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One year of bilateral hearing with an AB cochlear implant

As experienced by Stuart McNaughton

 

In March 2001, my life changed. At the age of nineteen, after being discriminated against in the workplace for no longer being able to do what I was originally employed to do as a result of my rapidly deteriorating hearing, I sought a solution. I was desperate. I had become a recluse, my family my only friends, the only people I could turn to. They were the ones I relied upon to organise my appointments, even to order my food on my behalf in restaurants for fear of getting it all wrong and misunderstanding a waiter’s questions. That is how introverted I had become.

 

After two years on the waiting list, I was finally implanted in February 2001. I had chosen AB because, at that time, AB had conducted studies on how their device at the time was delivering exceptional discrimination, especially in terms of music. By the time of my implantation, I had been enjoying music mainly by vibration: for most of my teenage years, I would seek the lyrics of songs and, with a hand on the speaker of a music player, I would somehow match the frequencies of speech with lines of lyrics that I had on paper. I just yearned to hear something because I simply had nothing to lose.

 

As the date of my surgery neared, my parents were clearly worried. I wrote about this in my diary at the time, which was reproduced to form a large, emotional part of my book, He Is Not Me. At the time, I wrote:

 

“For them [my parents], I was the way I had always been and, bit by bit,

they had made their peace with the fact that my hearing situation was

getting worse. It was almost as if their acceptance of it piece by piece

was being counteracted by my growing non-acceptance of it, my

unwillingness to continue that way.”

 

Anyone who knows me well knows that I am stubborn and impatient, and I recall the afternoon of my admission into hospital. I had written:

 

“That afternoon was pretty symbolic for me because, as my parents prepared

to leave me at the hospital , I was putting not just my ears, but my entire

life into the hands of the doctors, consultants, specialists and nurses.

I removed my hearing aids and handed them to my mother. I was mentally

preparing for a new me and, holding my mother’s hands, I told her that

I can’t hang onto the old me. I don’t think she quite understood the

symbolism in what I was saying, but she took the hearing aids with her

anyway. It was my strategy, in order to take to the cochlear implant as

quickly as possible, I was going to deny myself the very limited access to

amplified hearing I had left.”

 

When my device was activated in March 2001, my world was transformed. Within six weeks, I was enjoying music on a scale never experienced before, and I made my first telephone call to very tearful parents who were on holiday in Spain at the time! At the age of twenty-three, I had made a telephone call! Within six months, my implantation gave me the confidence to move abroad. I spent many years abroad, learning a foreign language, embarking on – and completing – my Master’s degree. It goes without saying that my implant didn’t just improve MY quality of life. It also improved the lives of those around me.

 

As the years passed, I started to worry. How long could this minute electrode which now resided in the cochlear nerve in my left ear survive for? I had worked hard to complete my education and to develop a career, which is very dependent on hearing. My dependence on lip-reading diminished significantly and now I was left with a dilemma: should I have the second ear implanted?

 

I always believed that I had very good hearing with my cochlear implant. True to my plan, I never used my hearing aid in my right ear. To this day, I’m convinced that this is why my hearing test scores continued to improve over the years.

 

After ten years as an AB recipient, I decided that I wanted to hear in two ears. The reasons for this were manifold. The obvious reason was that I couldn’t always tell where noises were actually coming from. Second of all, hearing people have two ears, so why couldn’t I? Thirdly, there had been two incidents where I had been nearly hit my passing traffic coming from the direction of my un-implanted ear – this was now a matter of safety. Lastly, but perhaps equally – if not more important – was the fact that I had built up a career that I was proud of, and wishing to preserve. The only way to secure my career was to have a back-up, to hear in both ears just like hearing people can and do.

 

I started the process for a second implant by contacting my Cochlear Implant Centre. At first, my request was denied. This is when the stubborn and impatient parts of me came into play. I presented my fears of safety, my concerns for securing my career of choice, and even provided an analysis of the extra taxes I had paid during the ten years as a result of my cochlear implant having enabled me to develop as a person, to exploit more opportunities which, fairly or unfairly, meant that governments coffers made more money from me as a taxpayer. To be fair, I had paid for the second implant. After two years of pushing, arguing, detailing, persuading and justification, suddenly the funding was approved.

 

In April 2013, I was implanted for the second time. On May 28, 2013, I was activated. You can see the Activation here. Within minutes, I felt ‘whole’, as if the coming together of two ‘sides’ had been performed. I rushed home, and listened to some Shostakovich, and just cried. Over the next few weeks, I was constantly wowed. While on the phone one day and walking through the park, I could hear children in my left ear and dogs barking in my right. I couldn’t just hear them, but two weeks after activation, I could discern between the two. My world was the same as a hearing person’s world. Another notable moment was when I was meeting with a colleague in a public café and, outside, a police vehicle with sirens aloud, passed us. I heard the sound of the siren go from one ear to the other, as if my brain was tracking sound in a way I had never been able to do before.

 

And there was me thinking, for more than a decade,

that I was hearing perfectly [with just the one ear].

 

As I write this, I’m celebrating one year of hearing with two years. I finished writing this article yesterday, on May 27,, 2013. And a lot has happened in the last year. Hearing aside, this has been one of the most emotionally tormenting years of my life, but the stubborn person within me doesn’t want to dwell. The impatient person in me wants to smile, to live life, because that’s exactly what my cochlear implant enables me to do. Things don’t look good, and I put on some music. Before you know, the old, playful Stuart is back!

 

On one level, and in the early months that followed the activation of my second implant, I regretted having the implantation. You see, as a bald man, wearing two headpieces and two processors, people stared. If they thought that one headpiece and processor was a Bluetooth device perhaps for receiving telephone calls, now they were wondering: what is that? They didn’t only stare, but when they thought I wasn’t looking, they were taking photos with their smartphones, or other gadgets. In the beginning, I felt these strangers, too afraid to simply ask what the devices were, were scrutinising me. Those that know me for the extrovert person I have now become would probably think I would welcome this kind of attention, but when the focus is on the one thing that you perceive isn’t perfect with you, it’s difficult to turn that into a positive.

 

With all the additional benefits, however, especially with the release of the Naida CI, the Phonak ComPilot accessory, and the many features built into the Naida CI, I’m sorry, but I don’t have time to cower anymore, to apologise for being different. It’s taken my determination to raise awareness of cochlear implants to a whole new level. Every day, I wake up, and my world is transform with the wearing of my AB cochlear implants. Each night, I retreat back into the silent world.

 

Reflecting on one year of hearing with two ears, I can confirm this much:

 

• I can now hear the phone with both ears.

• When listening to music, I can hear exactly where each instrument was in the recording studio.

• I don’t worry as much as I used to – I now have my back up.

Recently, I purchased ten albums online and spent a weekend listening to them, shortlisting my favourite songs – these are now a playlist I listen to nearly every day, especially when I’m on the move. When I’m travelling on the London Underground, listening to my music, I see others listening to their music too. I look at them, and for the first time I can now do what they do. As the years pass, and the technology continues to progress, it appears that those who perform well with cochlear implants will hear better, especially in noise, than the hearing people do.

 

Personally, I thought that until very recently my right ear was still ‘waking up’. Yesterday, I went to my Centre, and had my One Year Review. We did some in-noise Sentence tests (BKB) and the results are as below:

 

Binaural hearing at 10dB SNR – 98% correct*

Binaural hearing at 5dB SNR – 90% correct*

Left (first implant) ear only at 10 dB SNR – 91%*

 

And this is the astonishing statistic. Remember how I told you that I had given my hearing aids to my parents on the day of my initial implantation in 2001? So, from February 2001 until my sequential activation on 28th May, 2013, I had no audiological stimulation of any kind with any hearing instrument.

 

When I was told that I had scored 92% with the right ear (sequential implant) at 10dB SNR, I was in disbelief. In just one year, and with such a long period of no audiological stimulation, the performance of my hearing is equal regardless of the ear. Of course, the electrode in my new ear is more advanced than that placed on my left ear back in 2001.

 

Statistics aside, and dismissing speculation, the truth is that hearing with two ears does add value, and so I will continue to share my stories, my wow moments and look forward to meeting many more recipients who are incredibly privileged to be part of a much larger, more dynamic and beautiful world as a result of cochlear implants.

 

Stuart McNaughton, May 27, 2014

 

* The decibel (dB) is the unit used to measure the intensity of a sound, while Signal-to-Noise ratio (SNR) is a measure that compares the level of a desired signal (meaningful) to the level of background noise (unwanted signal). For BKB Speech Perception testing, sentences are presented in a quiet environment and then in the presence of background noise of different levels or signal to noise ratios (eg. +10 SNR, +5 SNR, 0 SNR, −5 SNR, −10 SNR). It will be easier to follow the sentences in +10dB SNR (signal is louder than the noise) than compared to -10dB SNR (noise is louder than the signal). 0dB SNR means the signal and noise are presented at equal levels. A speech perception score of 90% at 10dB SNR means the person scored 90% when the sentence signal was presented 10dB louder than the background noise.

 

Stuart McNaughton is the author of He Is Not Me, a compelling and moving account of life as a profoundly deaf child and hearing adult. He Is Not Me explores themes such as childhood bullying, discrimination in the workplace and the conflict between the deaf and hearing worlds. For more information about Stuart’s journey and cochlear implants, please visit www.HeIsNotMe.com

 

Stuart McNaughton is currently employed by Advanced Bionics as Manager of the Bionic Ear Association (BEA), a platform aimed at supporting cochlear implant candidates through their journey to hearing.

 

A review of the Danish version of He Is Not Me, ”Han er ikke mig”.

Written but Aida Regel Poulsen,

Hearing Consultant at the South Danish Centre for Hearing Loss.

"Han er ikke mig" is a moving story about Stuart’s own childhood and experiences with a hearing loss acquired as a small boy and his struggle to become an active part of the life he lives.

In the book, you get an insight into the parents’ struggle to keep Stuart in the mainstream system after which you find yourself sitting with tears in your eyes over the loneliness in which Stuart has often found himself – not to mention as an obvious victim to bullying in the English school system.

Bullying also takes place in one of Stuart’s first work places.

 

In addition, Stuart meets no other children with hearing loss during the first many years of his childhood. Through the entire book, you clearly sense Stuart’s great effort and struggle to obtain an acceptable balance between what others think of him and must decide on his behalf regarding the choices he has to make, and his personal rights and possibilities to make up his own mind.

 

Repeatedly, the considerations on learning sign language and becoming part of the deaf society arise. However, this group is described as and appears to be a group, which cuts itself off from the English society.

 

The great considerations, as a young man, on letting himself be operated on and receive a CI – there was nothing to lose! Then the great asset, which the CI becomes, in order for Stuart to take part in social correlations with good friends, colleagues, and not least family.

In the book, you clearly feel the freedom, which the CI provides, enabling Stuart to travel throughout the world and work in other places than England – and letting him build up his career.

In addition, Stuart tells of his ongoing experiences with sound and that he wants a second CI.

 

With Stuart’s choice to letting himself have a CI operation, part of the English deaf society turns its back on him. Absolutely a story worth reading.

 

Furthermore, the book is quickly read – partly because it is impossible to put it down once you have started on it, but Ann Woodall’s Danish translation also provides it with a light flow.

 

A couple of remarks to some of the information in the book, which is now available in Danish, must be that the accounts of deaf schools in England describe a considerably different special school for students with hearing loss than the ones we know in Denmark.

 

Danish special schools for students with hearing loss do not uncritically use sign language without working on developing the students’ auditive skills, following up on audiologic treatments and the use of technical communication devices when teaching.

 

In Danish special schools for students with hearing loss, the students may enter the exam at level with the same academic curriculum as applied in the local schools. This very year - 2014 – we, at the Centre for Hearing Loss, celebrate our 20th anniversary for taking the students to the exams at an age appropriate level. This is not possible in English special schools.

 

The description of how deaf persons look down on those who chose to have a CI operation is one we know in Denmark from way back, and that is a conflict which is considerably prevalent in a number of other European countries, amongst them England, but also Austria, Belgium, Germany, and France can tell about this kind of disputes.

 

In the Scandinavian countries, the balance is more evened out, but it is undoubtedly a balance, which we must eternally work on. The group of children and adults with hearing loss is a considerably varied group, which is why the need for communicative strategies in accordance with audiological treatment and other technical solutions to different listening situations varies greatly.

 

However, one thing is common for everybody, namely the personal struggle to become an equal part of a society with respect for one’s own conditions – to find your own exact standpoint.

It is this struggle in particular, on which Stuart sets focus.

 

For more information, see http://heisnotme.com/download/dk.html

_____________________________________________________________________________

 

Aida (herself hearing impaired), originally a trained schoolteacher, is a hearing consultant at the South Danish Centre for Hearing Loss, which is situated in the town of Fredericia in Jutland. She consults Danish schools on the inclusion of students with hearing loss and covers 40% of Denmark. She has visited the Ear Foundation a couple of years ago and does quite a lot of Scandinavian and International work within that field. Hence, her approach is solely pedagogical and not clinical, but she cooperates with the clinical system.

 

Come on feel the noise

Article in The Guardian / Observer (UK), published on March 16, 2014.

Link to online article here

 

Why I think Everyone should have two cochlear implants

As presented by Stuart McNaughton, AB recipient and author of ‘He Is Not Me’, at the National Cochlear Implant Users Association AGM, in the UK.

"It’s always good to share your hearing experiences with others because, only by sharing our experiences, can we begin to make various stakeholder groups aware of just how life changing cochlear implant technology actually is. We now need to move away from old fashioned forms of testing which are relied upon to establish whether or not an individual is eligible for a cochlear implant. We should take into account the improvement in the quality of life of people with cochlear implants for they – like myself – know what a cochlear implant has done for them and myself.

I was diagnosed as profoundly deaf when I was four, was fitted with hearing aids and educated in mainstream schools. That in itself is quite challenging when you are the only deaf child in an inner city school of more than five hundred pupils. As such, I was frequently bullied. Socially, I felt inadequate almost on a daily basis. I was heavily dependent on my family, on relatives and relied upon lip-reading in order to communicate with others. Needless to say, my social circle was very small. As a deaf child, or as a young deaf adult, you tend to surround yourself with people you feel a true connection with, rather than casual acquaintances.

I left school at sixteen and went on to hold a number of temporary roles. When I was nineteen, I was actually discriminated against in the workplace. When I was twenty-three, I was implanted. Six weeks later, I made my first telephone call! Today, I have friends all over the place. As we all know, human mobility is higher than ever these days. So much so that it is quite common to have friends who reside in different countries. Fortunately, because of the phone and technology such as Skype, it is possible to keep in contact with these friends.

I feel a lot safer, because I have an awareness of sound and, indeed, of what’s going on in the here and now. I know if there is road traffic around me, and where it is coming from. Relationships in general are much richer because the relationship is not based on my dependence on the other people any more. It is more of a mutual, equal friendship. This equality is so acute that I am now able to give something back. In fact, I actually volunteer for Deafblind UK, and I look after an elderly woman on a regular basis who suffers from hearing and sight loss.

Career-wise, I moved abroad just six months after implantation, I then went on to do a Masters degree. I made new friends, my communication skills improved and I actually ‘network’ now. I learnt a foreign language and am now a lecturer at one of the top Universities in London. That is in addition to the work I also do for Advanced Bionics, the company that changed my life.

Often I get asked why I chose to go bilateral thirteen years after the first implant. There were many reasons, but it all started with the realisation of how much I actually love my life. It is like wanting anything that you know will help to maintain that quality of life with confidence rather than just ‘getting by’. My current career is also heavily dependent on being able to hear.

At the end of the day, a cochlear implant is an electronic device and, in my opinion, will not last a lifetime. But it is no use waiting for stem cell and hair regeneration advancement. It is not going to happen in our lifetime. In the meantime, progress is being made with cochlear implants. Whether we are talking about advancement in voice processing strategies, sound processing strategies, or miniaturisation of the processors, everybody in the industry is working towards some improvement. Some of those significant improvements have even already arrived so, for me, it was the right time to go bilateral.

To emphasise this last point, the electrode that was launched a few months ago by Advanced Bionics is actually an atraumatic electrode in the sense that it preserves whatever hearing is there and can potentially allow for re implantation. When the implant was activated, I was amazed, because I was able to detect speech immediately with the new ear on its own. When we put the old one back on as well, I was literally overwhelmed! Within hours, hearing with just one ear felt wrong and I never expected that. You can see a video of my sequential activation http.

Another question I am often asked relates to how I managed to get funding for a sequential implant. It took quite a long time, but I thought about my ambitions, my plans for the future, and I wanted a backup implant in case the first one broke down. When we look at outcomes, we should consider the progress that each individual makes, and that is not only social, it is not only from what hearing tests tell us. I actually provided a detailed analysis of how much my salary had increased. Don't get me wrong, I'm not a millionaire by any means, but the sequential cochlear implant had been paid for, especially with the amount of tax I have had to pay in the last thirteen years since the first implant!

I sent a copy of my letter about my reasons for wanting a second implant to my GP and to the Primary Care Trust after waiting a long time to get results through the conventional routes. Then, everything started to change. I had an appointment with the Consultant and, in April, I was implanted! We don't know to this day whether or not that letter had any impact, but the truth of the matter is under the current guidelines I do NOT qualify for a sequential implant on the NHS. I regard myself to be one of the lucky ones.

So, now I am hearing in stereo and I want to share with you a few experiences. One day I was on the telephone to my parents while walking through a local park. I could hear children in one ear, and dogs in the other ear. Now, that is a bizarre feeling for somebody who has never had hearing in both ears before. I could also identify the sources of sound without looking.

Another experience involves my love of music. On the first day of my activation, I rushed straight home and put some headphones on. I listened to a Piano Concerto by Shostakovich, a piece of music I had come to enjoy recently with just one ear. In the first few minutes, it was strings and violins and then the piano made its graceful entrance. I could hear the strings in one ear and the piano in the other. With pop music, it was the same thing. The drums would start in one ear, a bit of bass in the other, and so on. A musician that I know, explained this to me. The reason why I heard different things in different ears is because that is how it was recorded in the studio.

Another thing happened when I was teaching at University one day. Through the windows in the main atrium, I not only saw the flashing lights on top of a police car, but I also heard the siren. The car actually disappeared into the traffic, but I could hear the siren going from my right ear all the way to my left ear, even though I couldn't see the movement that had taken place. I had followed the moving sound source with my ears – powerful stuff!

So the conclusion that I came to were that the NICE guidelines were just that - guidelines. Don't be afraid to question them. We go on and on about equality, but there is no equality in the NICE guidelines. Most people have one implant but should it fail the long term costs will be higher because you will need to be re admitted, re-assessed, re-implanted, and rehabilitated. My advice to those who seek a second implant is this: persevere.

We are meant to have two ears. I actually felt so strongly about my journey to the hearing world, that I decided to write a book about it. Please take a moment to visit the He Is Not Me website on www.HeIsNotMe.com. If you would like to also receive regular information about life with hearing loss, you can ‘like’ the He Is Not Me Facebook page on www.Facebook.com/hesnotmebook

 

Stuart's audiograms after 1 month

The moment Stuart's second implant was activated

'Keep Calm' series relating to the journey to hearing

Article featured in Euro-CIU's Quarterly Newsletter,

May 2013 edition.

Article in the Spring 2013 edition of 'Quiet',

the official Journal of the British Tinnitus Association

Banner promoting forthcoming activation of

second cochlear implant.

Published in Spring 2013 issue of Open Hand,

the magazine for DeafBlind UK

Published in May 2013 issue of University Business

Published in the April 2013 issue of AudioBuzz,

newsletter of the South African Association of Audiologists

Post-op X-ray, one week after implantation

(taken April 25, 2013)

Published in The Indepenent (April 2013)

(link to online article here)

Extract from Inside Sonova (March 2013)

Article written for 'The QH', magazine for Students at

the University of Westminster (February 18, 2013).

Web banners for use by third parties

Original press release upon launch of He Is Not Me

January 31st, 2013.

Book Cover (first edition), January 31st, 2013

Copyright © 2014 - Stuart McNaughton