Q&A for possible cochlear implantees

A few months ago, a friend with a cochlear implant recently asked me to engage in some email correspondence with a chap with a roughly similar hearing background to me who was being assessed (and possibly still is, at the time of writing) by the Beaumont CI programme for a possible implant.

He had quite a few questions as it turned out, and the answers I wrote him helped to crystallise some of my own thoughts and conclusions to date about my own experience. I ‘ve reproduced them here, without the person’s name, as they probably help answer some questions other candidates may have or for those who are just curious.

Hello [name withheld]

Nice to hear from you. Delighted to offer any insight I can as you start your ‘journey’. It’s a word I don’t particularly like, but I can’t think of a better one that encapsulates all that you will experience if you go far enough down the road of actually getting a CI.

Thanks for the kind words re the blog. It’s very much stream-of-consciousness stuff and ramblings; I have had the notion of writing something resembling a book or a perhaps an ebook but, to date, I can’t think of an original enough angle beyond the boring memoir genre. But watch this space, as they say. It may not happen for another few months at least as I’m still getting to grips with all the ramifications of my own implant – its only been five months since my switch-on, after all. I would very highly recommend you read Michael Chorost’s memoir, Rebuilt, particularly if you’re at all interested in the technology behind it and the social impact of the technology. I’m no techie myself, but I found it profoundly insightful for a whole variety of reasons. He’s a very good writer, very readable and engaging.

But I shall do my best to answer your very good questions:

Does speech sound like a “Dalek with laryngitis” as a uk politician once said ? 😉
I think this quote is from Jack Ashley, [recently passed away] who got an implant many years ago. It’s worth pointing out that his own implant was probably quite some way behind the current technology, particularly in terms of the number of auditory channels – he might only have eight or even four. Today’s implants have between 16 and 22, depending on which manufacturer you go for. The more channels you have, the better for sound quality. Eight channels sounds far, far rougher than 16 or 22. For me, speech sounded surprisingly normal right from the very beginning, but any of the weirdness that people often describe on being switched on was probably ‘masked’ a good deal by what I still heard in my hearing aid ear. It takes a while for the implanted ear to become the dominant ear, but it does eventually. The short answer is no, speech really sounds quite OK at the beginning and becomes even more normal. Voices in general, for me, sounded a bit more lower-pitched and more monotone. Chaps with deep male voices sounded like they had marbles in their mouths. But that’s the worst thing I can say at this stage. It’s the more complex sounds that are more difficult to process, particularly music (did you read the article of my interview with Richard Reed)?

Would you consider having the second ear done?
Yes, I think I would, although it if were offered to me now, I probably wouldn’t.  Since the implant, my right ear, which was my good ear, seems to have taken a step back and simply isn’t working as hard. I hear so much more in my implanted ear now, which has long since become the dominant ear. Of course, as you probably know, Beaumont doesn’t have the funds to do bilateral implants except in exceptional circumstances, but the more evidence that emerges of the benefits of going bi-lateral (which are growing in number), I think it’s only a matter of time before it becomes more common. In the meantime, the fear that my hearing aid ear would ‘shut down’ (some implantees with a HA ear report that it shuts down very quickly, a matter of months, rendering it practically dead) doesn’t look like it’s going to transpire just yet. When I listen to something on the headphones or speak to someone on the telephone, that is when it’s most useful (and being a journalist, this will be important for me in the short- to medium term). However, my right ear is likely to deteriorate more as the years progress, but it hope it holds up long enough so that by the time I’m considered for a second implant, the technology will have moved on a bit (ie optical cochlear implants seems to be the nearest thing to the next generation, but efforts to stimulate cochlea hair cell ‘regeneration’ seems unlikely to happen for a good twenty or thirty years from now).

How did they decide which ear to do. Were you tempted to get the dominant ear done first?
For some people this is quite an easy decision but for me, this was a very very difficult thing to decide, and even now I’m still not 100pc sure I made the right decision, but I think I did. In the beginning, I was adamant I would get my right ear done first. It had always been my better ear, the ear that gave me all the sharpness and allowed me to appreciate complex music and use the telephone comfortably. So I felt I had an emotional duty to make my right ear the implanted ear, as a reward for all its years of hard work. If that sounds totally stupid, it probably is, but gradually the logic of doing my left, weaker ear became more convincing the more I talked to others and read what other people had to say online about the subject. The main logic, of course, is that if something goes wrong, you still have your better ear. But more than a few people pointed out that doing your weaker ear makes sense on a pure rehabilitation level if you plan to go bilateral eventually – your weaker ear will, by extension, become your stronger one until such a time as you get your second implant. I added a logic of my own, hinted at in the previous question, which is that by the time I do get a second implant, the technology would be better and the auditory ‘memory’ from my right ear and auditory nerve would still be fresh enough to get the most out of it – possibly more than I’m getting out my current implant in my left ear. Basically, my heart said my right, my head said my left, and the head won out.

How long was your wait from your first screening meeting to having the operation?

Exactly a year – slightly shorter than I expected. Some have had to wait longer, others a little shorter, but not by much.

Did they get you to try digital hearing aids and if not why not?
I’ve actually worn digital hearing aids since 1997 and never looked back. I think they made a huge difference in my case – at the time – from analog ones. The second set of digital aids I got, in 2007, were the second most powerful in the range but, by the time of my right ear deterioration in 2009, it become underpowered very quickly. I only found this out when I did the hearing aid review at Beaumont as part of the assessment programme (which they do with practically everyone as I understand it), when the audiologist did a test and prescribed a more powerful Phonak hearing aid. I didn’t realise they made hearing aids more powerful than the ones I had at the time. It made a little difference, but not a whole lot. I still have that hearing aid in my right ear.

Are there many settings to tinker with on the processor and which one did you get?
I got the Cochlear Nucleus 5 processor and the current implant. I would have preferred the Advanced Bionics Harmony processor and implant but, unfortunately, it was the subject of a major recall and the Beaumont wouldn’t use them, so I didn’t have the choice. But I understand the recall has ended and Beaumont are using them once again. Interestingly, one of the many reasons I wanted it was because it was the type of processor that adjusts volumes and sensitivity automatically depending on what situation you are in. The Cochlear version doesn’t do that. However, there isn’t much to fiddle with on the Cochlear processor – just volume and sensitivity. The fiddling is really around the four programmes – everyday, noise, focus and music. I tend to stick with everyday, with noise for noisy settings.

Annoyingly enough, my implant was the subject of a major recall, which was announced ONE day before I got switched on. I can only hope and pray that mine was not part of a duff batch of implants that apparently more or less shut down after a year or two and have to be removed and replaced! So far, no-one in ireland has been affected [ed note: I’ve since learnt that three people to date have been affected]

You may not have the issue of lack of choice by the time you are scheduled for surgery – assuming you are – as the Cochlear recall will probably have ended by then.

If you want me to offer any more advice on which manufacturer you should go for, I’d be happy to. There are all kinds of considerations but, in a nutshell, if I had the choice again, I would still go for AB, even though the processor is bigger and uglier than the Nucleus 5, which is very discreet. The underlying technology seems to be that bit more advanced, and the implant electronics have more space to cater for processor upgrades, so it’s more future-proof, if that makes sense. For many people, it’s a serious consumer maze, but in a way, the whole AB vs Cochlear choice reminds me a little bit like the old Apple vs Microsoft war of the 1980s and 1990s. AB – on the face of it – is like Apple; smaller (although apple is now bigger than MS – go figure), more innovative, more pioneering, and inspires an almost cult following among many techies. Microsoft is Cochlear; still the giant among CI makers, but the technology isn’t as impressive, and the company is more businessy, corporate.

I must emphasise that this is just my view and reflects my own outlooks and attitudes. Take my views on board by all means, but do do your own research and come to your own conclusions – assuming you have the choice when the time comes.

Anyway, I’ll stop now before I bore or bewilder you. But as a final word on the topic, I’m delighted with my Cochlear Nucleus 5. It works in the all the ways that it should and I’ve had no problems to date, touch wood.

Finally – are you happy with it ?

Absolutely. I’m still getting to grips with it and there is more to come, but everything is working well and as it should, which is the biggest relief. As you can probably appreciate by now, it takes time to for it to make the difference and time to habituate yourself to it. Some notice the difference straight away while others take longer – everyone is different. The adjustment phase, for me, is taking longer I think than I expected but only because it’s in my left ear, which was never my good ear. The brain is having to rewire itself to tune more into my left ear than my previously dominant right ear, so that is adding an extra element of adjustment. But what amazes me, even after 6 months, is that the change is still happening – you apparently should reach your ‘peak’ after a year or so, on average – and it has been steady rather than dramatic. But the difference compared to six months ago is dramatic. I’m (just starting) to use the phone again, able to sometimes follow the TV without subtitles, converse with people face to face and in groups far far more easily, hear the radio (still a work-in-progress) etc etc. Not to mention hearing things I’ve never heard before.

I think one of the best things is that I have two young children – 18 months and 5 – and being able to hear them far better than I did before is just the most wonderful gift and at exactly the right time, particularly since they’re both chatterboxes!

In a nutshell, there’s no way to say if you will be happy with it, as the range of outcomes is quite varied, but they do say that those who have normal hearing for at least a few years get the very most out of it. So you, if anything, are far closer to being the ideal candidate than me, and certainly [name withheld].

I’ve yet to meet one implantee who regrets it – although I don’t get out much. The beaumont team are fantastic. You’ll be in very good hands, if it all goes ahead.

Best of luck


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