Bilateral implants

I’m enjoying being able to hear with my implant but as my hearing has improved, my perception of sound has shifted in my unimplanted ear. The hearing aid makes life sound truly awful now – if I can hear anything at all. The difference between my two ears is stark.

Last Thursday I wore my hearing aid all afternoon. [Do I get 5 stars?] The earmould burned my ear for 30 minutes but I kept it in. I wanted to explore the difference between the cochlear implant and hearing aid. Wearing them together in my silent office, nearby sounds suddenly seemed too loud, low and harsher. Putting my mug on my desk sounded like a crash. Ugh.

This is my first ‘hearing’ autumn, and it’s BEAUTIFUL! I took my dog to the park for a walk. With my implant, I was able to hear the autumn leaves crunch crisply and beautifully beneath my feet, the trees rustling in the wind, the traffic driving past the park, people talking and laughing as they walked past me, aeroplanes flying overhead, my footsteps on the path and other footsteps approaching and receding, my dog panting, the clicking of his nails, his ball *thunking* on the ground, the soft swish of grass under my feet, the birds sweetly tweeting.

I flipped the implant off and switched my hearing aid on.

Flashback to seven months ago.

All I could hear was the faint sound of my own footsteps. Around me was silence.

I felt so disconnected. So alone.

On the outside, looking in.

Just like I used to.

I put my implant back on and the rainbow came back. Some days I really do feel as if I have half a head of hearing. I feel as if I have an abyss on my right side. There’s nothing there to hear. Sometimes it feels as if I’m not really present. Disconnected. Unreal. So I’m thinking of getting a second implant. In the UK, this means paying for it myself, either here or abroad. Sooooo …. what’s it gonna be? An implant or a house deposit? An implant or a Porky? I’ve not yet met a bilateral user – I only know of two in the UK. Meeting a unilateral user was my tipping point a few months ago. I’m wondering what’s going to be my tipping point this time. Too much furniture? My crap driving?

The next NICE review will be in February 2011. I’m hoping they will approve bilateral cochlear implants for adults in the UK, but I’m not holding my breath. A second cochlear implant gives the user localisation of sounds, improved listening performance, and improved listening against background noise. Advanced Bionics are offering a webinar on bilateral cochlear implants tonight.

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Advanced Bionics press release –

It’s no surprise that two ears hear better than one. Just as we are born to hear with two ears, using cochlear implants in both ears (bilateral cochlear implants) gives you or your child the best opportunity to hear more naturally. Whether you are considering implants for the first time or have used one implant for years, today’s cochlear implant candidates and recipients experience many benefits of hearing with two ears. Find out if you or your child may be a candidate for bilateral cochlear implants. Hear first hand accounts from those who know best, cochlear implant recipients and their families.

REGISTRATION AFTER THE JUMP

Online. Oct 19, 2010. 6pm Pacific/Los Angeles (9pm EST/New York, 2am GMT/London)

Contact: hear@advancedbionics.com

Captioning will be available.

Assimilation: Two months

It has been 2 months since activation. What can I hear now?

Animals seem to have taken over my world. I have a large leafy garden and can hear birds all day long, not just blackbirds, but magpies, starlings, a lovely orchestra of TWEET TWEET, TRIILLLLL, CHIRP CHIRP, PING PING, COO COO, PEEP PEEP. I love sitting outside listening to them. At the moment I am hearing around ten different types of bird calls. One night I cracked up laughing. I could hear 3 birds singing to each other, they sounded like a phone ringing, knocking at the door and the doorbell. When night falls, all the birds fall silent. Then the dog next door starts barking and carries on for an hour. Then my own dog starts barking in his sleep. I have also heard our cat miaow. I haven’t heard our foxes yet and we have plenty!

Lower frequency sounds have started to come back. I can hear the rumble of traffic and the bus engine. Sounds I am enjoying listening to are male voices. Those sexy, rumbling, low, growly voices. I’m fascinated by how different they are from female voices. Who woulda thought a voice could be so attractive?

I have been able to hear a teeny bit on the phone. No special equipment required! I use my implant as normal, on 100% T-mic microphone, pick up my mobile phone, and put it to my ear as any hearing person would. The T-mic mimics the hearing ear as it is positioned at the ear canal, aiding directional listening by collecting sound in a more natural fashion than a hearing aid or other brand of cochlear implant. I do need lots more practice in discriminating words before I can use the phone easily. Considering I have been deaf all my life and have never used the phone, this blows my mind. I love hearing voices as it is like the captions have been shoved straight into my brain, the understanding is just there. It seems so effortless when it happens.

I have been able to hear speech in other situations too. Last weekend, I was the 2nd photographer at a wedding, working with Amanda, the 1st photographer.

Michelle and Lee, the newly-wed couple, were standing in an archway. Amanda was taking photos from the inside of the building whilst I was taking photos from the outside.

Michelle and Lee were kissing for this shot and they kept kissing. The kisses became slower and longer. More lingering. I didn’t really know where to look. I started thinking “Hey guys, maybe time to get a room?”

Then out of nowhere, I clearly heard Amanda shouting “Again! Again! Again!”

“….. Slower!”

Situation heard and understood!

The street is incredibly noisy. I use Advanced Bionic’s ClearVoice to reduce sounds in noisy environments such as the street, train station, on the train. It’s fantastic, and I can pick out voices around me as unwanted background sounds drop away. I tested ClearVoice in a wine bar, and was able to lipread and listen to other cochlear implant users with ease. I heard one lady who came up to my dog and said “Hello darling”. I actually heard her say this behind my back! (I had to double check with her to make sure I had heard her right – I don’t trust my new hearing yet.) I noticed that the hearing aid users were unable to participate easily, they looked stressed and were often left out of the general conversation. This was how I was 3 months ago and I felt sad for those people. The cochlear implant users really had to make the extra effort to include the hearing aid users in the conversation. We totally understood, for we had all been there.

At work, with my office door shut, I have been able to detect my colleagues Calum talking in his soft Scottish brogue in the office next door and Karen coughing as she walks down the corridor, the photocopier room door squeaking next door, the photocopier spewing out paper, people’s footsteps as they walk past my office, people talking outside the building. I was able to pick out clear (albeit echoey) voices in the kitchen as we gathered together to celebrate Robert’s birthday – it is no longer a wall of horrendous mushy sound. I am still loving the sound of the clock ticking on my office wall.

Today I tried my hearing aid in my other ear for the first time in 2 months. An aeroplane flew overhead and I could clearly hear it approaching with my cochlear implant. To my shock, it didn’t even register with my hearing aid. My own voice sounds deeper and much quieter with my hearing aid, and I can only hear bits of it. I put the television on and set it at a volume that was nice and loud for my cochlear implant. However, I could not hear it at all with my hearing aid. The quality of the sound is different between the two hearing devices – higher pitched with the implant, deeper with the hearing aid. I am horrified at the difference and at how much sound is missing with the hearing aid – which I used to wear in my better ear.

How much I have missed the sounds of life – without even realising it. I have a lot of catching up to do!

Platform 9 3/4

It’s been one week since switch-on and what a start it’s been to my journey to better hearing. It’s been nothing like I dreamed it would be, with unexpected twists and turns, and I’m sure, many more to come.

I was delighted when the beeping faded and real voices started to come through. I had been pumping the volume higher and higher and finally requested an early tune-up from my audie last Friday. Now I was able to hear the keys being depressed on my Blackberry (not the tone sounds, but the actual key depressions themselves), cutlery on plates, and traffic just as it whizzed past me. I was happy with the increased volume but as I left work on Friday evening, I stepped out of the building and this loud whine started up in my head. EEEEEEEEEEEEEEEEEE. It didn’t go away. EEEEEEEEEEEEEEEEEEEEE. I couldn’t hear anything else, just this loud EEEEEEEEEEEEEEEEEE. What was it? Was there something wrong with the cochlear implant? EEEEEEEEEEEE. Or my brain? EEEEEEEEEEEEEEEE. I ripped the implant off after 30 minutes as I couldn’t stand another minute of EEEEEEEEEEEEEEEEEEE. It just did my head in.

*shudders*

The next day, I turned the volume down quite low and this was a relief, as I was busy taking photos all day in Covent Garden, it was very busy with lots of people around, making for lots of background noise. I didn’t want to take the cochlear implant off as in order to maximise success, particularly in the learning stages, the user should wear the processor for every waking hour possible. This is not a ‘Nazi’ view (as one ignoramus has accused me of having) but a strategy recommended by cochlear implant centres. A cochlear implant is not like a hearing aid at all. It’s a completely different animal. The more you wear it, the more your brain becomes accustomed to sounds, the more synapses your brain will create, the more sounds your brain will recognise, and the better your hearing will become. It’s like training to be an athlete – an hour here or there when you feel like it will not help you to become a world-class athlete, but regular and consistent training will.

On Sunday, I turned the processor up again. I was thrilled to hear my dog ‘talk’. He talks a lot! Erasing my notes, I was shocked to hear the eraser scrape across the paper. It moves ….. ergo it makes a sound. I heard a racket and discovered this to be pigeons and doves in my chimney. I heard the door unlock and the light switch click, in the bathroom next door. I could even hear myself breathing. Stunned was probably how I felt that day.

It was Monday morning and I slapped the processor on my head. EEEEEEEEEEEEEEEEEEEEEEEEE. I couldn’t hear anything else, EEEEEEEEEEEEEEEEEEEEE, couldn’t stand this for another second, EEEE – took it off, and hightailed it to the hospital. The processor was checked and the impedances were fine. I was given a new mapping and the whine was still there, quietly in the background, so the audie turned the high frequencies down to 5% and switched my HighRes Fidelity 120 from HighRes-P to HighRes-S which has softer high frequencies. She reckons that I have pushed too far, too fast, and my brain is protesting at all the new high frequencies I haven’t heard before. This new programme seemed to work. I got a shock to hear a colleague preparing her lunch, she was using a knife to jab holes in the plastic wrapping of her microwave lunch, it sounded like loud gunshots. I picked up the sounds of my dog sighing (like, every 10 minutes!), my footsteps on carpet, and the beeping of the supermarket till in an otherwise silent supermarket.

My tinnitus decided to make a comeback in my unaided ear and gave me this lovely loud drilling sound for the next three days. I haven’t been wearing my hearing aid as I want to give the cochlear implant 100% and get this up to a high standard before giving my brain mixed signals to cope with. Sounds from hearing aids and cochlear implants are very different; the brain does acclimatise to cochlear implant sound but some people’s brains do not like mixing the two. This is something I may try when I am ready, perhaps in six months time. In the meantime, my brain does not like having no stimulation in the unaided ear, and is giving me merry hell with tinnitus. It has, however, been quiet for the last two days – until I start my Clix soundwork. Fickle brain! Clix listening activities are available from The Listening Room, where you can practise listening skills on your own or with a coach, and record your progress.

Over the last couple of days I have been able to pick up new sounds from downstairs – voices and rapping on the TV. I’ve also been able to hear footsteps coming up the stairs and a bottle cap being unscrewed from the bottle. AGC (Automatic Gain Control) is another thing I’ve noticed. This is a process whereby the hearing aid or cochlear implant automatically reduces all sound for a few seconds when a loud noise is heard. So when I call Smudge, my world goes silent for two seconds. It’s a very odd experience.

I listen to a chapter of my audio book every day, Harry Potter and the Philosopher’s Stone, read by Stephen Fry. This book was recommended to me as Stephen Fry has a very friendly, clear voice which is easy to listen to. At first his voice sounded like a whine with gaps for the spaces between words, which was very very tiresome to listen to. Now it sounds clearer, I can tell there are words in an English accent, however I am still unable to understand what is said. Today I was able to pick up on when Stephen uses different voices for the characters, and on the emotion in each voice, which makes the story come alive. Voices still sound tinny and not quite normal, but I expect this to change soon. ESL-Lab will help as this website provides lots of different voices to practise listening to.

It’s truly amazing to reflect on how much has changed in the space of one week. From nothingness, to hearing all of this.

My ticket looks promising. I had better run and catch the train to Hogwarts – has it left without me? Wait up!

Dancing into a new life

It’s been four days since switch-on and my bionic hearing is changing quickly. On Wednesday, I was able to detect a few sounds but they were all beeps. I started to pick out people beeping around me like little birds, items being banged set upon my desk, pages being turned in a series of beeps, the phone ringing in a beep. I had been given three levels of sound on my processor, which was expected to easily last me until my next visit to the audiologist’s, in five days time. On the second day, the volume of the beeps was getting quieter and quieter, and I kept increasing the sound. I started to detect my work colleagues’ voices, with an accompanying beep. I was able to detect a glass being filled with beepy water and draining down the sink’s plug hole, a kettle boiling in mini beeps and switching off with a ping, a crisp packet being beepily rustled. I was getting rather beeped off!

By Thursday evening, I didn’t have any more volume to add on my processor and I didn’t want to wait until Monday’s audiology appointment and miss out on any progress. So there I was on Friday morning, banging on my audie’s door, and she gave me a big increase in sound levels on the processor. She can’t believe how fast I am progressing and has told me to slow down, that my brain needs time to take it all in or I might hamper my progress. She thinks it is because I have done so well with my hearing aids that my brain is very well developed at listening so is able to make sense of the new cochlear implant sound more quickly. My audie said a lot of people take a month off after switch-on to relax at home and take in the new sounds, then they have a shock getting used to their usual routine when they go back to work. Considering I am facing a month of crappy sound whilst my brain adjusts, I reckon returning to work is the smartest thing to do. Just before I left the audie’s office, I realised she wasn’t beeping when she was talking to me.

*hurrah!*

It was Friday afternoon and I was back in the office. I was shocked to find that I could make out my colleagues voices without beeps over the top, their voices sounded distant, in high tones, but I could make them out. It was happy tears all round and a very emotional day. I was amazed that I was able to hear through a computer in my head.

I received a very kind gift from Patrice, Bob and Kirby – a pretty seashell for my New Ear Day, very appropriately reminiscent of a cochlea – and beautifully polished until it shone. I have spent the three days since activation working as normal and that means listening and taking in sound from clients all day, chatting to my interpreter, colleagues and friends, going to the usual noisy cafes for lunch. I think all this has really helped me to ‘acclimatise’ to listening through a computer. It was wonderful to hear a voice and not a beep, and it really helped with my lipreading – which I found a lot less stressful.

Voices now sound quite weird as my brain adjusts to the new sound, and I am having great difficulty understanding what is being said today. I expect to go backwards sometimes as I adjust but to carry on moving in the right direction. I can see that there are so many different shades of hearing. Moving from silence, to sensations or beeps, to detecting some environmental sounds, detecting voices and life around me, moving on to comprehending sounds and then – finally! – understanding speech. My Holy Grail is to understand speech without lipreading. A bonus gift would be to enjoy music. I’m on Advanced Bionic’s HiRes-S with Fidelity 120 program and will get an additional program in May 2010 called ClearVoice, which is revolutionary in having the ability to reduce background noise or the ‘cocktail party effect’. So now I have my goal in sight.

My sound database is now constantly being populated with a drip-feed of familiar, new and sometimes surprising sounds. Familiar sounds I can now hear are the dog barking next door, cars passing me, and sometimes footsteps. When I walk through a busy place such as the cafe in our office building, I don’t experience the usual wall of indecipherable echoey loud white TV noise that hurts my ears and makes me want to scream very loudly, but instead I detect the quiet chirping of people’s voices. (I know from Amanda, the cutlery will become my new sound from hell). At the moment my window of sound is still quite small, because I would not be able to cope if the audie let me have it all at once. It is a mountain that I have to climb slowly, take a rest now and again, acclimatise myself bit by bit. So at the moment, I am only able to hear high frequency sounds that are not too far away from me. I have tried listening to my iPod and music sounds absolutely rubbish, however the volume is set much lower (my hearing aid required the maximum iPod setting and hearing aid setting). I’ve bought my first audio book, Harry Potter’s first book, and find that very hard to listen to as the sound makes no sense – what I am hearing sounds like a long wail with gaps. But I’m holding the faith! Here’s why ….

New sounds from my cochlear implant are the Blackberry / Mac / remote control keys clicking, cutlery on plates, plastic bags rustling, scissors cutting plastic, clicking fingers, bus doors thumping shut, my dog panting and whining (he sure whines a lot!), using an eraser, the bathroom door lock and light clicking from the room next door, the doves and pigeons making a racket in my chimney, my own breathing and sniffing, zips, Amanda’s jaw cracking every time she opens her mouth – all these tell me that the cochlear implant is already outperforming my hearing aid. And it’s only been FOUR DAYS! I am realising that when something moves, it makes a sound. The first sound I could hear clearly, sounding normal and without any pesky beeping, was my shoes scraping on the tarmac when I walked my dog yesterday morning, and I took great pleasure scraping my shoes (and dancing) all around the park. Unfortunately, I now need a new pair of shoes.

I am amazed that I put up with such crappy hearing for so many years.

Bye bye, Crappy Hearing Aid.

Hello, ‘Borg with new shoes.

New, polished, and shining with pride. ~ Come dance with me!

Let’s be deaf for 5 minutes

Last week, someone asked me ‘What’s it like to be deaf’? I find this a very difficult question to answer. I said it’s like permanently having a very bad cold, and hearing constant noises in the ears after spending too much time in a noisy nightclub. It’s very difficult to explain to hearing people what it is like to live with imperfect hearing.

Caroline of Irish Deaf Kids brought this simulator to my attention. It’s a great tool for raising awareness of deafness, blindness, dyslexia and autism. I worked my way through the hearing impairment simulator. You’ll need Shockwave for the simulators to work, and don’t forget to switch on your computer loudspeakers.

The main problem hearing loss creates is an inability to cope with background noise. I can’t screen out unwanted sounds or filter voices so I can’t concentrate on one person speaking, I’m hearing all the background sounds as well. Check out this demonstration of background sounds – click on the clock, the pencil, the computer and the printer.

Demonstration : Annoying background sounds in the office

Who would believe that a deaf person can hear all these sounds? Yes, we can! Add on top of that, trying to listen to a person’s voice. So, a learning point here: always try to minimise background sounds – move to a quiet room. This is easy enough to manage in a working environment, but try doing this in a social context – when you’re out on a date and trying to listen to the other person ….. (can’t think of anywhere quiet, can you?!). I was surprised to learn that people with autism have this problem too.

Demonstration : Trying to listen to someone against background sound

I have a complete hearing loss in the high frequencies. This means I can hear the vowels in speech but I can’t understand speech, as I’m missing the consonants (high frequency sounds), therefore I need to lipread. Your voice sounds just like baby talk. This also means I can’t understand the TV or listen on the phone.

Demonstration : High frequency hearing loss

The next demonstration is of low frequency hearing loss. I also have a low frequency hearing loss, although I do have some residual hearing in the low frequencies. This demo has 4 buttons – I thought 2 of them weren’t working (high frequency, low frequency) as I couldn’t hear anything at all – a perfect demonstration!

Lipreading is really very tiring but it’s a necessary evil. There are many factors affecting my ability to lipread someone, and this is something that is often controllable by the deaf person. Being very tired will mean lipreading is much harder as I’m not alert enough to sustain the high level of concentration required.

Relying solely on my eyes means I have one channel of incoming information rather than two (eyes and ears). This makes learning and taking in information much more difficult and time-consuming. I find I learn much better at my own pace and with lots of printed material to take away with me. Obviously, that means I need more time to revise and reflect on this information. It’s also harder to remember material that is received in a visual way and not in an auditory way as well.

Demonstration : Taking in information in an educational setting

And remember, there’s always that pesky problem of distracting background sounds, and tinnitus which is like having a permanent headache, except you hear it. Mine is luckily fairly quiet so I can ignore it, but gets louder when I’m tired or stressed. Tinnitus is often one of the most upsetting side-effects of hearing loss as it can’t be cured, it can only be managed. I find the management tactics that help the most are being relaxed, having other noise in the background such as a very low TV, and concentrating on other things instead of worrying about the tinnitus.

Demonstration : Tinnitus
(thanks to the British Tinnitus Association)

I also have musical hallucinations and loudness recruitment where some sounds are too loud for me. This is because hearing aids amplify a range of sounds around the frequencies used in speech. In order to amplify speech, environmental sounds are made louder as well. So it’s actually quite a noisy old world out there!