Stay Tuned – May 2016 by NextSense

STAY TUNED SCIC Cochlear Implant Program, an RIDBC service

May 2016

Clare’s cochlear implant journey

Clare’s cochlear implant journey Catherine Birman celebrates 1000 CI surgeries

From the Medical Director A/Professor Catherine Birman, SCIC Cochlear Implant Program Medical Director

We are Australia’s largest cochlear implant program, having performed 423 cochlear implants 2016 is already shaping up in 2015 – our biggest year ever! to be an exciting and busy Let alone the close to 3000 year for SCIC Cochlear recipients we provide continued Implant Program. support to with mapping and habilitation services. This year already over 1600 cochlear implant recipients have accessed our services including implant surgery, mapping, upgrades and device maintenance for existing recipients. This year we continue to expand and ensure accessible service provision for patients and their families. Our new facility in Deakin, Canberra is co-located with Canberra ENT, providing on-site access to ENT surgeons and our cochlear implant, implantable hearing devices and early intervention services all together, available from one convenient location. This is not only convenient for our patients, but especially important within a National Disability Insurance Scheme (NDIS) landscape, as people seek locally based expertise and greater access to services. I’m also looking forward to our services expanding further through our new Port Macquarie site later on in the year. In December, NSW Minister for Health, Jillian Skinner MP committed to $1.071 million over three and a half years to fund 30 bone anchored hearing devices (BAHDs) per year for hearing impaired adults unable to use traditional hearing aids. This is a wonderful initiative to help adults, who don’t have private health insurance to hear better. The NSW Government’s annual funding contribution of $305,910 per year for the next three and a half years until 30 June 2019, will help treat people in NSW suffering from conductive hearing loss, and improve their quality of life. BAHDs are an implantable hearing solution used to treat conductive hearing loss when traditional hearing aids are unable to be 2

worn, or when surgical outcomes are likely to be poor. They are recognised as a safe, effective treatment for conductive, mixed and unilateral hearing loss. We are delighted that SCIC Cochlear Implant Program has been chosen to manage the BAHD program, working with our own team of ENT surgeons and audiologists, and also partnering with other ENT surgeons and audiologists to help provide the BAHD and follow up on outcomes. In March, I was delighted to be part of World Health Organisation’s World Hearing Day, helping raise awareness about public health strategies to reduce the prevalence and impact of hearing loss. There were a number of live radio interviews throughout that week, answering questions from callers with hearing related queries, sharing information on ear care and hearing loss treatments and listening to caller stories and concerns about hearing loss and related health issues, and of course explaining cochlear implants are an option when hearing aids are not enough. We are always working to raise awareness of the extraordinary work our dedicated and experienced team deliver, yet with the increasing demand for our services and our desire to improve accessibility, our costs are forever increasing. We are reliant on donations and your support to ensure we meet these demands and are able to continue to provide world class implantable hearing solutions for all our present and future recipients. Donations can be made using the form on the back of this edition of Stay Tuned, by calling 1300 658 981 or online at www.scic.org.au. Thank you for your continued support and we hope you enjoy reading this issue of Stay Tuned. With best wishes, A/Professor Catherine Birman SCIC Cochlear Implant Program Medical Director

Clare’s cochlear implant journey 61 year old Clare, is one of many adults being supported by SCIC Cochlear Implant Program, an RIDBC service.

Clare, who was born with cerebral palsy, was diagnosed with hearing loss at age 14. “It is likely I had some degree of hearing loss at birth, although I was only diagnosed in my early teens after successive episodes of Menier’s Disease increased the severity,” said Clare. “I had also developed very good lip-reading skills by this time, which probably contributed to my late diagnosis.” Clare started out using bi-lateral hearing aids and by her early thirties was profoundly deaf. “My hearing slowly diminished over the years and after further Menier’s attacks my useful hearing reduced to virtually none. I was also a participant in studies at the National Acoustics Laboratory and for a while I used devices which converted sounds to vibrations that I felt through a wrist-band,” said Clare.

It’s now easier to follow my favourite TV programs and to have conversations with family and friends again over the phone. I’m also enjoying listening to the music of my youth and favourite bands – especially the Seekers and the Beatles!” said Clare. Clare is looking forward to celebrating her 30th wedding anniversary this year, with her husband Geoff. “My husband and I both have cerebral palsy and first met when we were working in the IT department at Cerebral Palsy Alliance,” said Clare. “I’m really looking forward to celebrating this milestone with friends and family and hearing the conversations of my loved ones.” What would Clare say to other people struggling with hearing aids?

After a visit to an Audiologist and losing her hearing aid on a rollercoaster ride, Clare decided it was time for a cochlear implant and hasn’t looked back since.

“The decision to have a cochlear implant is a very personal one and I’m sure must be especially difficult if you have some “usable” hearing. However, if you’ve got nothing, then you really have nothing to lose.”

“I was very excited during ‘switch on’, although also unsure of what to expect. Even though the sound was very different to anything I’d previously experienced, it was fantastic to be hearing again!”

If you wear hearing aids, but struggle to hear in crowded places, find it difficult to hear on the phone or are no longer able to hear children’s voices clearly, then a cochlear implant could be for you.

For more information about cochlear implants or SCIC Cochlear Implant Program, visit scic.org.au 3

Katrina (Chace’s mum):

We’re almost half way through the year and there are so many exciting things happening at SCIC Cochlear Implant Program.

Clinical update

With more sites and services opening across Australia, and the ability to deliver ongoing cochlear implantation support services remotely, we are now able to give more and more Australians access to life changing technology and provide them with ongoing support services during their cochlear implant journey. In March, we celebrated a significant milestone when our Medical Director, Associate Professor Catherine Birman, performed her 1000th cochlear implant surgery. To be able to have played such a big part in so many people’s life changing journeys to better hearing is an incredible achievement and privilege for Cathy and we congratulate her for this remarkable accomplishment. A/Professor Birman was also the first female Ear, Nose and Throat surgeon in Australia to be awarded the title of Clinical Associate Professor for performing a cochlear implantation on the youngest patient in Australia, a three month old child, and for her expertise in many forms of implantable hearing devices. This milestone, along with the NSW Government’s recent funding of a Bone Anchored Hearing Devices program to be managed by SCIC Cochlear Implant Program, is testament to our world-class expertise in implantable hearing solutions and to the comprehensive services delivered by our dedicated and passionate staff members. I’d also like to congratulate our Clinical Operations Manager, Eleanor McKendrick, on the recent arrival of her new baby son, Jesse, and welcome another arrival – our new audiologist based in Wollongong – Damian Haeusler. Thank you for your continued support and involvement in our program and please feel free to provide any feedback or comments your may have to your local centre. Bart Cavalletto Director, Services Royal Institute for Deaf and Blind Children (RIDBC) 4

“What an amazing woman and surgeon, at a time when we as a family were scared and anxious, the support and professionalism from A/Prof Birman was beyond what we expected. Cathy, we would like to thank you from the bottom of our hearts for giving our son the opportunity to hear and speak. The cochlear implant surgery has had a profound effect on transforming both our son’s and our family’s lives.”

Anna (Alexander’s mum): “I would like to say that you are one fantastic and dedicated surgeon. You have given me a lot of confidence in helping us to achieve our dreams and goals of being able to hear better, especially my son Alexander. He blew me away with his ability to hear and speak well at a very young age! I also wanted to personally say that you have a heart of gold and took great care of us during the CI journey along with your fabulous SCIC Cochlear Implant Program staff.”

Natalie (Lila’s mum): “Without A/ Prof Birman’s expertise and experience working with children with CHARGE Syndrome, I doubt my daughter would ever have been successfully implanted. We will be forever grateful to her for giving Lila the gift of hearing.”

Angela (William’s mum): “Our family thinks of A/Prof Birman as a superhero, she has given us much more than Batman ever could! Thank you are words that can never be said enough, congratulations on your milestone!”

Associate Professor Catherine Birman celebrates...

1000

cochlear implant surgeries

Royal Institute for Deaf and Blind Children (RIDBC) celebrated a significant milestone this month when Associate Professor Catherine Birman, Medical Director of SCIC Cochlear Implant Program, performed her 1,000th cochlear implant surgery. As a prominent Ear, Nose and Throat surgeon, A/Prof Birman knows how important technology is for children and adults experiencing moderate to profound sensorineural hearing loss.

Jessica received her second cochlear implant this month

“It is a great honour to be part of so many different people’s journeys to better hearing,” said A/Prof Birman. “Technology has come a long way since Professor Graeme Clark’s first cochlear implant recipient in 1978, with SCIC recipients receiving a cochlear implant at ages from 3 months to 95 years and hearing through the cochlear implant getting better and better.” To commemorate the event and the 1,000 patients who received life-changing cochlear implant surgery, RIDBC hosted a celebration on Wednesday 30th March at our Gladesville centre. NSW Minister for Health, The Hon. Jillian Skinner MP attended the event and spoke about A/Prof Birman’s achievements and how SCIC Cochlear Implant Program and the NSW Government are setting new benchmarks in cochlear implantation services, investing in clinical excellence, professional development, technology, infrastructure and research programs, and forging close ties with other organisations in the cochlear implant field to continually build, develop and grow hearing solutions for the people of NSW. 21 year old university student Jessica Liang from Auburn, received her second cochlear implant this month from A/Prof Birman. Jessica was diagnosed with profound hearing loss at 12 months of age and hasn’t looked back since receiving her first cochlear implant at just 22 months.

“I cannot imagine a world without sound. My cochlear implant has allowed me to dream big, explore opportunities and connect with other people around me. Deafness is not a hindrance, but an amazing part of my identity which I have used to leverage myself to greater ambitions,” said Jessica. Jessica was excited to receive her second cochlear implant. “I was nervous but also excited about receiving my second cochlear implant and I’m very much looking forward to hearing sounds through my right ear and no longer having to adjust my position accordingly,” said Jessica. Jessica recommends others struggling with their hearing to investigate the options available. “Don’t be afraid to shout out to the world about your deafness. I know you might be struggling with your hearing, I struggled at one point but everyone has his or her own challenges. Did you know that by 2050, 1 in 4 Australians are projected to have some form of hearing loss? You’re not alone so step up to the challenge and take action to educate yourself on your hearing levels and set daily goals to manage your hearing,” said Jessica. 5

Awareness seminars Throughout 2015 we held a series of cochlear implant awareness seminars, in partnership with Cochlear, targeting medical practitioners, audiologists and other professionals caring for adults with hearing loss.

An interview with Canberra Early Intervention Consultant, Jocelyn Ho When did you start your new role in Canberra? I started working at the SCIC Cochlear Implant Program offices at the previous premises on Rudd Street in August 2015. Having worked as an audiologist in Namibia for the past year, it was nice be back in Australia and working for such a well-resourced centre. Are you enjoying working from the new Canberra site in Deakin? My working environment improved even more when we moved to the new site in Deakin. The Deakin office has an additional audiology booth, which means that we have greater flexibility when assessing & testing clients. The new site also has 3 therapy rooms which can be used by any of the onsite therapists and any visiting therapists who come to Canberra. The new site has a great boardroom with videoconferencing facilities which allows the staff to attend meetings offsite as well as provide telepractice sessions for those families that are not able to come to Canberra. Additional parking has also made this site more accessible to families who seem to like the new site too. What do you like most about your job? The thing I enjoy most about my job is the variety. Not only do I get to do different things during the day (assessment, mapping, habilitation), I also get to work with adults and families who come from a variety of cultural backgrounds. What has been your best experience? The best experiences are usually the ones that bring joy to the people I work with. A cochlear implant switch on is almost always an emotional experience and it’s always amazing seeing a young child’s reaction to hearing a sound for the first time or seeing a parent’s reaction when their child says their first word. Are you enjoying living in Canberra? I really enjoy living in Canberra. Strangely enough I enjoy the weather (even the cold) and experiencing the different seasons throughout the year. I like the fact that I’m close to the snow, beach, bush and not too far from Sydney either. I’m a member of the Canberra Yacht Club as well as the AACT Fly Fishers Club and am enjoying sailing on lake Burley Griffin and fly fishing in the Snowy Mountains. What more could I ask for? 6

The series provided a fantastic opportunity to share the latest in global thinking on candidacy guidelines for implantable hearing solutions, and discuss working together with these professionals to improve the quality of life for patients with hearing loss. We hosted over 220 attendees to these events, from the targeted regions of Penrith, Wollongong, Canberra, Liverpool and Cooma. There has been a noticeable increase in referrals from attendees – with many of these referrals assessed as cochlear implant candidates – reflecting the value of raising awareness about cochlear implants with professionals. We are continuing the success of the seminars throughout 2016. We intend to host events targeting the areas surrounding St George/Caringbah, Batemans Bay, Orange, North Ryde, Newcastle, Tamworth, Port Macquarie, Dubbo and Blacktown.

Important information From the troubleshooting gals: Lyn and Sue

Caring for your sound processor » Every day check all parts of your processor for dirt and moisture. Wipe with a soft dry cloth. Remove the battery and make sure all contacts are clean. » Check the microphone protectors for dirt and grime and replace as needed. » Store your sound processor at night in the dry-aid kit for 8 hours for best effect. If you don’t have a dry-aid kit you can use drying crystals in a small plastic container. Remember to replace the crystals frequently, every 2 months for DRiBrik, or if you are using CEDIS capsules, they change to white when they have absorbed maximum moisture and need to be replaced. Replacing microphone protectors

without pushing too far to the underside, so that there is a slight concave shape to the underside of the coil. In this way, the pressure from the magnet is spread across the stippled soft lining underneath the coil. If the magnet is too strong, it can cause a pressure sore over the implant and if the skin becomes broken there is a chance of infection. Please do check the site under the magnet regularly even if you have had an implant for many years, changes to the skin and hair thickness might mean that your magnet strength needs to be reviewed. Self adhesive Moleskin, a soft padding material can be put on the underside of the coil if your hair and skin has become thinner with age. Placing your coil on top of your hair instead of underneath it can also help cushion the coil if it becomes a little bit sore. The magnet can be unthreaded a little to relieve some pressure if it is too strong. You can even put a bandaid or small piece of soft gauze under the coil if you develop a sudden sore spot. Always see your GP if the skin is broken to get their advice.

Replace microphone protectors every 3 months or whenever they look dirty, or whenever you notice any loss in sound quality. Always replace both protectors at the same time. For the Cochlear Nucleus 6 and Nucleus 5 sound processor use the tool to lift out the old microphone protectors from your sound processor and then discard these.

To insert new microphone protectors use 7 8 the microphone protector applicator and lay this over the processor so the microphone protectors are aligned with the microphones. Press the microphone protectors all the way into the microphone holes one at a time and remove the applicator. What to bring to your appointment – programming the sound processor

» Microphone N578288-578285_1.02_Mic_Protector_Tool_Packaging_Insert_SC.indd 1

protectors if these need

changing » Remote Assistant » Back up/old processor » FM system

on your magnet strength!

The magnet that attaches the transmitting head should be checked frequently to ensure it is the correct strength and it is fitted properly in the coil. The magnet should be threaded well into the coil

12/03/2015 2:37:25 PM 12/03/2015 2:37:25 PM coil to your

Where to obtain replacement parts for your sound processor If you are eligible, you can obtain replacement parts by calling Australian Hearing’s cochlear implant call centre on 1800 131 339. You can also request replacement parts via email: cisupport@hearing.com.au or Fax on (02) 9419 8397. If you are not eligible for parts from 12/03/2015 2:37:20 PM Australian Hearing, contact the relevant device manufacturer’s customer service team. Cochlear – call 1800 620 929 or email customerservice@cochlear.com MED-EL – call 1300 744 782 or email office@medel.com.au Advanced Bionics – call 02 8858 1600 or email customerservice.au@advancedbionics.com 7

Your gift to SCIC Cochlear Implant Program is vital in order for us to continue to provide our crucial services. Did » » » »

you know? In 2015, because of our donors and contributors: We supported over 2850 implant recipients, and performed 432 new implant surgeries 48% of surgeries were performed in public hospitals 62 of our recipients were children under 16 receiving their very first implant 251 of our recipients were adults receiving their very first implant

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SCIC Cochlear Implant Program PO Box 188 GLADESVILLE NSW 1675 Bldg 39 Old Gladesville Hospital via Punt Road GLADESVILLE T 1300 658 981 F 02 9844 6811 E scicadmin@scic.org.au www.scic.org.au