October marked one year since my cochlear implant (CI) was first switched on and I’ve been having tests to measure my progress so far. I’ve reached the end of the auditory rehabilitation programme and planned appointments reduce to yearly. Many people continue to make progress beyond a year and improvements in CI technology should bring future benefits. But, for now, it’s time to look back and reflect on this first year.
It amazed me how soon after my CI was activated I was able to hear quiet sounds, and I marvelled at the sight of my audiogram, with its marks between 20 and 25 decibels across all speech frequencies before very long (using the CI and, later, CI plus hearing aid).
My speech perception was measured pre-implant and at six and twelve months. Listening to sentences (with aids pre-implant and CI plus aids afterwards, and no lip reading), I heard less than half (46%) pre-implant, but 80% at six months and 96% after a year. On a test of listening to single words, my score at a year was 86%.
On the Categories of Auditory Performance Score, which has a rating scale from 0 to 9, I’ve improved from a 4 (“discrimination of speech sounds without lip-reading”), to an 8 (“able to follow group conversation in a reverberant room”), to a 9 (“able to use the telephone with an unknown speaker in an unpredictable context”). I can’t see myself ever being that keen on making phone calls but must award points to my surgeon for correctly predicting that I would be able to hear on the phone.
I’ve also recorded significant improvements on the Hearing Handicap Questionnaire, designed to capture perceptions of hearing loss and its impact.
Expectations versus reality
My expectations were very vague; just a general sense that I would hear better with the CI than with my aids. I had not imagined such an enormous change in my functional hearing and with it the huge impact on my life. I hadn’t imagined that I would feel like myself again.
The worst bits
It was hard walking to theatre, feeling scared about the anaesthetic (my first); to put myself on the trolley and relinquish control.
The first few days after switch on were something of a shock, especially the first 24 hours. I had been warned that voices would sound robotic, but that didn’t begin to capture the reality of speech being unintelligible at first, and then all voices sounding the same for a while.
I worked hard at auditory exercises to help my rehabilitation and I’m very glad I did (I’m assuming they helped my progress). But they were difficult and boring! In the third month of using my implant, I felt demoralised by a slowing of my progress. But just a fortnight later I was enjoying a watershed week, with positive leaps forward.
The best bits
So many good bits! I loved the novelty of streaming music into my CI and listening to it whilst walking (or dancing!), something I continue to enjoy – and my ability to hear music should keep improving.
The capacity of the CI to dampen down background noise and prioritise speech is amazing, and during meals out I have found myself better off than the people I’m with, who have normal hearing.
Discovering (just four months after switch-on) that I could have a conversation with my friend, in a shop, despite wearing masks, was a great moment.
My ability to converse with ease is a daily joy. While they aren’t the most important conversations, I am so thankful that I can now enjoy easy exchanges with strangers, where so often I would have made a hash of these (to our mutual embarrassment), cut them short or avoided them altogether. A notable moment was when a stranger, whose facial palsy meant I couldn’t lipread her, struck up a conversation with me and in a short space of time touched on her widowhood, cancer, and hopes to move to the area. I was so glad (relieved!) that I was able to hear her, and it was a reminder of how far I’d come.
The ease with which I was able to chat to people (anyone and everyone!) at a conference in May was a delight. Even in the bar! It was such a transformation from past experiences of such events. It was the moment when I thought, well, I am truly myself again.
I was surprised at feeling groggy for a week after the operation. Perhaps I should have expected that!
Whilst I knew that living with hearing loss is tiring, I hadn’t expected to find myself with so much more energy once I was hearing better with my CI. This feels like a huge bonus.
Overall, I’m surprised by just how changed my life is now, how well I’m hearing and how liberating that is.
I enjoyed surprising my close colleagues at that conference by behaving so differently from at previous ones, where early attempts to help welcome people, for example, would soon give way to me generally hiding. Thanks to my CI, I could engage fully and enjoyed being in the thick of it.
The only disappointment is that my lovely mum is no longer around to share all this with me. She would have been so delighted about my cochlear implant and its transforming effect, and so interested in it all. Mum became profoundly deaf in her middle and later years and I wish she had been able to have one too.
What’s still difficult?
Echoey rooms are still difficult acoustic environments – perhaps for everyone.
Rapid speech can leave me behind still, as was demonstrated during a recent visit to the theatre where I followed very little of the dialogue. The speed at which I can hear and process speech has been tested and has now reached around 70 words per minute, which is still short of the 80 to 90 which would allow me to follow rapid speech. I’m told this should keep improving and that listening to podcasts and the like is useful practice, so I must keep at it.
What has helped?
I have found that there is plenty of support for people waiting for, or using, cochlear implants, and this is such a positive thing. Joining the waiting list for surgery was the point at which I was invited to join a Facebook group of implant candidates and users, and it’s a place where people can share experiences and ask questions – often practical matters related to managing a cochlear implant. There is also ongoing support from the CI company, and the local implant team can be contacted by email.
I have also benefited so much from having a supportive family and colleagues, a flexible job that doesn’t involve much talking and listening, and both the skills and resources to access auditory training online and manage my CI.
Meeting the surgeon to discuss whether I would go ahead with having a CI, I was glad that I had prepared well, including listing the questions I wanted to ask.
Of course I can’t know how my efforts doing auditory training exercises have affected my outcomes, but I imagine they will have made a difference.
When technology goes wrong…
I was without my CI for a little over 24 hours recently and it was awful! Reliant on just the hearing aid in the non-implanted ear, and lip-reading, I could follow slow and careful speech only with great difficulty. I don’t remember it being that bad in the weeks between surgery and CI activation so maybe it’s worse for the sudden contrast with the good hearing I’ve been enjoying. I didn’t want to go beyond my home, and would really like to have just slept, as it was so tiring. What a relief to clap my mended processor onto my head and to enjoy good hearing again. It was a reminder (though none really needed) of how much I’ve gained, and also how dependent I am on the kit.
Hope – that I would benefit from a cochlear implant, that my life would change for the better, was an important factor in my taking the leap and saying yes when I was offered one. Hope kept me going through the tough bits, and I am full of hope for the future. Not everyone who is eligible for one will decide it’s right for them – and more on decision-making to follow in the next post – but it was absolutely the right choice for me, and I’m so thankful.
Thanks so much for sharing Sarah. It is just over six months since I got mine. It would have been helpful to know that wearing a hat does not affect the performance of the marvel since there is no longer an amplifier in the magnet housing. I find low frequencies a struggle if I don’t wear the crossover and I am not getting directional information or stereo. How are you coping with these and are you considering having the other day done? Best wishes, Chris Carter
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Hi Kristobelle, Ah yes – I have found a hat to be a helpful thing when it’s windy, as that seems to make hearing outside a bit tricky! Sorry you are struggling with low frequencies, but as you’re only six month from switch on there is (hopefully!) plenty of scope for improvement. By the crossover, do you mean a hearing aid in the other ear? I didn’t find mine all that helpful at first but after a few weeks I was definitely hearing much better when using both hearing and and CI. If that’s not what you meant, please do clarify. I’m not considering having a second CI. That wouldn’t be available to me on the NHS anyway, but right now I’m really happy with how my hearing is. Best wishes, Sarah
Hello, I have read your updates, including this one dated 10th November, with much interest. It sounds like your hearing (and therefore life) has improved dramatically – fantastic. I am stone deaf in 1 ear and have 10% hearing in the other, for which I use the hearing aid. I am currently being consulted to have a CI as I meet the criteria – I have had various types of hearing tests, an MRI scan and a CT scan and meetings with CI nurses. In December I am meeting the consultant who will have gathered all the data about me and advise accordingly.
At one of my recent meetings with a CI nurse she said it might be best if the CI goes on my working ear, not the deaf ear. The reason for this is because my deaf ear has not heard sounds for over 10 years and such it might have ‘shut down’. If I was to have the CI on the deaf ear, my brain might get confused with trying to process sound from a hearing aid in the 1 ear and sound from a CI in the other.
One thing I would like to ask you: you mention you have a CI in 1 ear and and hearing aid in the other. Is this correct? For your ear that you have had the CI on, what level of hearing did it have prior to the operation?
Thanks in advance,
Hello Harry, I’m glad you have found these blogs interesting and also happy for you that you are on the path to having a cochlear implant. I really hope you find it is beneficial. You’re right that I use a hearing aid in my non-implanted ear, though for some months it was important that I used the CI only, to allow my brain to adjust. I was in a different situation from you, as my hearing loss had been pretty similar in both ears until recent years, when hearing in my right ear started to deteriorate more rapidly. The right ear is the one that has been implanted. I have heard something along the lines you describe here – that hearing loss in one ear may be too profound and long-standing to make it a suitable site for the CI. But your implant team can no doubt explain more about that. I hope your implant team members are as helpful as mine have been! Oddly, I can’t remember what level of hearing I had…! I will see if I can dig out my audiograms. Very good luck with it all. Oh and you might be interested in a video I’ve made about making the decision to have the CI. I’ll be putting that in another post here very soon. Best wishes,