing at the age of 15 and was one of the first people in the UK to have a cochlear implant to restore her hearing. The 57-year-old, who has genetic disorder Pendred syndrome, was not able to hear her Page 1 of 9 son and daughter – now aged 24 and 32, utter their first words. Mrs Burdge, who was not able to hear using a hearing aid, is elated that she can now hear her grandsons four-year-old Harry and Alex aged ten-months-old grow up. The grandmother, who is married to husband Peter, said: “When I had my two children I didn’t hear them but having the grandchildren has made me realise how much I missed out on when my own two children; the words they use, the stories they come out with. “With the birth of my grandchildren, I feel that I am reliving being a mother again and hearing those beautiful sounds of early childhood that tell you that your baby is happy, or needs attention. the website be sure to let us know. Guest blogger contributions will be posted to the website; please email your blog posts and photos to [email protected] Facebook HCCIG is now on Facebook. You can find us under Home Counties Cochlear Implant Group. Feel free to post links to your blog articles there and any CI-related news. Twitter You can find us tweeting on Twitter at @HCCIG HCCIG contact details are on the website at http://hccig.org.uk/contact/ Dates for your Diary 2013 (Subject to change, please check website for up to date details) “It’s just a wonderful way to celebrate 21 years of this fantastic technology that has restored some of my hearing. I am very thankful.” She said every day is a "new day" and she is still hearing sounds that she has never heard before and has increased in confidence now she can hear. Mrs Burdge set up support network the Home Counties Cochlear Implant Group 12 years ago which allows people to share their experiences of the implant. They meet in Brigadier Hill in Enfield monthly. Cochlear implants, which were first used 30 years ago, are electronic devices for adults and children who cannot hear through hearing aids. Unlike hearing aids, cochlear implants bypass damaged hair cells in the inner ear and stimulate the hearing nerve directly. Wine Bar Tuesday 26th February 2013 Tuesday 21st May 2013 Tuesday 16th July 2013 6pm to 9pm, Brookes Brothers, Wine Bar 33 – 35 Brooke Street, Holborn London EC1N 7RS Nearest tube Chancery Lane Exit 2 Just come along, join in and catch up on the latest CI chat. Coffee Bar First Wednesday of every month except April. 1–3pm 6th February 2013 6th March 2013 1st May 2013 36 Brigadier Hill, Enfield, EN2 0NQ Child friendly, low cost coffee and snack bar, with free chat! Meet other CI users; find out more about Implants from people who have them. Everyone is welcome. Newsletter update Please submit articles for publication in the newsletter by 28th February to [email protected] Canal Trip Sunday 18th November 2012 This is now fully booked, the next trip will be in April 2013. Should you be interested, please send me an email as only 10 places are available. The mooring is easily found by following the signs towards Harlow Town Station, CM20 2XB. Your newsletter will be emailed to you to save on printing costs and postage. Summer BBQ Saturday 6th July 2013. “Why not contact your local press with your CI story?” Social media updates Website If there is anything else you would like to see on Page 2 of 9 The British Cochlear Implant Group (BCIG) Guidelines for Cochlear implant Users, have been updated. To get your copy go to www.bcig.org.uk you can then download the recommended guidelines on safety for Cochlear Implants users. WATERPROOF NEPTUNE PROCESSOR FROM ADVANCED BIONICS WINS PRESTIGIOUS DESIGN AWARD in recognition of excellence in product design. Neptune was also recognised as a Finalist at the 2012 Medical Design Excellence Awards® competition held in Philadelphia in late May. “We’re proud to receive awards and accolades from Red Dot and other esteemed organisations,” said Dr. Gerhard Roehrlein, CEO and CTO of Advanced Bionics in the United States. “We knew we had something special when we created Neptune, which is the only swimmable processor on the market that can be worn for hearing in and under water. Winning these prestigious awards from renowned design authorities proves that we didn’t just create a product that’s extremely beneficial to recipients, we also created something aesthetically pleasing that people want to wear.” AB’s Neptune, the world’s first and only swimmable sound processor, wows design experts at Red Dot’s renowned international product design competition. Advanced Bionics is pleased to announce that Neptune™ the world’s first and only swimmable sound processor has earned a prestigious product design award from the German based Red Dot Institute for Advanced Design Studies. Neptune, one of 4,515 products submitted by manufacturers from around the globe for this renowned product competition, was awarded a coveted “Red Dot Award: Product Design 2012” at a July gala in Essen, Germany, after undergoing an extensive evaluation process from a 30 member jury composed of product design experts. “The experts thoroughly examined, tested and evaluated each individual entry, applying the highest standards,” said Dr. Peter Zec, initiator and CEO of the Red Dot Design Award, which has origins dating back to the 1950s. “With their performances, the laureates did not only demonstrate an extraordinary design quality, but they also showed that design is an integral part of innovative product solution This design seal of approval from Red Dot represents the third award garnered by Neptune so far this year a considerable achievement given the waterproof sound processor was introduced a few short months ago in the first part of 2012. Earlier this year, the Industrial Designers Society of America Northwest honoured Neptune with a Silver Shaggie award Across the world, recipients do want to hear with the beautiful Neptune processor, as evidenced by high demand for the product since its introduction. The fact that Neptune is the only sound processor on the market with truly waterproof technology, allowing recipients to wear it in the bath, shower, or pool, is an obvious reason for this high demand. In addition, Neptune comes fully compatible with the industry’s most advanced hearing technology, including ClearVoice™, HiRes 120™, and AutoSound™ for better hearing in and out of the water. AB recently debuted the new Build my Neptune App for iPad® devices in order to easily create a custom Neptune style to match any mood or wardrobe. Available as a free download from the App Store, the interactive application allows users to build their ideal Neptune look by selecting from hundreds of fashion forward colour combinations. Touch friendly features include the ability to mix and match colours and cables, rotate Neptune 360 degrees, create a favourite swimming configuration, share customised Neptune looks on Facebook and Twitter, and even email designs to friends and clinicians. For more information about the award winning Neptune processor or to learn more about AB’s Page 3 of 9 revolutionary cochlear implant technology, p l e a s e contact us today, call; 01223 847888, Email; [email protected] or visit www.AdvancedBionics.com. assistant). Any key presses will not work while locked. To unlock the keypad, move the lock/unlock slider up. All keys function normally when the keypad is unlocked. To know more about how to use your Nucleus Sound Processor, visit the Cochlear website: http://www.cochlear.com/uk/nucleussupport/user-manuals Cochlear® Nucleus® phone use – understand the technologies available and how to best use them Using the phone is an important aspect of everyday life that patients with an implantable hearing device can learn to enjoy. As it’s such an important part of leading a normal work and social life Cochlear® knows that patients have many questions on phone use. Locking and Un-Locking your Cochlear® Nucleus® 5 Sound Processor and Remote Assistant Locked out and unable to change the settings on your Cochlear® Nucleus 5 Sound Processor? The main technology available to assist when using a phone is a Telecoil (t-switch or t-coil) which picks up explicitly generated magnetic fields, such as room loops and ear level induction loops (HATIS). The buttons on the sound processor can be locked to prevent changing the settings by accidentally pressing buttons. This maybe ideal for children - parents can lock the sound processor buttons to prevent their child from tampering the settings. Also, you can lock and unlock your remote assistant. To lock and unlock using the sound processor's buttons: To lock the buttons on the processor, press both the upper and lower buttons at the same time. The LED light will flash green, then orange, and then return to a slow orange flash. Any button press when locked will result in a quick orange flash. When locked, you cannot change the sound processor settings. To unlock the processor buttons, press the upper and lower buttons at the same time. The LED light will flash orange, then green and then return to a slow orange flash. To lock and unlock the remote assistant: The remote assistant keypad can be locked to avoid accidental changing of settings. To lock the keypad, move the lock/unlock slider button down (located on the right side of the remote How does a Telecoil work? The Telecoil works on the principle of electromagnetic induction through the production of a voltage across a conductor moving through a magnetic field – the same effect used in electric motors, energy transformers and stereo speaker systems. In the case of phone use, the phenomena is used twice. First, in the phone to convert electrical current to a sound pressure wave – otherwise known as the speaker or receiver – and second, by the Telecoil picking up the same magnetic field used to move the speaker and converting it back to electrical current which is digitized to audio for the cochlear implant. Using the Telecoil Ensure the phone’s speaker is positioned around, or as close as possible to, the Telecoil on the sound processor for best Telecoil pick up. Recommending phone types It is important to find a mobile phone model that works for the individual. Cochlear implant recipients should visit a retail store or ask a friend or family member if they can road test their phone. Different phones have different quality signals for their Telecoil emissions and are rated according to how well they are picked Page 4 of 9 up by hearing device microphones. Cochlear hasn’t tested individual models itself but something that patients should look out for when they purchase a phone are the ‘T’ and ‘M’ ratings. Mobile phones rated M3 or M4 (M stands for microphone) are likely to generate less interference for someone with a cochlear implant. M4 is the better of the two ratings. Mobile phones rated T3 or T4 (T stands for Telecoil) are likely to be usable with the Telecoil in the Cochlear sound processor. T4 is the better of the two ratings. Reducing interference Interference can come from the transmission signal that sends the call, from the antenna, battery or screen backlight. Mobile phones that are not Telecoil compatible will produce interference when held next to a Telecoil. Mobile phones that are not Telecoil compatible will produce interference when held next to a Telecoil. The interference is not harmful but can create noise that compromises the quality of a telephone conversation. Accessories for hands free use will help to minimise mobile phone interference by creating distance between the phone and the sound processor. Programming for a mobile It is important for patients to try different ratios to determine the best mix of sound for them. The Telecoil in the Nucleus® 5 Sound Processor will pick up the mobile phone signal automatically when it is either in auto detect mode or switched on. However, the mixing level, which sets the sound through the telephone and the external microphone, should be manually adjusted to a level of sound that suits the individual. For example, if the user prefers to hear their own voice when speaking, they should select a mix that allocates 60% of sound via the Telecoil and 40% of sound via the external microphone. A second program in the sound processor offers a mixing ratio for very noisy environments that diverts 75% of sound through the Telecoil allowing talk on the phone in environments that are often too noisy for most normally hearing people. To read more about phone use with the Cochlear Nucleus System, visit the Cochlear website: http://www.cochlear.com/uk/connect-phone Dr Lavinia Marin receives the 2012 MED-EL London Temporal Bone Dissection Course Fellowship Award Dr Lavinia Marin, an Otolaryngology Resident from the Timisoara ENT Clinic in Romania, has been awarded the 2012 MED-EL London Temporal Bone Dissection Course Fellowship. This fellowship is now in its fourth year and is open to trainee ENT surgeons from countries with fledgling Cochlear Implant Programmes. The recipient benefits from the opportunity to learn from some of the most eminent ENT surgeons in the UK. Dr Marin attended the course at King’s College London School of Medicine, followed by two weeks’ observership at the Auditory Implant Centre at Guy’s and St Thomas’ NHS Foundation Trust London. Dr Marin is keen to extend her knowledge as the Timisoara ENT clinic is a specialised referral centre, receiving patients requiring ear surgery from all over Romania. The clinic is one of the few to run a Cochlear Implant Programme in a country where about 70 implants are performed annually. During the observership at the Auditory Implant Centre, Dr Marin attended cochlear and middle ear implant surgeries as well as taking part in implant team meetings and paediatric ENT consultations. She was particularly impressed by the commitment of the teams to find a good solution to every patient’s problem, a principle she is determined to follow in her own clinic. She also returns to Romania with a much better knowledge of the anatomy and surgery of the temporal bone gained from the practical drilling sessions, discussions and lectures. Dr Marin is extremely grateful to MED-EL for this wonderful opportunity and comments: “The course and observership are extremely useful in the evolution of a young doctor. I think this will definitely be the starting point of a change in the views and medical practice in developing countries. I would also like to thank Mr O’Connor for allowing me to be a part of his team for a while and giving me confidence in my practical skills during the course.” Cassandra Brown, MD of MED-EL UK is proud of the on-going success of this fellowship. “MED-EL Page 5 of 9 is a worldwide company and as such, we are proud to support these outstanding candidates in their determination to improve patient outcomes in countries where auditory implant programmes are in their infancy. The London Temporal Bone Dissection Course provides excellent training to help these young ENT doctors fulfil their potential.” For further information about the London Temporal Bone Dissection Course Fellowship award or about any of MED-EL’s products, please email: [email protected]. New Addition to the MED-EL FLEX Electrode Array Portfolio MED-EL is the leader in providing soft, flexible electrode arrays which ensure maximum protection of the delicate structures in the cochlea. Preserving residual hearing enables users to benefit from combined electric and acoustic stimulation, and may help secure the viability of any future non-CI treatments. The ultra-flexible, wave-shaped wire designs, and a lateral wall position, are key to making MED-EL’s electrode arrays the world’s most flexible and atraumatic. Minimising trauma during electrode insertion maximises the benefit to the patient. Each electrode array contains the optimal number of contacts for stimulation of nerve fibres leading to best performance. Optimal number and spacing of electrode contacts also significantly reduces rigidity; allowing for gentle insertion without damaging the delicate cochlear structures. The unique FLEX tip features single electrode contacts on the apical end to further increase mechanical flexibility. The latest addition to the FLEX electrode array portfolio is the FLEX28. This 28mm electrode array offers an alternative to the FLEXsoft, featuring a lower intra-cochlear volume, whilst maintaining the benefits of complete cochlear coverage. Cochleae may differ significantly in size and shape, as well as in individual cochlear duct lengths. MED-EL offers the widest portfolio of electrode arrays. Each implant recipient can be sure to receive the best possible electrode array for their unique cochlear anatomy. For further information about the MED-EL FLEX Electrode Array Portfolio or any of our other products, please email [email protected] or visit www.medel.com. Will Wonder is Back! MED-EL’s comic strip superhero with a cochlear implant, Will Wonder, is back for his latest adventure in Will Wonder and The Chain of Three. Fans of superheroes and comic strip stories will love following Will’s continuing adventures in Temporia as he sets off with his friend Tara in search of the missing hammer. Can they stop the impending war between Tonus and Temporia? Drawing inspiration from the many young CI users who are able to attend mainstream schools with their hearing peers, the character of Will Wonder has been designed to engage young adult readers and beyond. Will was born with a profound hearing loss and is shaped by his experiences growing up with his robot ears. He listens to the world in a different way, his special powers making him more sensitive to the vibrations radiating from other people, the earth and the environment. Teachers can use Will Wonder and his Robot Ears and the sequel, Will Wonder and The Chain of Three to introduce the topic of hearing loss and cochlear implants to their students. Additional materials are available for download for educational use. Will Wonder and The Chain of Three is available in English, German and Spanish. To catch up with Will’s latest adventure and for related educational resources visit www.medel.com. Will Wonder and The Chain of Three is one of a wide range of on-line rehabilitation resources available on the MED-EL website, many of which are available in several languages to suit MED-EL users worldwide. Today, thousands of people in more than 90 countries enjoy the gift of hearing with the help of a product from MED-EL, significantly increasing their quality of life. For more information about our rehabilitation resources email [email protected]. Page 6 of 9 Dr Ralph Holme, Head of Biomedical Research for Action on Hearing Loss, said: 'The research we have funded at the University of Sheffield is tremendously encouraging and gives us real hope that it will be possible to fix the actual cause of some types of hearing loss in the future. For the millions of people for whom hearing loss is eroding their quality of life, this can’t come soon enough. A cure for deafness is a step closer after University of Sheffield scientists used human embryonic stem cells to restore hearing in a common form of deafness. 'Today's cochlear implants provide a sensation of hearing, but they need a healthy auditory nerve to stimulate. By combining these devices with a therapy that repairs the auditory nerve many more people might be able to benefit from cochlear implant technology in the future.' For information about how Action on Hearing Loss is funding biomedical research to develop treatments to improve the everyday lives of people with hearing loss. Turning stem cells into ear cells In research funded by Action on Hearing Loss and the Medical Research Council, researchers from the university developed a method to turn human embryonic stem cells into ear cells needed for hearing - 'hair cells' that detect sound and 'auditory neurons' that carry information about sound from the ear to the brain. Hearing loss can be caused by damage to either or both type of cell. Transplantation of the auditory neurons into deaf gerbils, improved their hearing by 46% on average. Improvements were first seen about four weeks after treatment. As well as proving that stem cells can be used to repair damaged hearing, it is hoped the breakthrough – published in the journal Nature – will lead to new cell-based therapies in the future for some forms of deafness. Action on Hearing Loss Action on Hearing Loss is the charity working for a world where hearing loss doesn't limit or label people, where tinnitus is silenced – and where people value and look after their hearing. Our vision is to find a cure for hearing loss and tinnitus. We fund research discoveries around the world and break down barriers to translate these discoveries into viable treatments and medicines. We are also increasing the number of researchers in the field through our well established grant schemes, and providing important support for companies wanting to develop medicines and treatments. http://www.actionhearingloss.org.uk/news-andevents/all-regions/press-releases/human-stemcells-restore-hearing.aspx The Ear Foundation Curry Night 'Important step forward' Dr Marcelo Rivolta, who led the project, said: 'We believe this is an important step forward. We now have a method to produce human cochlear sensory cells that we could use to develop new drugs and treatments, and to study the function of genes. And more importantly, we have the proof-of-concept that human stem cells could be used to repair the damaged ear. 'More research is needed. For instance, we want to understand the long term implications of this treatment and its safety.' Saturday 10 November 2012 (After the Sound Advice Adult Day on Voice) 7pm @ Mogal-e-Azam, £20.00 per person We had a very successful Curry Night last year and we have decided to do it again this year! If you would like to join us for our Curry Night at: Page 7 of 9 Mogal-e-Azam (Goldsmith Street, Nottingham, NG1 5JS) If you would like to come along please contact either myself [email protected] or Jo Collinson [email protected] for a ticket. Don’t forget.......we are also having our Sound Advice Adult Day on this day as well on Voice with Sue Hamrouge (10:30am – 3pm) if you would like to book a place for this event as well if you haven’t already done so, please contact me as soon as possible to reserve your place: [email protected] Tel: +44 (0)115 942 1985 London 2012 – My Challenge working as one of the 70,000 volunteer games makers I wanted to tell you all about my experiences this summer working as a volunteer games maker. This gave me such a great once in a lifetime opportunity to be part of British history, something that has given me fond memories that I will cherish for the rest of my life. Not only did it give me memories but it also gave me the opportunities to see some of the games at the Olympic Parks, which I really enjoyed. During the summer I kept a brief diary to share with you all. Summer 2011 Applied to become a volunteer games maker for the following year’s games. Autumn 2011 I was called up for an interview at the Excel Centre. It was a very formal interview which lasted under 45 minutes. I answered the various questions for example, “Why did I want to volunteer for the games?” to which I replied along the lines of, “It’s a once in a lifetime opportunity.” Another question asked was, “how much did I know about sport and what sports did I do?” “Not much due to my deafness,” I replied. So coming out of the interview I felt my chances of success were small. December 2012 However finally I heard that it had gone better than I thought and I had got the chance to be a volunteer games maker. I would be working in the Transport Team helping International Journalists (media) get to the right venues on time. February 2012 I arrived at the first training event at Wembley Arena on a cold wet Saturday morning. I managed to get a good seat right at the front near to Lord Coe. Huge screens showed everything that was going on, what an experience. March 2012 The orientation session took place in Hackney. This is where I found out what I was to do and what was expected of me. I was given a portable loop system to use which did help, however I can also lip read well. June 2012 I collected my uniform. It really felt like it was going to happen now! July 2012 Training day at Bloomsbury was mostly the same as what had been covered at the initial training session in Hackney, just reinforcing the vital points. I also attended a venue in Russell Square where we were shown the various locations where we might be during our allocated shifts. My shift pattern consisted of starting at 2pm till 10.30pm then my early shift was to start at 6am till 2pm for a period of 10 days while the Games were on! 24 July 2012 My first shift was 2pm till 10.30pm, security was very strict, if you forgot your pass, you were not allowed in. My first day was at Bloomsbury Media Hub; I met lots of new people and had lots of fun. I enjoyed all of the games and most of all just being involved. Michael Somwaru Disclaimer HCCIG accept no responsibility for any information relating to third party organisations featured in this newsletter. While HCCIG makes every effort to ensure details are accurate, we advise our members to check these with the organisations concerned. HCCIG does not endorse any product or service of, nor does it verify any preferential treatment, offered by the organisations. All queries should be directed to them. Certain of the offers and services featured in this newsletter are only available to customers of those organisations. HCCIG does not provide medical advice or make recommendations with regard to any particular implant and no article in this newsletter should be construed as doing so. Page 8 of 9 Updated contact details for RNTNE Cochlear Implant Department RNTNE Hospital 330 Grays Inn Road, London, WC1X 8DA E-mail: [email protected] (batteries and repairs) Fax: 0207 915 1303 Text only: 07899748917 Adult Programme Phone: 0207 915 1301 E-mail: [email protected] Paediatric Programme Phone: 0207 915 1302 E-mail: [email protected] Contacting HCCIG Please would you only contact Jenny on HCCIG business during working hours of 9.00am to 5.00p.m.? Monday to Friday. This is to allow Jenny some free time with her family. Thank you. Trustees Chair: Mrs. Jenny Burdge 17a Maxim Road Winchmore Hill London N21 1EY Tel/Minicom/Fax: 020 8360 0514 Email: [email protected] Treasurer: Darren S Pallet BA FCA Trustee: David Gordon Newsletter composed by: Jenny Burdge Edited by: Louisa Boon Website: Tina Lannin A Voluntary Group Funded by Members Donation slip for carol signing fundraising event Please cut here Name:_________________________________ Address:_______________________________ Email address:__________________________ I am sending a cheque for £____ made payable to Home Counties Cochlear Implant Group. I am a UK tax payer and would like my ______________________________________ Postcode:______________________________ donation to be gift aided. Page 9 of 9