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.

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41 responses

17 09 2011
Я.

Such happiness is contagious and I’m convinced that is the main reason for me to go for my CI too! I’m so happy for you, proud of you, [insert more here]!

Enjoy the surround sound to the max! 🙂

17 09 2011
wendy

I can only say how proud I am off you Tina, its such a journey and all the better when things go so smoothly!
Onward and upward, enjoy.

xx Wendy

17 09 2011
Rich Harder

The video is great and I’m happy for you. I have 2 CI’s that were implanted about 2 years apart, and 2 are definitely better than 1. I lost my hearing as an adult, so I can’t relate totally to your experience, but it is exciting to be able to understand speech with your CI.

Goo luck and I hope everything continues to improve for you.

Rich

18 09 2011
Andy

I thought you would have fun with it! Many years ago when I was first fitted with two hearing aids instead of the (standard) one I discovered that 1+1=3 where hearing is concerned. The two inputs give you a sense of direction and depth to sound that helps to sort it all out. So you understand sounds better. It will be interesting to see if you find the same.
I do have some memory of sounds from when I was small so my progress has been fairly fast. Even so I am discovering new noises all the time. I can hear the weather girl on TV breathing! Just had a male voice choir on the radio. Ugh! The sound is too complicated for me!

Have you tried any accessories yet? I am going up to Bristol next week for a demo of some of the additional gadgets that we can use. I already use the patch cord to listen to the radio and also for the electronic metronome. You get a clearer sound like that. On my good days I understand every word on the TV and radio. On my bad days it’s back to the familiar garble. I am also due a retune. Currently everyone has deep bass voices….
Rock on!

18 09 2011
Admin

Wow, you’re doing well Andy! Fabulous. My employer is buying a FM system so I will try that. It might just do the trick for me and help me to stop relying on lipreading. I can’t believe you can hear someone breathing on TV – is that normal?!

18 09 2011
Ruth Campbell

Terrific Tina!

It is great to read your honest, detailed impressions with all the emotional baggage included. For me, as an experimental psychologist, your account of the changing sensory experiences from one to two implants, and your comments about your previous preference for two aids are very illuminating and set me thinking about the varied sorts of tuning of the auditory brain in relation to different levels of hearing proficiency.
One small note – I doubt that it was just one half of your brain that was tuned by your monaural implant. if you want to really impress your friends (and the professionals!) with your knowledge of auditory neural pathways take a look at http://neuroscience.uth.tmc.edu/s2/chapter13.html.

All the best,
Ruth

18 09 2011
Admin

I’ll check out that article, thanks Ruth! This is going to be an interesting journey, I think!

18 09 2011
Catherine

Hi Tina and thank you for sharing your video. You were constantly working your mouth as if suppressing yourself, and it was easy to see from that and your breathing just how breathtaking the whole experience was. I do hope to join you soon one day. Your comments about sounds sounding more natural, followed by the half-apologetic, “How would I know, I am born deaf,” sound just like me. It is strange how we just ‘know’ that sound is right! Have fun with this girl, it’s a good time to be a kid again!

18 09 2011
Catherine

I forgot to check the notify me!

18 09 2011
Admin

I was so nervous! It was unexpected as I was very calm about my activation, right up until I sat down. I am not normally so fidgety!

18 09 2011
Andy

@catherine… no it’s not quite like that. Babies and small children learn to listen from the earliest possible age. They are not aware that they are doing it but all the time they are hearing and identifying sounds almost from birth onwards. As children get older they use that earlier knowledge to learn speech by listening. Take listening out of that equation and you have the typical Deaf child. No speech because they don’t know what sound should be like. It’s really tough to get past that and is why BSL is so valuable to Deaf people.

The latest research shows that something called the P1 latency is critical in proving that giving small children a cochlear implant is justified. This is because from the time of the implant onwards they have to learn to hear. The less they are behind with that the more successful the adjustment process is.

The significance of the P1 latency is that as hearing children get older the latency time shortens. At birth it can be as much as 300 mS but then it goes down with time to the adult level of about 100 mS as the child matures. 100 is within the “normal” range, there’s a statistical norm for this.

In Deaf children this doesn’t happen. The latency remains the same as it was at birth, about 300mS or thereabouts (depends on the degree of deafness etc) and now when you implant the child the latency is far behind wot it oughter be. >>This is lost ground that has to be made up. If there is previous experience of sound, however slight then the P1 latency will be lower. This is proof that if the brain is stimulated from the earliest possible time the latency will drop to within “normal” levels. There is new research on brain stimulation and P1 latency.
Google for P1 Latency and I am sure you will find out more. Even some audiologists don’t know about this, it’s still hot from the oven.

18 09 2011
Catherine

Andy, I am recovering from a two day bout with the flu, and your response with the P1 latency went straight over my head. I will come back later to figure it out. Not sure what it is you are referring to, the intuitive sense that the sound from two ears is the right sound?

23 09 2011
Andy

The significance is that if the brain remains unstimulated by sound for a long period then when the ear is implanted there is lost ground to make up. There is no previous memory of sound, therefore it has to be learnt.

If there IS previous memory of sound then progress post-op is likely to be easier and quicker because there is already a knowledge of what sound ought to be like. I think having two working ears just makes that easier and that is why children have two but adults tend to only get one in in this country. I advocate two at all times.

The P1 latency is a way of detecting and investigating whether there is previous memory of sound by measuring the response time to noises. If the brain has previously been stimulated by sound that effectively skips a stage in the rehab process. There are other things to be learnt from studying P1 latencies.

Here it is demystified…

http://www.alexorl.com/alexorlfiles/pptorl2007/156001.pdf

24 09 2011
Catherine

Hi Andy
Thank you for posting that link. I checked it, and found it way too technical for me to take it all in. I bookmarked it though.
Now, Andy, can you tell me from this information if having hearing memory in one ear help you with the other ear? My sister and I are twelve years apart and both of us born with I guess ‘sensorineural hearing loss (I always called it nerve deafness).’ I eventually ended up using both ears, my sister didn’t. I am trying to persuade my sister to a CI, and might have a better chance at it if I could tell her that she will be able to have the unused ear implanted first, and be able to use it. She is 75 years old. Your input would be appreciated.

24 09 2011
Tina

Hi Catherine

It might help to pass on what my audiologist said to me last week. I asked if it would have made any difference which ear I had implanted first, would my ‘better performing’ HA ear have given me a better result if I’d had a CI implanted on that side first. She said no, because the brain has learned to recognise sound with one CI (note I am not using ‘ear’), and the second CI has been able to capitalise on the first CI’s learning curve, making it’s own learning curve much shorter and faster. It’s a brain thing. Having a hearing memory will help so much with recognising sounds.

18 09 2011
Joe

Like Catherine, I noticed your body language also, but then I’m attuned to things like that. What an interesting video! It’s a good way to show others what the activation process is like. I’m will have to record my bilateral activation, whenever that is… I suspect I’ll be pretty choked up no matter what happens.

18 09 2011
Admin

Switching on both at the same time is going to be quite tough to deal with, it’s a lot of volume and you don’t know what to expect. I hope all goes well for you, Joe!

18 09 2011
Mark

I love the “robots on helium!” It’s word-for-word the way I describe it to people. I’ve had my left CI since June and am getting the second at the end of October. Reading your blog makes me think that you’re telling my story (music, words, everything) only I was late-deafened. Now I’m really looking forward to the second one.

18 09 2011
Nanna

Congratulations! You look happy, and I love your haircut.

Yes, your body language is in an interesting ‘wait and see’ position and you keep biting your lip, but in between you relax a little (what am I saying?), I was stiff as a board at my activation and although I could hear some sound, I was completely freaked out.

The two audiologists did not get any happy/happy/happy from me. In DK, they turn the volume very high (comparatively speaking), for you have to wait more than six weeks for the next mapping.

Now, almost two years later, I am totally happy/happy/happy with the CI. You will be too!

18 09 2011
Admin

OW! OW! OW! That must have hurt. I feel it’s like pushing through the pain barrier, constantly turning it up and up. Last year was tough! I have a mapping tomorrow, I’m still not looking forward to more volume! I can totally understand why some pre-lingually deaf people won’t work with a cochlear implant. It’s much easier to take it off and enjoy the silence – as I did today – *smack!*.

18 09 2011
Catherine

Ouch, Ouch, Ouch, indeed!! I suppose you started off with the volume wheel turned all the way down, Nanna! And have fun tomorrow, Tina.

18 09 2011
Nanna

Yes! Working woth a Cochlear Implant takes a mean bit of perseverance, self-containment and real desire to be part of the hearing world. I have not regretted my decision to have a CI, but that first year was tough.

It felt as though I was constantly fighting against very hard odds, but slowly I started relaxing and slowly I started responding to life and to people around me. Best of all has been the way my GSD listens to my voice when I whisper, softly; when she cocks her head and looks at me sweetly. Even with the HA, I couldn’t control my voice enough to whisper sweetly in anyone’s ear, let alone into the ear of a dog with supersonic hearing!

18 09 2011
Catherine

My nephew has that perfect pitch hearing, and gave me this definition of whispering.

“”While pondering your comments about the “loudness” of consonants I thought of how they’re used as accents. That made me think of whispering.

When one whispers virtually all that’s heard are the consonants. In fact “real”* whispering is ONLY consonants with the sound of one’s breath being the closest thing to a vowel sound. And, yes, the “shape” of the different vowel sounds can be distinguished in that voiceless breath.

[*Very quiet talking is often mislabeled as whispering if it is thought to be sufficiently low in volume for others not to hear such as kids in church talking below the voice of whomever is speaking/singing. This is usually less effective than hoped which is why they usually get “shushed” from their parents.]””

Being born deaf, I found this fascinating. I always thought there was some vocalizing.

18 09 2011
Admin

That’s a new one to me Catherine! I agree, it’s fascinating. Thanks for posting this.

18 09 2011
Howard Samuels

Very moving, Tina! Only those of us who have been through an activation can begin to imagine what was happening in your mind while these momentous changes to your life were being programmed with a mouse.

Your audiologist was very prepared with tissues! She seems quite knowledgable and experienced, but you may be her first adult bilateral recipient. So keep that in mind during your appointments – you can provide feedback about your percepts that a child may not be able to express.

18 09 2011
Admin

I probably am the first adult bilateral they’ve had in this hospital – she did say it’s very rare to see a sequential patient. I will be doing my best to give good feedback!

19 09 2011
John Cradden

Congrats Tina! Sounds like it all went well for you. I had my activation the day after (or before, can’t remember) and went well too, although we have different hearing histories i think. I posted an entry on it here.

http://www.johncradden.ie/2011/09/18/an-understated-moment/

I had brought in the camera to video the activation, but my wife pressed the wrong button. D’oh.

Went in today for first mapping, and it sounds better now, richer. Must hook up when you next visit Ireland again!!

20 09 2011
Bill Holman

Tina,

Thank you so much for sharing this 2nd activation experience! I am now much more excited and confident about going bilateral, too. Your experience has shed all doubts I’ve had about doing so. Looking forward to future updates on you progress and bilateral hearing journey.

21 09 2011
Sammarcko

Good on you Tina.
* Breathes huge sigh of relief*.

21 09 2011
Tina

Looking forward to hearing about yours! (You’ll do just fine)

24 09 2011
Andy

My surgeon said to me that the team’s experience of people’s rehab so far is that if there is previous memory of sound that short-cuts the learning process. This ties in with the P1 theory.
I believe that is what happened in my case. I wasn’t born totally deaf and it looks as if I had some memory of sound from that stage. This would be why I am making quick progress.
Also the surgeon asked me which was my best ear. I said Right and so he said we will implant the left one. When I asked why he said it was because if anything went wrong I would still be left with the most usable ear of the two. That’s fair logic.

P1 latency. Please try to take in the significance of it. I agree that the notes are not the easiest to understand, I had to read it through about ten times to get the idea.
It compares the P1 latency figures between Deaf and hearing babies and children at various ages. It shows clearly that kids who have never been stimulated by sound take longer to figure it all out.
This is information that was passed to me by a professor at Johns Hopkins. It’s not lightweight stuff but it is the very latest thinking. So it’s worth getting into it as it has implications for the future treatment of deafness using CI’s.

24 09 2011
Tina

I find P1 latency difficult to figure out as well. I understand the concept, but those graphs!! Argh!! It supports my thinking that pre-lingually deafened cochlear implant recipients should have Auditory Verbal Therapy to help figure out what’s what, and not just be left to their own devices after a set of mapping sessions.

24 09 2011
Catherine

I will try again later to take in the significance of it. Particularly since I want to build a case for bilateral hearing. I need all the armament I can get. And thank you Andy for not only posting the link but posting its credible source!

25 09 2011
Howard Samuels

Andy, that paper on P1 latency is interesting. If I understand it correctly, P1 latency is the amount of time after the syllable ‘ba’ is presented that elapses until an electrical response in the brain occurs.

Interestingly, nearly all of the experimental data comes from what looks like cell phone pictures of another researcher’s work! But in summary, P1 latency starts high, and decreases to normal levels in 3 cases – newborn babies, people with auditory history after being fitted with hearing aids, and people with auditory history after receiving an implant.

The only group that doesn’t experience a drop in P1 latency is people who have no auditory history.

It’s a very strong statistical correlation. But I wonder how well P1 latency relates to hearing performance. I suspect it might correlate well. When the sound track of a movie is delayed slightly, most people don’t notice. But I think when the delay is increased to about 200ms, it becomes quite noticeable compared to the video.

So it is a jump from brain response to a singe specific syllable to overall speech comprehension, but it seems that some of the intermediate pieces of information support the conclusion.

25 09 2011
Andy

Yes that’s my interpretation too. It is actually a PDF file made from a Powerpoint presentation, that’s why it looks a bit odd. The chap that wrote it has drawn together research from several different sources and posted them as a sequence. The most interesting panel is the one labelled P1. It sums it all up.

From these data we can make some conclusions.
They reinforce the idea that small children should be implanted at an early age; because they will benefit from it all their lives.
It also enables a form of detection so that those who DO NOT need an implant can be picked up and fitted with hearing aids instead. If they have a satisfactory P1 figure they don’t need an implant.
It provides an explanation why people who have had no hearing at all struggle with the CI. It’s because they need that extra period of stimulation to figure out all the noises and put them into some kind of order. As in the infant, this can take a long time. People with high P1 latency may have to struggle that bit harder to get there.
As I say all these implications are being considered and where possible researched. Whether it turns into a Red Herring nobody can say because it’s only one line of many. But some conclusions can be made as you see.

29 09 2011
cyborginafield

Hey Tina, just got round to reading yer second switch on post. not watched yer video yet. Sounds brilliant.
Go for it girl.
You gotta get oot of the city and listen to those rustling autumn leaves.

Onwards and upwards.

Im doing my exhibition just now about how I hear with my C.I. Check out my video ( done for my dad as hes in hosp) http://www.youtube.com/watch?v=EL-8cMJAdFA check it oot.

Enjoy the world of surround sound 🙂
Maybe one day we can all have 2 🙂

29 09 2011
Tina

Hi Soozie, great video! It’s good to hear about your progress too. An update is coming soon on mine!

8 10 2011
Peter Stelmacovich

I enjoyed reading this Tina! Plus the comments on the P1 latencies was interesting.

How does the device sound now? How long has it been since teh second one was turned on?

8 10 2011
Tina

It’s been 1 month – blog post coming soon!

13 10 2011
Tarah Beason

I love the way you described everything in your story! I enjoyed reading it. I am with an organization called “Families For Bilateral Hearing” and I was wondering if you cared that I put your story on our site? Check us out @ http://www.ffbhearing.org We are a non-profit and our mission is to provide or assist in obtaining a 2nd cochlear implant to deaf children in Washington State. Thanks!

13 10 2011
Tina

Of course you can post my story. I might even pop in one day as my brother’s family live in Sammamish. I’m glad I have a success story to tell at all! 🙂

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