SCIP Newsletter – June 2008 - Southern Cochlear Implant Programme
Contents
1. To take part in Loud Shirt Day and help even more deaf children simply register your com pany or organisation We ll then send you a Loud Shirt Day kit so you can make 19 Septem ber one of the best days of the year If your company cannot participate in Loud Shirt Day we d greatly appreciate it if you could make a donation to help give deaf childrena voice Please go to the following website for more information www loudshirtday co nz Winter ISSUE 4 JA il ea _ June 2008 Inside this issue Welcome Loud Shirt Day Adult Programme Update Paediatric Programme Welcome and Introduc tion Warren Estabrooks Audiotory Verbal Mas ter Class Warren Estabrooks cont Speech Processor Up grades My New Ear Short Story My New Ear cont Freedom Speech Proces sor Faults and Fixes Freedom Speech Proces sor Faults and Fixes Introduction Leonard Healy Phone Tips Support Groups Warranty Periods Staff Information 6 Southern COCHLEAR IMPLAN abvu tr Programme ADULT PROGRAMME UPDATE June 2008 Once again the adult programme growth has become a major focus for the Southern Hearing Charitable Trust This increased growth has meant that we needed to relocate again to larger premises The relocation has meant that the adult programme now has more space to accommodate two audiologists a rehabilitationist and administra tion staff We are very excited abou2. 7 PAEDATRIC AND ADULT PROGRAMME STAFF Pauline Cosgrove Haggerty Donna Sperandio Jill Mustard Neil Heslop Shirley Marshall Neil Heslop Audiologist Manager Paediatric Shirley Marshall Audiologist Joanna Lake Habilitationist Donna Sperandio Habilitationist Pauline Cosgrove Haggerty Administrator Phil Bird ENT Surgeon Daran Murray ENT Surgeon Address information Paediatric Programme Southern Cochlear Implant Programme c van Asch Deaf Education Centre Truro Street Sumner CHRISTCHURCH 8081 03 326 6009 0800 275 7247 Fax 03 326 5346 Phone Email phaggerty vanasch school nz Leonard Healy Anne Courtney Lisa Scott Penny Monteath Beth Kempen Beth Kempen Clinical Manager Audiologist Leonard Healy Audiologist Penny Monteath Rehabilitationist Lisa Scott Programme Administrator Anne Courtney Receptionist Office Administrator Phil Bird ENT Surgeon Daran Murray ENT Surgeon Address information Adult Programme Southern Cochlear Implant Programme for Adults SCIPA 249 Papanui Road Milford Chambers CHRISTCHURCH 8014 03 355 3041 0800 500 405 Fax 03 355 3045 Phone Email scipa xtra co nz Anne shctrust xtra co nz Lisa
3. be a great source of information for anybody interested in Cochlear Implants This website includes both paediatric and adult programmes www scip org nz On another note we would like to give special thanks to Combined Shuttles for their efficient and friendly service The adults who travel to our programme from out of town use this service frequently and we have had a lot of wonderful feedback from clients Contact details email skelly 2 xtra co nz Fax 03 3561685 Lisa Scott Programme Administrator er 6 Paediatric Programme a 6 Southern COCHLEAR IMPLANT PAEDiaATRic Programme WELCOME AND INTRODUCTION PAEDIATRIC PROGRAMME Welcome to the first paediatric programme Newsletter for 2008 The Ministry of Education is presently conducting a national review of cochlear implant habilitation services The review is being managed on behalf of the Ministry by Tricia Fitzgerald of Fitzgerald and Associates The first part of the review involved drafting a Principles document that once finalized will lead to a new service specifi cation Tricia Fitzgerald also conducted a Parent Forum for a group of Christchurch parents on the evening of 1 May 2008 at van Asch Deaf Education Centre The feedback provided by parents will be used as part of the final review document We will provide an update on the review in future Newsletters For the first time in many years the paediatric programme has a waiting list for cochlea
4. of battery operates by air circulating through small pin holes at the top of the battery resulting in a chemical reaction internally Removing the plastic tab from the top of these batteries allows air in to the battery that then starts the bat tery working The battery will continue to discharge once the plastic tab is removed EVEN IF NOT IN USE IN A PROCESSOR For this reason do not remove batteries from their pack until ready for use The average life of the 675 batteries in a Freedom speech processor is 3 days The implant will beep internally as the batteries run flat warning the recipient to make a change Change all 3 batteries each time When bat teries are first used take the tab off the top of each battery and leave them to stand at room temperature for 1 minute before putting them in the speech processor This will allow air to properly circulate in to the pin holes at the top of the battery and start the battery working The 675 batteries for speech processors cannot be checked with a battery tester in the same way batteries for hearing aids can be Speech processors draw more current than hearing aids and so a battery tester may indicate that a battery is healthy when it is not Rechargeable AAA Batteries The body worn controller uses rechargeable AAA batteries and these are supplied Rechargeable batteries have a useful life of approximately 12 months After this time they may not retain charge reliably Contact the paediatri
5. weeks afterwards To those with any doubts grab it embrace it and run with it Big thanks to my family and friends to Penny Rehabilitationist Leonard Audiologist I still have more questions Leo Thank you to you all for your never ending support love and encouragement at all times I hope you enjoy the journey as much as I am If anyone would like to contact me please feel free to do so My email address is memmilwrick xtra co nz THE FREEDOM SPEECH PROCESSOR FAULTS AND FIXES FOR FREEDOM USERS This article summarizes a number of common problems that we have come across with children who use the Freedom system Here we provide guidance on the sort of problems most likely to occur and how to rectify them This article complements the material provided in the speech processor user manual Parents and older chil dren should fully familiarize themselves with the user manual The user manual as well as providing advice with common faults is also a useful reference for all the user controls and connecting external devices such as MP3 players and FM systems Alarms and error messages The Freedom system has a series of error codes that identify that there is a problem with the speech proces sor See the user manual for these codes The most common error is H3 coil error or H1 flat battery or H2 low battery In addition to the error codes the red LED at the top of the tone hook on the speech processor will flash i
6. Bell Conference in Milwaukee Wisconsin between June 27 and 30 From late July of this year Shirley Marshall will go on maternity leave She expects to return to work here ona part time basis within 3 months Neil Heslop MNZAS CCC Audiologist Manager Paediatric WARREN ESTABROOKS AUDITORY VERBAL MASTER CLASS Sydney Australia April 2008 Donna Sperandio and Joanne Lake were invited by Cochlear Ltd to attend a Warren Estabrooks Auditory Verbal Master Class in Sydney in April Warren Estabrooks is an international speaker and consultant who lectures worldwide on Audi tory Verbal Therapy AVT auditory re habilitation childhood hearing impairment and cochlear implant habilitation Co chlear Ltd funded Warren Estabrooks to facilitate the two day workshop for certified AVT s or those training for their certification Twenty teachers speech language pathologists and therapists attended from Australia and New Zealand and the small group size allowed for lots of interaction and discussion Warren led a number of fast paced sessions which kept us on our toes as he fired questions at us throughout As part of the workshop we were all expected to deliver a 15 minute presentation including a 7 minute video of ourselves modelling techniques and strategies ina typical teaching session involving a child and parent We were asked to list our session goals and to analyse our strengths and suggestions for improvement After each presentation the
7. Southern Hearin EA Tud 6 So uth ern COCHLEAR IMPLANT Programme WELCOME HBHHRHBRHEHEHE RHE HERR RRR RR RE RRR RRR RRR RR RRR RRR RRR RR RRR RRR RRR RR eR eR eRe eee eee Trust Update The Southern Hearing Charitable Trust has had a busy six months The contin ued growth of the Adult Programme has meant that the premises at 417 Madras Street no longer met our needs The relocation to 249 Papanui Road has meant that the Adult Programme now has a larger clinic with space to grow wonderful amenities and car parking With the growth of the Adult Programme we have employed a new Audiologist Leonard Healy He will be a great addition to the SCIPA team The Paediatric Programme at Van Asch has also had some staff changes with Joanne Lake replacing Jill Mustard and doing a wonderful job We also wish Shirley Marshall all the best with the up and coming new addition to her family We hope that you are keeping warm and safe this winter and look forward to keeping you updated on the Cochlear Implant Programmes news Jeanine Doherty and David Kent Co Chairs Southern Hearing Charitable Trust Loud Shirt Day is the annual appeal of The Hearing House and the Southern Cochlear Im plant Paediatric Programme two charities who are dedicated to enabling deaf children with a cochlear implant to listen and speak like their hearing peers Last year more than 500 companies participated in Loud Shirt Day raising 70 000 for deaf children
8. and down the longer you are on the phone Some people report that they start off hearing really well but after a couple of minutes its not so good this is often gravity 4 USING TELECOIL POSITION ON YOUR PROCESSOR This is especially helpful when just starting to use the phone again It increases the volume as well as the clarity In time after lots of phone practice many people find they do not need to use the telecoil anymore It is best to answer the phone first and ask the person to hold while you change over to the T switch 5 TROUBLESHOOTING A common perception is that if you are not hearing well on the phone it must be YOUR problem This is not always the case If you have implemented all of the above and are still experiencing difficulties it is more than likely that the problem is coming from the other end This is when you need to troubleshoot COMMON CAUSES Person is ona fax phone A Person is on a digital phone Person is on a portable phone AND is possibly some distance from the base unit Person is wearing a headset where the mic is positioned under their chin rather than in front of their mouth There is excessive background noise at either end Person is speaking too quickly SOLUTION See if the person can change phones i e if they have a landline or fixed phone this is far easier to hear than a portable phone in most cases Get them to slow their speech down Move their headset to a better position Elimi
9. c programme for replacement rechargeable batteries P El EJ Geerdes PHONE TIPS A GUIDE TO SUCCESSFUL PHONE USE Penny Monteath Adult Rehabilitationist Your success when making or receiving phone calls is dependent on several factors I thought it would be worth recapping these as they are extremely important 1 CONFIDENCE AND BEATING THE FEAR FACTOR Not surprisingly these have a huge influence as to how people cope with using the phone Often we have terribly embar rassing memories of the last time we used a phone which was the end of our phone career before receiving an implant This could have been quite some years ago but the memories are often still very vivid To be a successful phone user we need confidence and the ability to get over the fear of stuffing it up 2 PHONE TYPE Your implant does best with the old technology Analogue phones with inbuilt telecoils Unfortunately the world is switch ing to digital which for you is not helpful Most retailers still stock some analogue phones you just need to ask ensuring that they also have inbuilt telecoils The UNIDEN SSE15 is a great phone and retails for approx 99 3 POSITIONING OF PHONE The receiver of the phone needs to be over the top of the microphone on the processor These microphones are situated just back from the earhook on the top If you are not in the right spot the person will sound miles away Also be aware that gravity pulls your h
10. e 26 March 2008 at 53 years of age and had appointments with Penny Phil Bird E N T Surgeon and I met Leonard Healy the Audiologist who would do my switch on and mapping I felt completely calm and positive and my friend actually mentioned to me later she was so surprised at how calm and collected I was about it all The operation was very straight forward and to be honest I breezed through it and never had a down moment I was out walking the day afterwards and flew home two days after the operation In between the opera tion and the Switch on I had a quick visit to the North Island to celebrate my goddaughter s 21 birthday and it was a world of total silence I had wondered to be truthful now how I would feel these few weeks in between but found I coped extremely well without by aid but then this is what I had more or less been doing for many years I did get quite a lot of questions asking me was I now able to hear as I had had the actual operation A few quick words to explain that no I hadn t yet had the Switch On I found less was best and not to go into things with too much detail My New Ear cont The day of Switch On dawned and I flew to Christchurch that morning feeling positive and happy that the day had finally arrived and I was more than ready for it It couldn t come quickly enough Two of my sisters accompanied me to Switch On along with a good friend and I totally recommend having close family or friends accompany yo
11. f there is a problem Long cable issues The Freedom long cable connects the speech processor to either the body worn or baby worn controller Over time this cable can suffer from breakages anywhere along its length Sometimes the breakages are visi ble as the outer plastic sheath tears Otherwise the breakage can occur within the cable and not be visible making it difficult to identify The most common breakage points occur at the extreme ends where the plug socket meets the speech proces sor or controller Problems with long cable breakages usually result in the speech processor turning off inter mittently or not turning on at all If your child s processor turns off intermittently check the long cable by first switching the processor on With the processor on gently bend and flex the cable along its length If there is a breakage within the cable the processor will turn off as it is bent or flexed at this point Replace the cable Short coil cable issues The short coil cable connects the speech processor to the implant The short cable can break in the same way the long cable does The most common problem points are at the extreme ends of the cable Short cable breakages usually result in the H3 message being displayed on the LCD of the speech processor and the red light flashing on the tone hook If this occurs first check that the cable is plugged firmly in to the speech processor If the error persists replace the short cable w
12. group and Warren critiqued our skills in the videoed session as well as our stated targets This feedback led to lively and stimulating discussion Warren encouraged us to think more about our specified goals and whether they were actually goals for the child ourselves or the parents He challenged us to think about writing our goals more clearly Donna and Joanne pictured with Warren Estabrooks Auditory Verbal techniques were discussed The use of the AVT hand cue led to lots of discussion Warren does not advocate the use of this technique any longer although many AV therapists still do Warren demonstrated the natural techniques he now uses to encourage children to listen and to imitate Conference General a WARREN ESTABROOKS AUDITORY VERBAL MASTER CLASS Cont During the two days we met teachers and therapists from a variety of settings in Australia and had the opportunity to compare programmes assessments and resources We were interested in how outreach programmes are provided for fami lies in outlying areas in Australia Of particular interest was a pilot programme looking at the use of video conferencing technology We watched a video of a therapist working and guiding parents in a play session in a videoconference setting During a lunch hour we had the opportunity to have a tour of the Cochlear Limited factory to see the various stages of the devices being assembled which was fascinating The whole focus of the
13. ith a spare If with the coil cable connected to the implant the error then disappears it is likely that the old cable has a break somewhere along its length General News Processor not responding to buttons on the controller On occasion a processor will not respond when buttons are pressed on the controller The processor will work but none of the programme sensitivity or other controls work and it won t turn off This is likely to be a processor fault The processor will need to be sent to VADEC for repair kez Bayonet connections The connection between the speech processor and the BTE baby worn or body worn controller is via a bayonet connection The connection is made by a 4 turn twisting action The connection is susceptible to breakage if the twist goes too far or if the processor is pulled off rather than twisted off The breakage usually occurs to the 3 small plastic lugs on the bottom of the processor Breakage results in the connection between processor and controller cable becoming loose This can result in the speech processor turning off or not functioning at all Poe AGTSP ZeniPower SS Parents and children should exercise care when disconnecting the processor to minimize the risk of damage to the bayonet connection 675 batteries The Freedom BTE baby worn controller requires 3 of either the ZeniPower or PowerOne variety of 675 bat teries These batteries are a Zinc Air type This type
14. nate the background noise Using the phone successfully requires confidence and loads of practise If you would like to come and see me for a phone session you are more than welcome just contact Anne at reception by phone fax or email E fre e SUPPORT GROUP CONTACTS CHRISTCHURCH DUNEDIN Penny Monteath Fiona Ali Email pennybayaud yahoo com au Email Fiona signalgroup co nz INVERCARGILL WELLINGTON Suzanne Miller Gilbert Hadfield Email owensuemiller woosh co nz Email gilbert hadfield paradise net nz FREEDOM amp ESPRIT 3G WARRANTY PERIODS 3 YEARS 1 YEAR 90 DAYS 6 MONTHS 3G Coil amp Cables BTE Battery Holder inside controller Processor BTE Controller Freedom Coil amp Cables Dry amp Store Unit Mini BTE Controller Freedom Rechargable Personal Audio Cables battery Cable ome fee Cable Ca e Se Se a ee INTRODUCING Leonard Healy Audiologist for the Adult Programme Hello Everybody My name is Leonard and I hail from Ireland I moved to New Zealand three months ago Previous to that I worked and studied in London for 3 years I am very pleased to have this opportunity to work with cochlear implantees in New Zealand I am enjoying the work the outdoors Christchurch the Kiwi way of life I am impressed by the quality of life in your country and the development of the publicly funded cochlear implant program I hope to be here for some time Leonard
15. r implants We are funded to provide up to 15 cochlear implants for children each financial year which runs from 1 July to 30 June Due to a large number of referrals over the past 12 months we provided the last of our 15 implants in late Febru ary with some 3 months still remaining before a new allocation of funding We currently have 7 children waiting for implant funding Joanne Lake who is fulfilling Jill Mustard s role while she is on sabbatical has now been with us for 4 months By now many of you will have met her during your scheduled visits She will be attending a Paediatric Cochlear Im plant workshop in Melbourne in August at the invitation of Cochlear Limited Joanne has also provided a report here on an AVT workshop run by Warren Estabrooks held in Sydney in early April Warren Estabrooks for those who don t know is a pioneer in the field of Auditory Verbal Therapy Donna Sperandio is currently away until early July combining work at conferences with a personal holiday She will be attending the NHS2008 conference in Lake Como Italy between June 19 and 21 This conference is held every 2 years and is the major conference on Newborn Hearing Screening internationally With New Zea land currently rolling out universal hearing screening it is likely that increasing numbers of very young children will be referred to the programme it is important that we are well prepared for this At her own expense Donna will also be attending the AG
16. s faced by adults Table 1 Predicted Speech Processor Upgrade Numbers for Children CLC At this point we are no longer able to upgrade speech processors routinely every 5 years as we have in the past A replacement processor can now only be funded ona needs basis when it fails and is uneconomic to repair We have a small number of children still using the Sprint body worn device and they will be upgraded to an early level device will still be upgraded at 5 years My New Ear By Mary Ellen McIlwrick The first signs of hearing loss started as an eight year old and I was shortly after fitted with a hearing aid in one ear I wore an aid right through until my cochlear implant operation on the 27 May 2008 When I was fifteen I contracted Rheumatic Fever and from then on my hearing deteriorated quite rapidly and by the time of my opera tion in March I was mainly just lip reading all conversations Consequently a great majority of my life has been lived as a profoundly deaf person To be truthful I doubt I realized how severe my hearing loss actually was I lip read well and was able to carry on my life this way with never ending support from family and friends Life however was exhausting and career options fairly limited and social occasions could be hard work and there were always some people who were very difficult to communicate with My eyes were my lifesaver and my best friend at all times I flew to Christchurch during Ma
17. so much more relaxed and so much less anxious as the days roll by For the first week I found it almost difficult to take it off at night in case it wasn t there the next morning when I woke in There were times when I did wonder if I was actually dreaming and would need to reassure myself that it was all real The last five weeks have been totally packed with exciting and wondrous occasions Turning on the TV and hearing songs being sung and music playing going walking in the bush and hearing rivers and streams run walking by the sea and hearing the waves rolling walking in the park and hearing the birds chirping away It is all never ending and totally joyful and won drous I wake each morning with joy eagerness and anticipation of what the new day will actually bring My choices in life are beginning to expand and so far in five weeks it has surpassed my wildest dreams and I would do it all again tomorrow I feel I am on this amazing journey along a road never travelled before and the scenery so far has been pretty stunning and the road ahead although not known looks pretty exciting and inviting My implant is now my best friend along with my eyes in fact I believe my eyes are feeling rather neglected these days as my new ear fights them for room For those at present on the waiting list the time will fly by and you have many wonderful and joyful moments ahead of you Enjoy them to the full and be kind and gentle to yourself during the first few
18. t this move and look forward to seeing all our current and newly referred clients in these rooms Due to the expansion of the clinic we have employed a second audiologist Leonard Healy from Ireland he is a won derful addition to our team He has written an introduction further on in the newsletter The referrals are still increasing in volume as news of our success spreads The current wait for assessment is larger than we would like but we are hopeful that with a second audiologist these wait times should decrease rap idly We are attempting to assess 8 potential candidates each month We have found in general that adults re ferred have a high candidacy rate therefore our surgical waiting list will keep growing We are please to announce a one off amount from the Ministry of Health for 13 more implants which will help this ever increasing surgical waiting list Our Audiologist Beth Kempen and Rehabilitationist Penny Monteath attended the 10th International Conference on Cochlear Implants and Other Implantable Auditory Technologies This was held in San Diego in April 2008 Both Beth and Penny enjoyed the conference and although rushed found it was very informative There was a huge emphasis on improving music listening for implantees and a new trend in implanting people with severe tinnitus to suppress it which they found very interesting We are also pleased to announce that in the very near future we will have an updated website This will
19. u as not only is it an emo tional and intense few days but the joy of also hearing sounds for the first time is immense I truly wanted to embrace my new hearing world and share it with the people closest to me especially as those same people had been along on my journey with me during my profoundly deaf years One of my sisters told me it was a real privilege being there with me and shar ing it all I had geared myself up pretty well not to expect too much on Day one and yes initially it first sounded like someone was it was going to be like and what had I walked into These moments were however brief and Day two and Day three were joyful days as I began to take in more sounds and voices and hear some people chatting and putting voices to names and realizing no not everyone sounds the same as I had thought During my three days of Switch on in Christchurch I had a practice on a telephone with Penny and this was a huge confidence test for me My previous phone encounters had been rather fearful as it is practically impossible for a profoundly deaf person to use a telephone and I had resigned myself to the fact my telephone days were over many years ago Five weeks down the track and my cochlear implant has already changed my life in so many many ways I had absolutely no idea how much I missed hearing wise as a profoundly deaf person How much easier life is being able to hear people and be able to join in conversations with others I am already
20. workshop was about raising the bar in terms of our practise and the practical aspect of the workshop as well as the small group size certainly gave us the opportunity to do this Donna and Joanne aim to share ideas from the workshop on their visits throughout the regions Joanne Lake SPEECH PROCESSOR UPGRADES In a Newsletter in the Winter of 2004 we published an article about speech processor upgrades At that time we explained that funding for upgrades to speech processors was limited and that at some point there would come a time when the number of recipients requiring upgrades to their speech processors would exceed our ability to fund them We have now reached that point Historically our recipients children and adults have been provided with replacement processors every 5 years This was sustainable in 2004 when we had 30 adults and 60 children on our programme We now have 110 children and probably close to 170 adults on the programme With the growth in numbers there has not been a growth in funding for replacement processors Also there has not been any recognition by the Ministry of Health that cochlear implant recipients require more than one speech processor upgrade over their lifetime The table below shows how many speech processor upgrades would be required for children if we were to replace everyone s speech processor every 5 years It should be noted that this table includes figures for CHILDREN ONLY A similar situation i
21. y 2006 for an assessment for a Cochlear Implant and met with Penny Monteath Rehabilitationist an Audiologist and with Daran Murray E N T Surgeon I returned home to Invercargill after a couple of days of appointments cautiously optimistic that my name would be added to the Adult waiting list but had decided to accept whatever the result was as what would be would be It was with great excitement that I received confirmation later in the year 2006 that my name had been added to the waiting list for this cochlear implant I had been advised it would be two to three years Later on in the same year I received new correspondence advising that the adult waiting list had grown quickly and funding was limited and the waiting time could now be 5 to 6 years Fortunately during 2007 additional funding was allocated by the Government to carry out more adult implants and to reduce the rapidly growing waiting list No doubt the Gov ernment was looking to election year 2008 I received the news towards the end of 2007 that my cochlear implant operation would most likely be in the first 6 months of 2008 so I celebrated Christmas and New Year with family in Wanaka contemplating where I would be 12 months down the track i e Christmas 2008 I honestly hadn t expected to hear so soon and both my family and I were truly delighted with this news and all my thoughts were positive ones on what the next few months would bring to my life I headed to Christchurch on th
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