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MAY 2010 
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In this issue :
EURO-CIU European Association of Cochlear Implant Users 16, rue Emile Lavandier L - 1924 Luxembourg Fax: + 352 44 22 25 eurociu@implantecoclear.org |
MESSAGE FROM THE PRESIDENT
In this newsletter our new logo, which was presented to the delegates of the associations during our General Assembly held in Varese on April 10th, 2010, is being used for the first time. At its meeting in June 2009 the EURO-CIU’s board decided to modify the image of the association. The project was entrusted to a Spanish designer with whom the Federation AICE had worked. With this new logo, EURO-CIU wants to give the image of a dynamic, modern European association. On behalf of the board I would like to thank, in particular, our Vice-President, Maria-Teresa Amat, for her personal interest in the realisation of this project. We hope that our full members will be able to identify with this new image. With my best regards Gilles COGNAT MESSAGE FROM THE EDITORYet again we have had an excellent response from our members and readers to our appeals for contributions. We are delighted to have the first contribution from Norway and also the manufacturer, Neurelec. I must apologise for the slightly late appearance of this Newsletter which should have appeared last month. We are trying to publish a new edition every two months to ensure that we can find space for all the material we receive but at the same time keep the Newsletter to a reasonable length. One or two people have commented that they are unable to view the photographs in the Newsletter. From now onwards you will see, at the top of the Newsletter, a note saying that if you have trouble reading the emailed Newsletter or seeing photographs click on the highlighted words and then you will be able to view the Newsletter and photographs in your browser. Alison Heath Please feel free to forward this Newsletter to your colleagues, should they not get a copy of their own. If you would like our Newsletter emailed direct to your own email address, just send an email to Brian brian.archbold2@btinternet.com and we can add your name to the list. EURO-CIU - future dates
2011 Symposium and General Assembly will be hosted by Cochlea Implantat Austria (CIA). It will be held in Alpach, a beautiful Alpine village near Innsbruck, 29th-30th April 2011 2012 General Assembly hosted by the EKLVL (Estonian Cochlear Implanted Support Group) will be held in Tallinn, Estonia 13th – 14th April 2012 WORLD CONFERENCE FOR THE HARD OF HEARING IN WILL BE HELD IN BERGEN, NORWAY 25-28 JUNE 2012. You can make a mailing list registration at the conference website www.ifhoh2012.no RESULTS INQUIRY by Dr Ruud van Hardeveld
The presentation given by Dr Ruud van Hardeveld at Varese has been issued as a separate Supplement to this Newsletter, and you will receive this as a separate e-mail. If you would like a pdf copy of Ruud's PowerPoint slides, please e-mail brian.archbold2@btinternet.com 15TH GENERAL ASSEMBLY at Varese - 10 April 2010
The meeting, which was hosted by AGUAV (the Varese cochlear implant users association), was attended by a large number of delegates from all over Europe. It was the largest meeting to date of EURO-CIU. On the two preceding days a number of delegates took advantage of the kind invitation to attend Dr Sandro Burdo’s International Workshop: Rehabilitation Strategies and Cochlear Implants which attracted rehabilitation specialists from several countries. There were some lively workshops on topics such as mainstream education and the place of music in rehabilitation which revealed the prevalence of a variety of practices in response to the educational systems in different countries. Varese is an attractive little town set in the foothills of the Alps. The meetings were held in the stately Villa Ponti (photo) which is set in beautiful parkland. 
(Photo: Dr Sandro Burdo & Alessandra Dipietro) Before the business part of the meeting commenced, Alessandra Dipietro gave an interesting account of the cochlear implant situation in Italy. She said that the Varese team had started doing cochlear implants in 1991 and now did about 17% of the total number of implants in Italy. They specialised in small children and also were the only team which did bilateral implants. Cochlear implants in Italy are funded by the Health Care System but, normally, they will only fund one implant. There are 7,293 cochlear implant users in Italy and of these 320 have bilateral implants. There are seven centres doing more than 25 operations a year and a further ten small centres which do between 10 and 25 a year. The cochlear implant users association of Varese (AGUAN) has 739 members of which 428 are children and 311 adults. As there have been no special schools run by the state - though there are a few private schools for the deaf - in Italy since 1980 the younger generation of deaf people do not have access to sign language. Deaf people under the age of thirty rarely use sign language. The day ended with the delegates being taken on a tour of an interesting art exhibition in another stately house where they also enjoyed a splendid meal. FROM AUSTRIA - OeCIG
We are very pleased to say that the Austrian CI association, OeCIG, is now up and running again. The OeCIG was founded in 1986 by Franz Wimmer, the first Austrian patient of Prof. Ernst Lehnhardt to have a multichannel cochlear implant. After his decease in 2003 the association went through a difficult time. Presently, however, it has become active again and a completely new website can be visited at www.oecig.at . One of the new projects (June 2009) is the start up of an information desk for hearing impaired at the ENT department of the county hospital in Salzburg. The desk is well supplied with information with, among others, brochures of the three sponsors (AB, Cochlear and Med-EL) and demo-suitcases. The desk is operated by CI users whose advice is based on their own experience. Also information about insurance policies is available. Psycho-social problems are among those most frequently brought to the information desk. The advice given is based on a jointly developed approach. The participation of a CI user who is a psychologist is of great help in these cases. The fact that the CI users, who respond to the enquiries, can fall back on their own personal experiences to help in solving problems greatly helps to clear up any uncertainties and to reduce fears and makes the advice given much appreciated. Summary of a contribution by M. Öttl and E. Reidl, vice-president of OeCIG. FROM FINLAND - LapCI ry: the Finnish CI-children´s association
(Photo: Minna Mäkelä & Päivi Tuuli) For the first time LapCI ry was represented at the Annual Meeting by three parents; Päivi Tuuli, Minna Mäkelä and Pirkko Haikara. Päivi Tuuli made a presentation on behalf of the association. The association was founded in 1999 by parents who wished to work together for the benefit of their children. Lapsi means child in Finnish. The association now has 160 members. In total there are 636 users in Finland of whom 249 are children. In Finland there are five centres for cochlear implantation but only one does bilateral implantation for all children. Cochlear implants are funded by the municipalities through regional hospitals.
Events held include the following themes: music; emotions; adaptation strategies of siblings and cued speech. FROM THE NETHERLANDS - Bilateral cochlear implantation by Juke Westendorp, Commission Bilateral CI for Children
(Photo caption - "The Netherlands is lagging behind ..." In the Netherlands bilateral cochlear implantation (BCI) is not paid for by the national health insurance (‘basisverzekering’- basic government insurance for all inhabitants). Only patients who have become deaf because of meningitis have no problems getting their BCI reimbursed. Since January 2010 OPCI (the independent Dutch platform for cochlear implant users) has been pressing on the authorities to change this policy. The first and most urgent step is to ensure that children can get bilaterals if they cannot benefit from conventional hearing aids. Many letters have been sent to the minister of health and the parliament. Also OPCI has quite successfully gaining the support of the media for their cause. In May OPCI will be talking with the ‘College van zorgverzekeringen’ (Executive Committee on Basic Insurance), the authority that decides which medical interventions are paid for by the national health insurance – and which are not. Until now the ‘College van zorgverzekeringen’ has argued that there is too little evidence that BCI is an effective intervention. OPCI thinks this is very irresponsible; experts worldwide are convinced that BCI is an effective and very helpful treatment for profound deaf children. Of course statistically the numbers are small, but this is no surprise and does not mean that BCI is a controversial intervention. Parents, teachers of the deaf, in fact anybody who takes the trouble to look into the subject are easily convinced, and then shocked when they realize that deaf children who do not get the best treatment at an early age, will have their development affected. Luckily, recently published papers (2009, 2010) from the Leuven University of Belgium (Wieringen, van Deun, Scherf, Wouters et. al.) do provide ‘real’ scientific evidence of the benefits of BCI in children. Therefore OPCI is now optimistic that the ‘College van zorgverzekeringen’ will change the policy very soon. In the meantime, some hospitals are arranging bilateral implantations for young children. Sometimes they persuade the insurance companies to pay, and sometimes the funding ‘is arranged for’. This makes parents from other parts of the country feel their children aren’t getting equal treatment. In 2009, 25% of all children implanted in the Netherlands got BCI’s. But many are the stories of parents whose insurance company refuses to pay. Parents are getting really angry, especially now that the U.K. and Belgium have recently changed their policy. The Dutch authorities just seem to be ‘sitting on their money’. But OPCI argues that saving money by postponing BCI for children, will increase expenses in the future, because unilaterally implanted children are going to need an expensive education and will have less chance of becoming normal tax-paying citizens when they grow up. FROM THE NETHERLANDS - Genetics of deafness: a solution is in sight
(Translation from a website notice of University Medical Centre St. Radboud) Within a few years all 150 to 200 genes responsible for deafness will be identified if they contain failures in their DNA. This is what is forecast by genetics researcher, Dr. H. Kremer from the ENT Department of University Medical Centre St. Radboud in Nijmegen, the Netherlands. She is leader of an internationally famous research group which discovered various genes and dozens of gen defects in the area of deafness. In the Netherlands all new born babies have a neonatal hearing test. Each year about 200-300 babies are found to have a hearing impairment. About 50% of the impairments are due to a non-genetic cause, such as an infection. The other half is due to genetic factors. The genetic background of hearing impairment has been researched at the UMC St. Radboud for the last few decades. Recently Dr. Kremer’s research group discovered 3 new genes responsible for deafness. The group had already found various genes and dozens of gen defects. Currently the most recent discoveries are available on- line on the website of the leading genetics journal, "The American journal of human genetics". Dr. Kremer expects research into the hearing impairment genes to accelerate as a result of a new, rapid detection technique called the "next generation DNA sequencing, NGS" (unknown up to now) which is available at the UMC St. Radboud. This makes the rapid analysis of large parts of the human genome possible. Thus deviations in the DNA can be found within a period of a few weeks whereas in the past this would have taken several years. According to Dr. Kremer this is a very important development in research into the genetics of deviations in hearing. The UMC St. Radboud possesses the largest database on congenital deafness in the Netherlands. This database has been built with the help of a great many Dutch families in which deafness occurs. This data base links results of blood samples of deaf and hard of hearing patients and of their family with clinical data on the severity and nature of the deafness and other medical relevant information. Shortly they will start to combine the rapid analysis of DNA from this data base with the NGS technique. It is expected that, within a timeframe of a couple of years, the complete scale of genes related to deafness occurring in the Dutch population will be known. Most deaf or hard of hearing children are born into families of which the parents are hearing. For most parents of a baby with a congenital hearing impairment the result of the NHS comes as a complete surprise. Due to these advances in the genetics of deafness it will be possible to determine what DNA failure is behind the disease very soon. This does not mean that treatment will be possible but it will take away a lot of uncertainty. The physicians will be able to give more accurate information about the prospects of the child and the possibility of other (further) children being deaf. Ruud van Hardeveld FROM NORWAY - Cochlear Club in Norway (Parents Association for cochlear-implanted children)A new board has recently been elected with Fateh Mirza and the chair. They have sent us this message. [Editor] The Association is a nonprofit making organization with the following aims: • To protect the cochlear-implanted children's interests. • To develop a dialogue between families with CI children and support for all who wish for help or advice in connection with cochlear implant implantation. • To promote understanding of cochlear implants in the community through a positive dialogue between society, media, deaf organizations, the CI team and other involved agencies. • To develop a general competence in this area. • To hold meetings and social gatherings for members. FROM SPAIN - Cochlear Implant Day Celebration 2010 - Making the theatre accessible to deaf people
On February 25th, the Federación AICE celebrated the International Cochlear Implant Day with various events throughout Spain. Every act had one thing in common: the reading of the Manifesto called “Cochlear Implant Day”. In Barcelona it took place a play with subtitles called “This is no life” by the Jove Calassanç Teatre Troupe. This event was sponsored by Advanced Bionics. More than 200 people attended, having among them, parliamentary representatives, representatives of various Ministries of the Generalitat de Catalunya, Barcelona City Council and various social institutions in the world of deafness including the President of the Spanish Federation of Deafblind. After the play, one AICE’s member and cochlear implant user said: "I want to thank and congratulate AICE and its team for inviting us to attend the play. People who suffer from hearing impairment could follow the whole performance perfectly thanks to the subtitles that were transcribed in real time on a screen. It was an interesting and pleasant experience that we hope will happen again on future occasions." To commemorate the 53rd anniversary of this technical development, events were also held in Andalusia, Aragon, Pamplona, Valencia, Mallorca, Canary Islands, Castilla-La Mancha and Madrid, with large numbers of people attending them. FROM SPAIN - Cochlear Implant Day Celebration 2010 - Press Digest CI Day
The International Cochlear Implant Day was taken up by different media, all over Spain, announcing the events and the different activities put on in support of the “Cochlear Implant Day”. Media on disability Among others, these are the media which gave publicity to the CI Day Celebration:
General Media: Among others, these are the media which also publicised the CI Day Celebration:
FROM THE UK - Another successful CICS weekend
(Photo: James Downes (left) and Sarvesh Thiruchelvam (right) with Jeremy Millensted of the Great Britain Deaf Football Team) Following two really successful weekends for CICS families at Alton Towers, a theme Park in the North of England, we decided to hold a similar event in the South. In April a group of families got together for a busy weekend at Chessington World of Adventures. We stayed in the Holiday Inn which was literally at the gates of the theme park. Highlights for the children began as soon as they entered their family bedrooms to discover they had their own sleeping section in the bedroom with their own television above the beds. We met up briefly on the Friday evening to distribute CICS goodie bags to the children and most people wisely opted for an early night to prepare for what they knew would be an action-packed day on Saturday! We were able to enter the theme park half an hour before it opened and had special tickets enabling us to bypass the queues for the rides. All ages were catered for: a small zoo for the younger children and nail-biting roller coasters for the older ones. The weather was perfect and several parents opted to sit in the sun and relax. It was wonderful to see the CI children and their siblings mixing and making new friends. There was more fun in store for Saturday evening: a sit-down meal for all the families followed by a marvellous magician who managed to keep the children enthralled for nearly an hour, giving everyone an opportunity to digest their dinner before a very lively session on the dance floor with a DJ who got everyone involved with the latest moves. On Sunday morning we had a private “meet the animals” opportunity, but for some of the children the excitement of this was overshadowed by the discovery that the Great Britain Deaf Football team were also in the hotel and kindly agreed to have some photos taken with the group. As if all this wasn’t enough, there was then a session in the hotel’s swimming pool for those who had the energy! We think we can safely say that a good time was had by all, and the fact that families travelled from as far as Scotland and the Isle of Wight for the event just shows the importance that families place on being able to meet up with others who have children who use cochlear implants. FROM THE UK - Comparing the communication skills of young children with bilateral cochlear implants with those with unilateral cochlear implants: the results of a European study, by Margaret Tait, The Ear Foundation
(Photo: Dr Margaret Tait) Margaret Tait of The Ear Foundation recently completed research with children and staff from the Nottingham, Stockholm, Nijmegen, and Leiden Implant Programmes and children from KIDS, Hasselt, Belgium. The study aimed to compare the pre-verbal communication skills of two groups of young implanted children: those with unilateral implantation and those with bilateral implantation. It assessed 69 children, 42 unilaterally and 27 bilaterally implanted, with age at implantation less than 3 years. The pre-verbal skills of these children were measured before and one year after implantation, using TAIT Video Analysis. TAIT Video Analysis has been found able to predict later speech outcomes in young implanted children and it measures vocal turn-taking, autonomy, and gestural turn-taking and gestural autonomy. It also assesses the development of non looking vocal turns, which provide evidence of auditory processing in children before and after cochlear implantation. Before implantation there was no significant difference between the unilateral group and bilateral group. One year after implantation there was a strong significant difference between the groups in vocal turn-taking and non looking vocal turns, with the bilateral group outperforming the unilateral group. With regard to gestural turn-taking and gestural autonomy, there was a strongly significant difference between the two groups 12 months after implantation, with the unilateral group having the higher scores. When looking at non-looking vocal turns one year after implantation there was significant difference in the groups, in favour of the bilateral group. Margaret’s study, carried out with the help of several European centres, supports bilateral implantation in very young profoundly deaf children who have insufficient hearing to use a conventional hearing aid in the contra-lateral ear. These profoundly deaf bilaterally implanted children were significantly more likely to use vocalisation to communication and to use audition when interacting vocally with an adult, compared with unilaterally implanted children. There was no significant difference between the groups before implantation. We are very grateful for the support from Deafness Research UK enabling this research to happen and for all those who participated in the centres. We hope this research will help to support the profession of simultaneous cochlear implantation in young deaf infants, where it is audiologically appropriate. This work is reported in the International Journal of Paediatric Otorhinolaryngology : Tait M, Nikolopoulos TP, De Raeve L, Johnson S, Datta G, Karltorp E, Ostlund E, Johannsen U, Van Knegsel E, Mylanus EAM, Gulpen PMH, Beers M, Frijns JHM (2010) Bilateral versus unilateral cochlear implantation in young children. Int Jnl Ped Otorhinolaryngology, 74, 206-111 TAIT Video Analysis is well recognised as a very useful measure in looking at the developing communication skills of young deaf infants and training materials and its use are available from The Ear Foundation, as part of the Nottingham Early Assessment Package, with a training DVD, the development of which was supported by Cochlear Europe. Information from The Ear Foundation website: www.earfoundation.org.uk ADVANCED BIONICS launches ClearVoice in Europe, Asia and Canada
The industry’s newest, advanced innovation in high-performance hearing, ClearVoice is a revolutionary sound-processing strategy built on AB’s proprietary HiRes Fidelity 120® technology. ClearVoice has been designed to automatically analyse and adapt to each listening situation that recipients encounter throughout the day, separating the distracting noises from speech so that communication is easier. The technology was developed to help recipients communicate confidently in a variety of challenging listening situations, including restaurants, cars, and classrooms — without ever needing to change a program or make an adjustment to their sound processor. AB offers an online demonstration of ClearVoice at www.BionicEar.eu This technology from AB is designed to provide recipients with these important benefits:
Now with the addition of ClearVoice to Harmony’s HiResolution® Sound, AB has once again engineered a breakthrough in sound processing that enables recipients to hear their best. To learn more about upgrade opportunities, contact Advanced Bionics Europe at +33 (0) 3 89 65 98 00, email at europe@advancedbionics.com or online at www.BionicEar.eu . MED-EL - 20 Years of MED-EL - Anniversary Celebrations in Innsbruck on 19 March 2010
In Innsbruck, on the 19th of March 2010, MED-EL celebrated 20 years of success. To mark the event, founders Ingeborg and Erwin Hochmair invited long-standing partners, patients, and employees to a festive evening in Innsbruck’s Congress Centre. Among the 800 invited guests were well-known representatives from politics, business and medicine as well as the very first user of a MED-EL hearing implant system. Ingeborg Hochmair, founder and CEO of the company, expressed how proud she was of the company’s development over the last 20 years “together with our employees, as well as our many partners from the clinical field, we have created a successful, worldwide company that has opened up the world of hearing to people all over the globe”. The idea of MED-EL originated from a university research study in the 1970’s, and in March 1990, the first 3 employees were hired who consequently still work for the company today. At the anniversary celebrations in Innsbruck, Ingeborg and Erwin Hochmair honoured the numerous pioneers and partners who have made the success of MED-EL possible. A festive evening meal, as well as several performances rounded off the celebrations. NEURELEC - new identity
Neurelec’s new design matches its commitment and missions. Its new logo is more modern and designed in the shape of a colourful nerve cell symbolizing Neurelec’s main industry: the development of cochlear and neuro-stimulation devices. Day after day, Neurelec uses its experience and know-how in the bio-medical industry to offer patients who suffer from severe to total hearing loss very high standard technologies. Hearing widens people’s vision of the world and offers a new approach to life. People enjoying an implant system do not have to guess what happens around them, they can see it! It is what Neurelec’s new communication and strapline “See, Feel, Hear, Live” underlines. Neurelec will be uniformly recognised throughout the world as a caring and very supportive entreprise. Neurelec’s accessories for a better understanding in public areas The Digisonic® BTE, Digi SP processors have an auxiliary socket that accommodates various audio accessories such as FM cable, Telecoil, or audio cable. Note: The person in charge of the adjustment must be consulted before using any audio accessories. This person activates the auxiliary socket by defining a specific program that patients can start at convenience. If the auxiliary socket is not activated, no sound will be heard from the devices. The audio cable It is compatible with various audio devices. You can connect your sound processor to audio equipment powered by batteries any time you wish to listen to music or sound from a music player (MP3 device, Walkman ...). Note: Beware of using the audio cable to connect to devices plugged into an electric socket (TV, music playing on a computer). An extra accessory (infrared system, for instance) is needed. Volume can be easily adjusted with the thumbwheel. Neurelec’s audio cable can also be used for the telephone. A phone adapter is needed and can be found in various brands (LG, Nokia, Motorola, Samsung, Sony Ericsson). FM Cable It gives access to various FM systems. These systems, which comprise a transmitter and a receiver, are used to transmit sound over a distance without impairing it. FM systems help you to follow a conversation, a meeting or a lecture easily by enhancing the comprehensibility and the listening quality. Neurelec’s FM cable is required to use the MicroVox system from Phonak or the Phonic Ear Solaris. Telecoil Also known as a magnetic induction coil, the Telecoil allows you to receive the sound transmitted by a magnetic buckle integrated into the emitting acoustic device (for example: telephone, cushion with magnetic buckle, etc.) Thanks to this audio accessory, patients with a Digisonic® BTE or Digi SP sound processor can enjoy phoning, go to cinemas, theatres and other public places equipped with induction coil transmitters. Once defined onto a program by the person in charge of adjustment, the Telecoil can be easily activated by switching to the specifically defined program. For further information on these products, please contact Neurelec. Neurelec headquarters 2720 Chemin Saint Bernard |
| EURO-CIU · 16, rue Emile Lavandier · L - 1924 Luxembourg · Fax: + 352 44 22 25 · eurociu@implantecoclear.org | |