Something that struck me from the moment my name was put on the cochlear implant (CI) waiting list is that with hearing aids you travel alone, but with CIs there’s always company. At least, if you can get online there is. The pandemic has surely isolated many people unwilling or unable to interact via digital devices, who would have benefited from face-to-face patient groups, and I feel for them.
As soon as my eligibility for a CI was confirmed, I was able to join a Facebook group for people across five counties in the south-east who have got, or are waiting for, a cochlear implant. It’s a warm and supportive community, where experiences are shared and encouragement offered, and it’s a great source of information about all things CI-related. Posting a question on the Facebook page resolved my problem with connecting my CI to my phone within the hour – brilliant!
I connected with Alex some months back, a local person who landed on the CI waiting list at around the same time as me. Plans to meet up haven’t yet come off, but we’ve been chatting via our phones, and now Alex too has had her surgery. We plan to compare our experiences in a blog further down the line. Meanwhile, I’m so pleased that Alex and others (I’m giving a special wave here to Jane in Australia!) are finding my blog useful, particularly for sharing with family and friends. Two themes that have dominated recent conversation with Alex are the need for better information about what to expect after surgery and managing other people’s expectations of what our hearing will be like once we’ve got a cochlear implant.
“I’m worried my brain will fall out!”
Exchanging messages with Alex in the first days after her surgery have brought back all my own strange post-op experiences, and the questions I didn’t have answers to. Whilst Alex wasn’t really expecting to expel her brain, this was a great way to articulate her worries about wanting to equalise the pressure in her ear. A strange feeling of fullness in my ear, on the implanted side, was one of the most disconcerting things in the days after surgery, and there was no information about it on the very brief leaflet I was sent home with.
The Facebook CI community page is full of comments about post-op experiences and whether other people have had something similar. How much bruising is normal? Is it ok that my ear is numb? When can I…? Did any of you…? It would be so good if some people who have been through CI surgery were invited to contribute to the development of a much more detailed post-op information resource, addressing the things that we experience and worry about, not just the things that are important to clinicians. (Anyone wanting to read more about my post-op experiences, please check out the blogs I wrote in September.)
“Has it worked? Can you hear properly now?”
These are typical questions asked by well-meaning people, eager to know that the cochlear implant has delivered the longed-for outcomes of better hearing. And why should anyone know what it’s like, how long it takes to learn to hear in a very different way, and what sort of functional hearing we’ll end up with? Every person who receives a cochlear implant has to learn these things as they go along, and we can only do our best to take others along with us.
The long and winding road to better hearing
It’s now two months since my CI was switched on and there’s a mismatch between the progress I’m seeing and the progress that’s apparent to others. This is probably due to unrealistic expectations on their part but also because my new hearing is very much a work in progress. It was never going to happen all at once. Think of watching a potter at his wheel, or a carpenter at her bench. Long before the clay or wood become something we recognise, the potter and carpenter are working at changing the material under their hands, aware of each development towards what they hope for as a finished product. So it is with learning to hear with a CI.
If I sometimes feel impatient with the speed of change, I remind myself that the most gains are made over the first year, and especially the first six months. Not weeks. For the first three months, it’s best to avoid wearing a hearing aid (in the other ear) as much as possible to help the brain adjust to the CI. Some people find their hearing continues to improve over years. With each CI recipient in the UK being given the latest processor (the external bit) every five years, developments in this amazing technology also offer the prospect of future improvements.
A reminder from Emma, the speech and language therapist with whom I have sessions via video link, that the most progress is made in these early months, has made me renew my efforts with daily auditory training. I had eased off a bit, but just wearing the CI isn’t enough if I’m to make all the progress I can.
The first step is hearing, the second is listening
Given that I can now hear much, much quieter sounds than when I was using two hearing aids, it’s been a puzzle that don’t hear when one of my family addresses me from behind. I suspect I have forgotten how to listen and have some ‘deaf behaviours’ that I need to unlearn. I asked Emma about it and she concurred. She told me that she teaches the parents of deaf babies with CIs how to help their babies become alert to their voices when they want to get their attention, as they have previously relied on touch or visual cues. It’s a bit like that with adult CI recipients. Members of my household are now trying to get my attention by calling me in a more exaggerated way than normal – though not with a great deal of success so far!
As well as my brain adjusting to the electrical stimuli from the CI, I need to learn to listen again. Emma suggested listening to radio programmes and podcasts. It has been both amazing to find I can start to hear whole sentences, or large chunks of them (no lip-reading!), and also frustrating that I can’t seem to keep my attention on it for long. Partly, this is because it’s fatiguing, and I can expect to build stamina with practice. Clear-speaking presenters are easier to follow than interviewees, and programmes recorded in a studio better than interviews happening in the street, or in other places with background noise.
Coping with rapid (normal…) speech
Most people talk fast! As anyone who has tried to follow conversation in a language with which they have limited familiarity will know. Emma also suggested that I listen to YouTube audiobooks for people learning English, which are read more slowly and have accompanying text. I look away and just listen as much as I can, glancing at the text when I can’t make out a word or phrase.
Emma explained that speech perception can be measured in terms of words correctly heard per minute. This is known as speech tracking. She measured mine, reading a passage while shielding her mouth (so I didn’t lip read), stopping after every few words for me to say what I’d heard. Any errors and she’d repeat the phrase. The goal is 80 to 90 words per minute. My score is 34. Some way to go then, but Emma says this is as she’d expect at this stage.
Daily practice is recommended, helped by a family member who will recreate this exercise, reading from any book we choose. No need to be working out scores. Emma pointed out that this would have the bonus of giving them a better sense of what I can hear. Indeed, both daughters are helping with this exercise and are surprised and impressed that I can repeat most of what they read aloud. They are reading slowly and clearly, which is what I need at this point. But I expect to get better and better, and I really hope that by next autumn I’ll be hearing speech at a more normal pace. Astonishing to think that’s a possibility.
I’m also working away at exercises on the Hearoes app, a bit irritated by my difficulties with distinguishing certain sounds, both consonants and vowels, with M/N, D/G (from male voices) and some vowel sounds in the middle of words (such as sip versus sup) particularly tripping me up. But Emma said that if I tell my audiologist which sounds are causing me problems, when I return to see her in January, she may be able to help by making programme adjustments. Isn’t this technology just amazing?
Brilliant blog once again Sarah
Thank you Brian!
Hi Sarah, A wave back to you from Jane in Australia! Great to see your latest and I always pick up useful tips from you . I’m now at four weeks activation and agree with you 200% about other people’s expectations and the lack of realistic information for CI recipients. Sooo frustrating trying to explain what I can and still can’t hear and not sound a bit self-pitying. Those videos of babies’ wide-eyed expressions when they first hear “sounds” don’t really do we adults any favours! Congratulations on your achievements so far – I know how much work goes into it! Cheers, Jane
Thanks Jane, lovely to hear from you. Yes those videos! Just so far removed from the experiences of many of us adult CI recipients. Wishing you well with your rehab.
I have only had my processor a week and am doing ok. I am trying to rely on it and don’t use my aid in the other ear, fine around the house but not so outside,but if you don’t try you won’t succeed. My advise is to think back to what it was like the first day and already I have come a long way.
That’s good advice! Best wishes for your hearing rehabilitation.
Great information about benefits of cochlear implants. it’s really helpful for the reader.