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Flashlights from EURO-CIU Workshops and Annual Meeting in Budapest April 11/12th 2014

Dr. Parwis Mir-Salim, Vivantes Clinic Friedrichshain, Berlin, Germany

Dr. P. reported that in Germany there are now 3.500 CI surgeries p.a.; 70% are for adults.

Reasons for deafness are also presbyacusis, noise damage, Morbus Menière, sudden hearing loss, trauma etc.

Candidates with speech perception < 40% at 65dB qualify for CI.

Single Sided Deafness is a new indication.

Patients’ expectation and costs are decisive factors!

Dr. P. prefers to perform bilateral CI simultaneously, the advantages are:

There is only one surgery and one rehabilitation process.

Bilateral CI offers 3D hearing, no head shadow effect, hearing with two CI is “physiological”.

Performing the so-called “minimal invasive” surgery means to make a small incision, but otherwise the surgery is still the same.

He believes that the “round window approach” is preferable to the cochleostomy, it is better for patients with residual hearing.

His oldest patient is 93 years.

As future trends he sees “self fitting” for the patients, better preservation of residual hearing, thinner electrodes, new speech processors.

Dr. P. supports Prof. Maccharia in his CI programme in Nairobi, Kenya.

 

Prof. Imre Gerlinger, University of Pècs, Medical School Department of Otorhinolaryngology, Hungary  reported about CI surgeries in cases with various anatomical anomalies.

He referred to a publication of Levent Sennaroglu, 2002 and showed the different categories of malformation.

In cases of complete aplasia of the labyrinth or the cochlea it is an indication for an Auditory Brainstem Implant and not for CI. In Hungary only one ABI was performed in Debrecen, many years ago. It is a rather rare indication.

Prof. G. stated that they have strategies to find the right implant, i.e. electrode for various cases.

 

Dr. phil. Silvia Zichner, Speech therapist, linguist, Director CIC Berlin, Germany

This rehabilitation centre was founded in 1999. They have a cumulative patient base of 800, 380 children (50% of these are bilaterally implanted) and 420 adults (71 of these bilateral).

On average they get now 20 children p.a. and 60 – 80 adults.

The children are between 2 and 3 years old, adults between 18 – 93 years.

Out of the children 3% are bimodal, 25% multilingual, 23% multi-handicapped, 7% have deaf parents,

9% are non German speaking, 3% are deaf born.

In the team of this CIC are 22 professional groups.

Dr. Z. emphasized the necessity of creating a secure atmosphere in the fitting room and the importance of how professionals, patient and parents / family are placed.

As an example she showed the wrong “feudal setting”, which signals hierarchy, barriers, untouchability /distance and arrogance.

The right setting is with appropriate distance between all participants of the fitting session, meet at the same eye level and transparency.

According to Dr. Z. there should not be too much preparation but also not a lack of preparation.

“Children are not small adults”!

Information should be provided step by step.

She then referred to research done by Dr. Berger on NRT (Neural Response Telemetry) which serves as a basis for the first fitting and for further adaption of the programme.

Dr. Z. explained that a useful NRT function is only available with the Nucleus Cochlear Implant system.

Signs for over stimulation are:

Pronouncation is unclear, child is aggressive, perceives everything too loud, speech processor is not worn during the whole day, voices are perceived as too high pitched, single sounds cannot be well understood.

 

Dr. Ferenc Toth, Semmelweis University Department of Rhino-Laryngology and Head & Neck Surgery, Szeged, Hungary

presented for Prof. Jozsef Jori, retired clinic director who was unable to attend due to a health problem.

The new director is Dr. Laszlo Rovo.

His topic was “Bone conduction and other ear implant surgeries”.

 

In the afternoon there were three workshop sessions in parallel.

Adult rehabilitation

Psychological aid for CI candidates, users and their families

Running successful CI centres, exchanging experience

 

Sue Archbold PhD, The Ear Foundation, Nottingham, UK

She presented about the activities of the Ear Foundation and presented “Soundboard”, which is used by many German teachers as well.

She then explained that small babies prefer the mother’s voice, the family language, familiar stories, speech as compared to others sounds.

A 7 hours old baby prefers to look at the mother, a 6 weeks old baby smiles already to the mother’s face and voice.

D. Luterman said in 1999 “To be a parent means to be scared”, parents feel to be inadequate, anger, guilt, vulnerability, confusion, they need to adjust to emotions, come to terms with the diagnosis, bonding.

The best information they can get is from other parents via the WEB!!!!!

In the early time parents need a lot of emotional support, less information and decision making tools.

This is changing over time.

It is very important to know what Parents want before and after the implantation of their child to do adequate counseling.

Dr. Zichner informed the group that in the CIC in Berlin CI-recipients with a short-term deafness get 13 appointments and with long-term deafness 27 appointments.

After that intensive initial period they come 1- 4 times per year.

They offer fittings, technical training to learn how to use the various accessories and all the equipment, they have single and group hearing training, telephone training, medical assessments, pure tone and speech audiometry, training of communication strategies and music.

Every second month CI-recipients meet in the CI Café.

There is one member in the team of the CIC in Berlin who is multilingual (she speaks German, English, Spanish, French, Italian, Polish and Russian).

Dr. Andrea Perlusz, Special Education Department and Hearing Impairment Department of Eötvös Lorand University referred to the UN Convention and said that Hungary is not in a good position despite the fact that Hungary was one of the first countries to join the convention.

 

Unfortunately there was not enough time to discuss the outcomes of the various workshops.

 

Gilles Cognat, President of the Board of EURO-CIU opened the General Assembly Meeting.

Following the agenda all topics were covered by the members of the board and there was nothing strikingly new.

Gilles Cognat and Hendrik Fehr – as we already knew – will not candidate for their positions next year any more. This means elections will be necessary.

Jean and Anne Marie Welters announced that they cannot host the EURO-CIU in their home in Luxembourg any longer; the association has become too big. This means the office needs to be registered in a different place, preferentially with a bigger association. It is not clear yet where.

 

ERASMUS Plus sounds like a very good opportunity to apply for funds to implement a defined project. Until 2020 there are plenty of funds for networks, campus etc. One requirement is that minimum 5 European countries take part in a project.

It is desirable to invite somebody from the European Community to present which funding opportunities are available for the next Annual Meeting of the EURO-CIU April 8 – 10, 2015.

This meeting will take place in Antwerp, organized by Leo de Raewe.

It still needs to be decided whether there will be a “Manufacturers’ Workshop” possibly before or after the meeting in Antwerp in Brussels. Patrick d’Haese from Med-El already confirmed participation. Other CI manufacturers reacted either negatively or reluctantly.

It also needs to be decided in which way the publication of the “Quality of Life” Study, implemented by the Ear Foundation will be published and when.

For the Annual Meeting of EURO-CIU and workshops / symposium two countries volunteered as hosts: Italy and Finland.

The decision was Italy/Varese for 2016 and Finland/Tallinn for 2017.

 

Lorna Lord reported about the very successful International Friendship Week in the UK.

There were 27 participants from UK, New Zealand, Spain, Germany, Norway, Finland.

The ratio between Children and leaders was 2:1.

 

The representative of the new member country Bosnia Hercegovina presented briefly about the organization EHO. They have 30 members; the 2st CI surgery was performed in this country in 2001.

There is no legal framework for dealing with replacement of speech processors, spare parts, repairs etc.  There are no adult CI-recipients in BH. They try to introduce Neonatal Hearing Screening and get support from Turkey.

The representative from Denmark spoke about the organization Horeforeningen.

They have 8.000 members with all kinds of hearing impairment, 1200 adult CI-recipients and 1200 childen with CI. There are 3 clinics in Denmark performing CI surgeries and they offer three brands, some of them only two. They have a presence in Facebook and arrange various events.

The representative of Finland presented the organization LapCI.

Leena Hasselmann reported that this was founded in 1999, they have 140 member families and 160 children with CI. They are funded by the revenues of the slot machines with 100.000 EURO every year. The organization has basically two employees. Minna Mäkela is the new president.

They have various activities, e.g.:

CIsu-paja – empowerment programme

Kuuloavain – Key to Learning

Vinkkipuhe – cued speech training

Monthly Club Meetings, they bought 5 cameras for children to prepare for a presentation in an exhibition “The Sound that I Like”.

Leena Hasselmann agreed to present about their activities to interested parents from other countries via Skype in the second half of May / early June.

 

A survey, initiated by the Slovakian member organization, was sent around and only 2 countries are still missing. Difficulties were encountered in collecting the information and in publishing it.

They asked for help.

Monika Lehnhardt offered to provide a platform in the Internet – a WEBLOG – as already suggested during the meeting in Tallinn in 2012. This is an initiative of the Lehnhardt-Stiftung.

 

The other initiative of the Lehnhardt-Stiftung is the Appeal to donate used and not needed speech processors for children with CI in countries like Armenia and the Ukraine.

Posters and leaflets will be sent to some of the EURO-CIU member organizations, i.e. those where speech processors are replaced on a regular basis paid by the insurance companies or governmental bodies.

 

Brian Archbold informed us that the Newsletter was read by 2500 people and that Med-El forwarded it to 500 addressees.

 

Finally the three CI manufacturers reported about new products and recent developments.

Natalia Pisareva for ABC “Patient first” focused on Naida CI Q70

Antonio Sportelli for Cochlear “connecting people to the world of sound” spoke about 250.000 users of Cochlear’s products worldwide and presented the product range of CI, BAHA, Acoustic Implants.

It took 4 years to introduce Freedom (2006) after the introduction of ESPrit and 3G in 2002.

It took 5 years then to introduce Nucleus 5 in 2011 and only another 2 years to introduce Nucleus 6 in 2013.

Angelika Heinze for Med-El “The Hearing Company” spoke about Triformance = triple performance.

This consists of: Fine hearing, fine structure of sound preservation and complete cochlea coverage.

 

In Antwerp next year EURO-CIU will celebrate 20 years !!!!!

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