Q&A: Sound after cochlear implant activation

6 01 2013

I got activated on Dec 26, 2012. First I was very excited to hear beeps, sounds being heard through the implant. After the audiologist was done programming, she started to speak to me. To my disappointment, it sounded like a ‘whisper’ and not even Mickey Mouse. Did you hear whisper like that or it never occurred to you?

– Zahid

Hello Zahid

Congratulations on your activation! There is a range of responses to activation, from hearing nothing to understanding speech right away. It all depends very much on each individual’s hearing history. The fact that you are hearing something right away is an great result and as you practise and listen daily, your ability to hear will improve and refine itself. It’s an evolving process which will take some time, longer for some than for others, but all cochlear implant recipients should do very well and achieve hearing similar to that of a normal-hearing person.

In my personal experience, I didn’t hear much at all at switch-on. Donald Duck then came to stay and he stayed for months. Eventually he left and everything sounded normal to me.

It helps to talk to others going through the same process. You can make contact with other cochlear implant users for support;

MED-EL – HearPeers

Cochlear – Cochlear Community

Advanced Bionics – Hearing Journey

There is an excellent website with all the information you need to know about making the most out of your cochlear implant at cochlearimplantHELP. Good luck and enjoy your journey to better hearing.


Sequential cochlear implant activation

17 09 2011

My second cochlear implant was activated this week. I was calm (and excited)  before activation, but once I walked into my audiologist’s office, I started to bite my lip in nervous anticipation. My expectations were low as I was born deaf, but my hopes were high. My second implant was done on my slightly better ear – my surgeon and audiologist viewed them as being very similar and they said it didn’t matter which ear I implanted first. I had always relied on my right (better) ear; my right ear had been able to detect and recognise loud sounds with the most powerful hearing aids whereas my left ear could barely detect them. Last year, I felt safer ‘giving up’ my left ear, just in case the cochlear implant didn’t work. Now that I have seen with my own eyes (and heard with my own ear!) that it does work, I was chafing at the bit to get going with my second implant.

Comfort levels indicator

The video starts with the set up session, where my audiologist Eilene set the stimulation limits – I heard a series of beeps in four groups of  frequencies, increasing in volume. I had to tell her when I felt the volume was comfortable, before moving onto the next.

The photo shows the comfort level indicator card, showing a range of comfort from ‘OFF’ at the bottom to ‘TOO LOUD’ at the top. I indicated where I thought each beep sounded to me. Ideally, this process sets a comfortable level of sound across the range of frequencies.

The volume is set at a very low level initially, to enable me to get used to sounds, and over the coming weeks this volume will be increased until I reach a volume level on a par with that of a hearing person. When I was happy with all the volume levels, Eilene switched the cochlear implant on.

Switch-on was such a huge shock, it was as if a tidal wave had washed over me, and I was totally disoriented for a few moments until I realised I was actually hearing Eilene speaking to me. Her voice was so incredibly loud that I almost fell out of my chair! Last year, with my first cochlear implant, I had heard nothing except a few beeps, as my brain didn’t know sound. This time, half of my brain has now been trained, and the cross-over of knowledge and exposure has helped the right side of my brain to respond to sounds. Progress is expected to be much quicker with the second implant.

On the video below, captions have to be manually activated. Click on the full screen option to read all subtitles – they don’t fit on the small screen.

I am able to hear voices although they sound like robots on helium. I am not understanding speech yet, just the odd word here and there. This is MUCH better than my first activation when I only heard beeps! I was tested on environmental sounds with software which showed pictures of pairs of sounds, from which I had to match the correct sound playing, and I scored 95%.

Eilene asked me to put the plug in her sink, fill it up with water, unplug, and listen to the water drain away. Last year, I couldn’t hear anything at all. This time, I heard all of it, high pitched, right down to the last bubbles gurgling down the pipe – I turned around and told her ‘It sounds beautiful’. She was absolutely thrilled as she remembers last year so well. I was told to wait until Thursday before increasing the volume, but I increased it after just one hour. I’ve been given a booklet of sounds to listen for and learn to recognise, and have ticked off many of these already.

I went to see my speech therapist Liz, and as expected, this was a very difficult session! I was given pairs of words to listen to, with similar consonants (e.g. pea/bee, pill/bill) – I got a lot of these right. It took me about three months to be able to do this with my first implant – I remember it was such hard, hard work! I was asked to listen to sets of sentences and choose the one she had said, and got all of these right, although I did not really understand the words as the quality of the sound was so unnatural.

I can listen to music that I am familiar with and follow some of the helium-inflated words, although not all the music is there, but I know the quality will only get better. It’s not enjoyable but I can recognise some of the melody.  Last year, it took me three months of daily listening to be able to hear music well enough to enjoy it. So I am already streets ahead with my second implant.

Listening with both cochlear implants on is just …. phenomenal. It blows me away. Voices sound richer, fuller, louder, whole, they sound natural and normal. How do I know what feels normal or natural, having been born deaf? I think my lifelong wearing of two hearing aids, even though they didn’t help much, has primed my brain enough to help with the effect of synergy. I never wore just one hearing aid on its own. I just absolutely hated wearing one hearing aid – I always had to wear two, to give me a sense of balance. Eilene thinks I have already synched the sounds from two ears. With both cochlear implants on, I don’t feel as if I’m wearing two separate hearing devices – I’m just there, in the ‘zone’, hearing, being, LIVING IN THE MOMENT!

I didn’t expect much from today but my second cochlear implant has just literally blown me away. I can’t wait to see what happens next.

To be, or not to be

26 06 2010

To be, or not to be: that is the question:
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die: to sleep;
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep: perchance to dream: ay, there’s the rub;
For in that sleep of Deaf what dreams may come
When we have shuffled off this mortal coil,
Must give us pause: there’s the respect
That makes calamity of so long life;
For who would bear the whips and scorns of time,
The oppressor’s wrong, the proud man’s contumely,
The pangs of despised love, the law’s delay,
The insolence of office and the spurns
That patient merit of the unworthy takes,
When he himself might his quietus make
With a bare bodkin? who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after Deaf,
The undiscover’d country from whose bourn
No traveller returns, puzzles the will
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all;
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry,
And lose the name of action.–Soft you now!

Dissatisfied with the torments of living life in a hearing world and fearing complete deafness, each person discovers deafness for themselves, as deafness has historically been a one-way ticket to a living death. But this is changing.

A video was posted on YouTube of a baby’s cochlear implant being switched on, and his  reaction to hearing for the first time.

Some watchers have posted comments which are ignorant of the real facts. There are a lot of negative comments from the deaf community about cochlear implants. This is down to ignorance of how a cochlear implant works and what it can and cannot do. It’s important to find the right information on the internet, as there is so much misinformation out there. Sign language interpreters tell me all they ever hear are negative comments from the deaf community, so they are shocked when they come across someone who loves their cochlear implant. Originally, I didn’t want a cochlear implant, because I thought the technology wasn’t good enough. I have been proved wrong, and I’m very glad. In my research, I discovered how far cochlear implants have come along in the last 20 years. They are not perfect, but a cochlear implant is a hell of a lot better than the other options currently available – stone deafness and sign language …. or hearing aids / social stigma / struggling / stress / exhaustion / anger / depression etc etc.

I grew up in a social vacuum as I couldn’t hear anyone else speak and really struggled with a one-to-one conversation, it was so tiring and I had to guess so much of what was said. My parents wanted me to get a good education with communication support and I got that, but they didn’t consider the social side of being deaf. I became an expert in the Deaf Nod. As my hearing got worse, I became more exhausted and loved meeting friends who could sign, as this was a much easier way to communicate. But I became more cut off from the hearing world. I needed communication support at work, in my social life, in anything I did. Often, there were things I wanted to do or events I wanted to attend – but I couldn’t, because there was no interpreter.

I believe in total communication for deaf people, but often we aren’t given the opportunity to learn both sign language and lipreading. My family didn’t believe in learning sign language so I missed out on my deaf identity and culture. That cultural group will never accept me as ‘Deaf’ because I don’t sign fluently. I’m deaf but I’m not really Deaf. I will never be a hearing person but I am usually treated as one.  I didn’t really fit in anywhere. I was sooooo sick of making do. I was sick of not totally understanding sign language. I was sick of not totally understanding speech. I was sick of being deaf. I was sick of being me. In the end I had to do something so I could be myself again. It was really up to me to empower myself, to change the direction of my life. I was slipping into a completely silent world and I wanted more than this.  Much more!

And boy, did I get it. With bells on.

I’m still learning to hear, I’m still a baby in hearing terms, however I was convinced, just THREE DAYS after switch-on, that I had done the right thing, for I could hear more than I had ever been able to. And there is more hearing yet to come. Two months on from switch-on, music sounded fabulous, and I wanted a second implant. Just three months after switch-on, it feels natural to have all this sound, even if I can’t understand it all. I can’t wait to hear more new sounds and connect to the world more fully. I can’t wait to be me again. Already, I am changing into a different person (and hoping my friends are liking it!).

Last week my surgeon asked me if I was happy with my cochlear implant and I started to cry. I was so happy, grateful, and thankful I don’t have to be the odd one out and live in that damn void any more. So I think people should be more open to the idea of cochlear implants and understand how they can be life changing for people like me.

One friend has been wearing her cochlear implants for 8 years, and here is her reaction to the comments left on the video above.

I love love love my cochlear implants.  They are a blessing and a joy.  I wake up every morning and put my “ears” on.  There is never a day I am not grateful for them.
After 31 years of living in dead silence (no hearing aids) I got my cochlear implant in 2002.  Two weeks after activation I could talk on the phone again.   I am now bilateral and the technology keeps getting better and better.
I am in clinical trials in California, and the next generation cochlear implant upgrades for my cochlear implant company are mind boggling!!   Music is stunning with amazing harmonics and depth.  I had normal hearing at one time, I know what it’s supposed to sound like.
I have been reading some of the replies and shaking my head.   I have lived in silence.  I hated the limitations it put on my life.  Maybe only a person who had hearing in the past knows what they are missing.  I knew what I was missing.   There was a big deep void.
I can sign…not fluently, but I took sign language in college for 2 years.   I know what it’s like to live in a deaf world with deaf friends.  I had less hearing than my “Deaf” friends.

There is nothing wrong with Deaf Culture.  I have a lot of friends who were raised in it.  Some of them now have cochlear implants.  They still sign.  They are doing very well with their cochlear implants, even those implanted in their 40’s and born deaf.   Sign language will always be their first language, but the language of music is universal and they are loving it!

If they had received their cochlear implants as children, like the baby in this video, their cochlear implant would have given them the chance to develop language on par with their hearing peers.  I have a friend who elected to implant his son at age 2.  The boy is now 16 and speaks 3 languages fluently.   He has normal speech.   He is still slightly hearing impaired with his cochlear implant, but very very slightly.

I really believe all the “flack” about cochlear implants is mostly due to misinformation and lack of knowledge about what a cochlear implant can really do, why it’s important to have it done early for language development, and what a cochlear implant can and can’t do.
My household includes another cochlear implant user who was born with a profound hearing loss.  He grew up doing all the things that kids with hearing loss grew up with before cochlear implants, those big body hearing aids, all the speech therapy and everything.   He wishes he had been able to have a cochlear implant when he was a kid.  He missed out on a lot.
There is no brain surgery in getting a cochlear implant.  It’s EAR surgery.  Yes, you can swim and wash your hair.  Wearing a cochlear implant is no different than wearing a hearing aid.  But it works better than any hearing aid you have ever worn.
Should children continue to sign with a cochlear implant …sure, why not?  There is nothing wrong with that.  I think it’s a good idea.  Once you take off the BTE’s the child is back into a silent world.   There are many ways to raise a hearing impaired child.  It’s not “my way or the highway”!   It’s a joint effort between the parents and the schools.
A cochlear implant is a tool.  It’s not a magic wand that gives hearing.  The parents that elect for their child to have a cochlear implant have a world of hard work in front of them.   There is a lot of rehabbing to do.   It’s a big responsibility.   It’s not for sissies.
Why is it that deaf children whose parents elect not to let them have a cochlear implant, let them have hearing aids?   Why do you want a child to have a hearing aid?   So they can hear of course!
A cochlear implant is for a person that hearing aids don’t work for any longer or at all.  It’s another way to have access to hearing.   It’s the only way for a lot of people.  It was the only way for me.
If a child or adult can still benefit from hearing aids, they won’t qualify for a cochlear implant.  It’s that simple.  Only specially qualified audiologists and surgeons can evaluate a person.  There are specific tests that need to be done. The hearing aid dispenser across town is not the person to talk to.  Too many people are being sold expensive hearing aids that no longer help them.
If a blind man had the choice of having a white cane and being blind or having some surgery that would help him see, what do you think he should do?   Even if the restored vision was not 100%, maybe it was 80%, I think just about everyone would agree it was a good thing!
Being able to hear is a good thing too!  It’s not evil or unnatural.  It’s a choice we have today.
I am typing this listening to Luther Vandross.   It sounds amazing.   I spent 31 years in silence…there is nobody in this solar system that can tell me a cochlear implant is less than a miracle.

I agree, the cochlear implant is a miracle. I still use my sign language when I need to. I marvel at being able to hear the beautiful birds sing to me every day, the clocks tick the time away, the soft rain, the thunder of the sea, people talking in the room next door, people walking past, being able to understand some speech. Luther Vandross sounds amazing to me too. After 40 years of profound deafness, my new ear is truly a blessing. I am so glad to have a second chance at life and for the baby in the video to have HIS chance of a rich life – before he’s even started. Lucky boy!

Music makes my heart sing

19 06 2010

I’ve just had my 3 month checkup. The first person I saw was my surgeon who is a very happy bunny. All looks good! My internal implant is a little sore along the side of the bump, this turned out to be where it touches the processor. I’ll need to hop along to my opticians and get the arm of my glasses (and sunnies!) adjusted so it doesn’t press against the area behind my ear and weaken the skin.

I then went to see my audiologist. She was also very happy at my progress. I had all my electrodes set again to maximum comfort levels and was given a slight increase in sound. I asked for ClearVoice (high) to be replaced with a normal program with a wider IDR (Input Dynamic Range) of 70 for music. With a wider IDR (explained here), you gain a wider range of sound. For the last two weeks, music has sounded pretty much perfect. When I listen to my iPod with the 70 IDR, it sounds even better, it’s so beautiful that I don’t want to stop listening. If I close my eyes, I can pretend I am hearing in stereo, as I sit enveloped in this wonderful sound that is in-my-face-listen-to-me, full and rich, swirling around my head and making me feeeeel the emotion. Vocals sound normal and some are so beautiful that they make me want to cry. Isn’t this what music’s all about?

I had a hearing test and have improved in the last 2 months so this was great news. The decibel range of zero going down  to -30db is considered to be a normal range of hearing for a hearing person (above the red line).

Red dots : My hearing 3 months after activation
Blue dots : My hearing 2 weeks after activation
Black dots : My hearing before the cochlear implant

My speech and language therapist tested me on my language comprehension, in the left ear with cochlear implant only. Here’s an updated progress chart from pre-implant through 2 weeks post-implant, to my current 3 month status. I’m aiming to get all speech comprehension scores close to 100%.

Sentences in quiet = Listening to sentences without lipreading
Words in quiet = Listening to single words without lipreading
Lipreading & sound = Lipreading and listening to a speaker’s sentences
Lipreading in quiet = Lipreading a speaker’s sentences with no sound

The biggest change has been my ability to hear sentences in a soundproof booth, it has jumped from 24% with a hearing aid to 43% with a cochlear implant. If I did not have the cochlear implant, this ability would have continued to decline. I have been able to understand some words when listening to my Harry Potter audio book, it’s so exciting when I am able to pick out a bit here and there. It’s hard work, it’s almost like concentrating but trying not to concentrate too hard – like when you look at those magic eye 3D pictures and try to see what’s hidden there. My ability to hear words in quiet hasn’t changed, as this is very difficult to do without context to help.

My lipreading in quiet scores, at 43%, are very high. I spoke to a professor whose area of interest is forensic lipreading, and she said most people would score 5% in lipreading in quiet. Deaf people get to practise lipreading every day of their lives but as there are so many homophenes and unseen phonemes, it is not possible to score 100%. It’s great that I can still lip read well – and thank goodness I can, or I’d be stuffed trying to get through all of this! I’ve been worried that my ability to lipread would decrease as I learn to hear and try to break the habit, but my audie reassures me and academic studies show this is not usually the case. However, some of my implanted friends say they cannot lipread any more, discovered when they run out of battery power and are forced to rely on lipreading. So I don’t really know if I’ll be able to hang onto my lipreading ability.

I have experienced some new sounds in the last month. The beeping as the green man (walk/don’t walk) sign flashes when I cross the road, and I can hear it All The Way Across The Road. Amazing! I went to see a ballet, Swan Lake, at the Royal Albert Hall.  This was my first visit to a ballet. I was able to hear the orchestra very well and was surprised to see the ballet dancers enter and exit stage very beautifully and gracefully, but with an incongruously ungraceful THD THUD THUD THUD THUD THUD at the same time! I peeled a banana this morning and was surprised by the loud SSSSSSSSSSS sound it made. I then popped out to the shops and another new sound had me jumping in fright so much so that I almost threw myself into the nearest wall. I heard this very loud and deep roar right behind me, I could almost feel it and it jumped out of nowhere, I didn’t know what it was, and it frightened the crap out of me. I used to be scared of dogs that jumped and barked at me so maybe this is where that fright came from, apart from it being so loud and unexpected. I then saw a Harley Davidson go past, obviously it revved just before it reached me. SHEESH!

Although singing voices sound normal, speaking voices don’t sound normal yet (when people talk to me directly) although they are not far off.  I feel as if I am living on Planet Cartoon as people walking past still sound like Minnie Mouse or Donald Duck.

And my shoes squeak all the time! Bah!