I’ve been approved for a cochlear implant! It’s Day 1 and I’m on the list! In this blog, I look back at how I got here, and reflect on the beginnings of this new adventure.
Today feels momentous, for two reasons. In England, Covid restrictions have eased to allow up to six people or two households to meet outdoors, including in private gardens. And I have been approved for a cochlear implant. As of today, people who don’t live here can come into our garden, and I am on The List.
A few months ago, I had no thoughts that this territory might be mine. That changed in November 2020 when my first audiogram for five years laid bare the deterioration that was showing in my increasing difficulties in hearing with my aids. I had moved into the Severe category and the hearing in my right ear had headed sharply south, lying moribund in the wastelands of Profound deafness. “You might be a candidate for a cochlear implant”, I’m told. Really? Oh wow! I had no idea that the criteria had broadened from babies, children and Very Deaf People (was that ever the case?) to include people like me (deaf-but-could-be-worse-and-also-getting-on-a-bit). I left with a promise of referral to the implant team. I glimpsed something amazing in that possibility and headed home, not for the first time, full of gratitude for the healthcare available to me.
“Men wear long trousers…” Assessing my speech recognition
The referral happened at speed and in February 2021 I was back in the department for a whole morning of assessments with members of the cochlear implant team. There was the usual audiogram (long silences between beeps and me wondering did I hear a beep then or not?), but for the first time my listening skills and speech perception were assessed. I listened to sentences, repeating what I heard, and I did this with both hearing aids, with one at a time, with lip reading and without. The words were read by male and female voices on a recording and the Speech and Language Therapist (SLT) doing the test. I then did something similar, listening to single words. I was asked to repeat any sounds I heard, even if I couldn’t get the whole word.
The difference between the hearing in each of my ears isn’t noticeable to me in everyday life, wearing two aids all my waking hours, but it was very obvious testing one ear at a time. One very incongruous thing. There I was, discussing state-of-the-art technology with four professional women, and the sentences I had to repeat appeared to have come straight out of 1950s Ladybird books. “Men wear long trousers.” “The woman cleaned the house.” “The clever girls read their books.” I hope that changes soon! How about “The woman performed cochlear implant surgery/developed a new implant processor”…?
I talked with the SLT and two students (attending via zoom) about the strategies I use to aid communication and indeed other kinds of strategies – such as avoiding some situations where I know my deafness will cause me to struggle. I also completed a ‘hearing handicap questionnaire’, which asks about the impact of hearing loss on everyday life. Over the years, as I’ve answered questions about behaviours and preferences (the ‘What’s Your Personality Type?’ kind of thing), I’ve wondered about the influence of my hearing loss. I attribute to it things like my tendency to remain on the edge of a group of people, but maybe I’m just like that! Maybe I’m not quite the extrovert, woman-at-the-heart-of-the-action, I imagine I am, or think I would be if I could only hear better. Perhaps decades of declining hearing have inexorably shaped me so that there is no separation of these things. I wonder what, then, will I be revealed as (or perhaps become?), should a cochlear implant really give me much better hearing than I have now.
I sit in a room, wired up to a computer, which tracks my auditory nerve function while I sit quietly and read. I’m slightly distracted by the posters. One shows a cut-through diagram of the ear and associated bits, with interventions mapped onto it: hearing aids, bone-anchored hearing aids, cochlear implant, auditory brain stem implant… What?! Brain stem? Not an organ I imagined anyone venturing to mess with (sorry, surgeons, I’m sure you don’t ‘mess with it’!). Another carries a plea to implant users to look after them, giving equivalent costs: the implant costs around the same as a small car, the processor a laptop etc. There’s a poster stating how much one’s risk of dementia increases with untreated hearing loss, and indeed I fear the future impact of my own declining hearing on my cognitive function – a strong motivation for wanting to give it all the help I can get. One more poster is extraordinary for its terrible design, with tiny font and poor colour contrast. I resist the temptation to photograph it to share with my colleague.
Astonishing kit that will ‘see me out’!
I was shown the miraculous kit that constitutes a cochlear implant. It wasn’t the moment for in-depth questioning but I did ask how long they last. “It would see you out!” I was told. Gosh, well that made me feel old! A phrase last heard from the lips of my grandmother I think, no doubt about the purchase of a quality piece of furniture. From ear to eternity.
The upshot of the assessments was that I would probably benefit from an implant and met the criteria for NHS provision of one, but only just. The following week, I was due to get new hearing aids, so it was arranged that I would be reviewed a month later. I went home clutching brochures from two implant companies and one from the National Association of Cochlear Implant Users. I didn’t look at them until it was almost time for my review, as perhaps I wouldn’t be offered one anyway…
I’m on the list!
A month on, then, I’m back to see the head of the implant programme. We repeat the single word speech discrimination tests, with both aids then one at a time. With the right ear only, I lose most of the consonants, mostly just getting vowel sounds in the middle of words. I suppose that some of the words I think I hear are unlikely to appear in such a list (‘fag’, ‘noose’, ‘debt’) but they are my best guesses. Every other word seems to be ‘rule’, but no doubt isn’t. It’s a test where you never discover the correct answers. It confirms what I thought, that the new aids haven’t improved my speech recognition at all. I have an audiology appointment in few weeks for fine tuning, which I hope will improve their tendency to make a noise and to turn ‘s’ into ‘sh’, but my assessor feels any significant improvement unlikely. So, she says, I am happy to put you on the waiting list for an implant. Day 1 is today and surgery likely to take place at the end of the year (and I’m momentarily distracted by the thought that it also takes place at the end of the ear…). Wow! I leave with a spring in my step at the new possibilities this heralds.
Sharing the news
I think of my lovely mum, who died almost a year ago, and wish I could tell her. She found hearing loss so compromising and was sad that I had it too. I feel she would have grabbed the chance, had a cochlear implant been available to her, and would have been so happy for me. My family, friends and colleagues are pleased for me and so are the good people of Twitter, with whom I share the news. One of my sisters has Questions, as does my husband. Sensible questions that I haven’t yet thought of, like “will the improved hearing you get with implants last more-or-less indefinitely?” No idea. I must make a list.
I’m a well-educated woman and a former nurse working for Cochrane, writing about health evidence. I know about evidence hierarchies, the importance of asking the right questions, evaluating data and so on. But my response to being offered an implant is “Oh-wow-that’s-amazing-thank-you-so-much-yes-please-when-can-I-have-it?” I will, of course, look for relevant research and find out as much as I can about implant technology. But I find that what I want most of all, or most immediately, is to hear about other people’s experiences. Anecdote…that stuff that’s in the naughty corner of the evidence room. But this is a very common part of decision-making, isn’t it? Hearing about other people’s experiences. I wouldn’t make a treatment decision on the basis of so-and-so’s auntie having found it really helped her, but I still want to hear about it! At my appointment I was given information about a Facebook group for people in this area who are waiting for an implant or have had one, and I waste no time in requesting to join.
There is so much I want to find out. This is Day 1. There’s much more to come.