This is one woman’s experience after being fitted with a second cochlear implant

In February 2014 I was fitted with my first cochlear implant – what a world of difference it has made! I had no idea of what to expect but I did not anticipate the level of noise I would be ‘hearing’. For the first time in decades I had high frequencies. It took about two months before my brain had learnt enough to begin to translate some of the noise into meaningful sound – words, sentences and environmental sounds.

 

I was assessed for what level of ‘understanding’ I was achieving after about three months, part of the normal process. The combination of one implant plus a hearing aid gave me an understanding level of 93% - pretty good! The actual level of understanding I was getting with the first implant alone, after some twelve months of adaptation and brain training, was about 86%.

Eighteen months later, it was determined that I was eligible for a second cochlear implant and the surgery was scheduled for February 2016. This raised questions for me as there was no guarantee that I would achieve a similar result as I had with my first implant. There was also the fundamental question of actually losing one of my natural senses completely, my hearing. It didn’t matter that what I had left in my remaining ear was barely registering any sounds. The impact of becoming totally deaf is quite profound and should not be underestimated. I decided that to help me deal with this, even though it was totally in my best interests, was to see a professional counsellor and I highly recommend this for anyone contemplating any cochlear implant.

I had thought that because I had been through the process of an implant already and it was now two years later and my brain adaptation had been very good, that I would have an advantage. Not so! The second implant was connected to a different area of my brain, meaning that I had to go through the whole process of learning and brain training from scratch.

After the second implant ‘switch-on’ had taken place (about three weeks after surgery), I would go and sit outside in the back yard of my house and listen to the birds. Everything was totally different – I found I needed to identify the different bird calls all over again. The voices of my friends were quite different too. With two implants, I was now getting high frequencies on both sides, plus the quality of sound was quite different.

Initially I found that I could only last for about two hours before my brain would want to take a break and literally feel like it was going to switch off. This is a process that has been ongoing over the past few months, although the period of ‘staying on and connected’ mentally grew longer as I adjusted. What I found is that to be able to communicate at any level now and particularly since I had my first implant, requires 100% focus and concentration – all of the time. There is simply no other way to do it. This is something that many people just don’t get and it is enormously tiring, mentally and emotionally. I am very fortunate in that I have developed a high level of communication skills over my lifetime. I concentrate very well, have a very good level of speech reading, can read tone and body language very well. This is because I have been hearing impaired ever since I was a baby and since the loss was progressive, I learned to compensate along the way.

One decision I had made in 2016 was to strictly limit my social activities in order to give myself the best possible chance for full adaptation to take place. I realised that in 2014, when I had my first implant, I had no conception of what it would take to maximise my chances of becoming a successful implantee. Consequently, I found I had put myself under an enormous level of stress by doing far too much, for about twelve months and in retrospect, anything that minimises stress during adaptation is the best way, in my opinion. It is very difficult when we, our family and friends have absolutely no idea of what is going to happen after we receive a cochlear implant. Sure, the staff at the relevant cochlear clinics give us as much information as possible, but this is something that can only be appreciated once it is actually experienced and even then, everyone’s experience is different. Some of us start to recognise sounds relatively quickly and others, like me for example, can take two months or so to start to recognise basic words. Prior to that, it was simply noise in my head and far too much of it! I was able to recognise very simple sounds – the ticking of a clock – almost from the first day after switch-on.

Even though I was actually hearing a lot more sound and everything was considerably louder, I felt that I was not actually ‘hearing’ as well as previously. There were the regular visits to the cochlear clinic where the new processor was gradually ‘tuned’ for sound threshold and maximum levels. Because the auditory nerve on my newly implanted side is not used to the new levels of input, it is vitally important to proceed slowly with turning the sound levels up. In addition, the brain is going through a whole new level of adaptation.

I have been using closed captions to watch TV (except for ‘live’ captioning, which drives me mental because it is usually lags behind the speech and has errors) and haven’t been able to go to the cinema to watch movies for at least a decade or more. I simply cannot follow any dialogue without the help of sub-titles. In my much younger years I was a massive fan of film and would often go to the Valhalla Cinema (an alternative movie venue) in Melbourne some three times a week, so the loss of being able to comfortable attend movies has been significant. I had imagined that with two implants I would be able to understand a lot more when watching videos etc. In some ways I do, because the actual sound input is greater, but my understanding is to be less at this stage. I still need closed captioning and sub-titles, but am finding that I am also beginning to actually ‘hear’ more of the dialogue when I watch TV and videos.

I went to my three month cochlear evaluation to assess how much understanding I was actually getting with my second implant and what the combined result would be. It turns out that I currently achieve a level of 60% with my new implant, which should continue to improve over the next two years, especially if I do some dedicated brain training with just that ‘ear’. The combined result for both implants is 86%, less than what I was achieving with one implant + hearing aid, but is expected to improve over the next two years. I cannot complain when the across the board average level for all cochlear implants is around 54%. In my case I demand the maximum I can possibly get from my implants and am prepared to do whatever is necessary to ensure that for myself.

The audiologist made some very pertinent comments when I questioned why I seemed to ‘understand’ less than before. The first was that the way someone responds to the interaction of two implants differs with every individual and that there is no way to forecast what results a double implantee will get. Much of it depends on individual brain plasticity (the ability to learn new things). The second was that by removing my hearing aid and replacing it with the implant – essential since my ‘aided’ hearing was fast becoming non-existent – we had also removed decades of experience and brain training. It may seem obvious but this was a revelation to me and also made perfect sense. Phew! It meant that things would undoubtedly get better and I am completely committed to getting the very best out of this amazing technology that I have been privileged to receive.

Pat. Mitchell