New ears please: week 1 with a cochlear implant
I wasn’t really planning to write about this experience. Not because I’m embarrassed about it: I just felt that there were enough great bloggers writing about their own cochlear implant journeys.
But it has been such a strange experience and I’ve been asked so many questions about it that it feels worth the time to try and write things down to explain a little bit of the process for others and to give me something to look back on in a few months.
I’ve not really written about this much online, but anyone who knows me personally will know that in medical terms, I’m severely to profoundly deaf.
Those that know me well will also know that even though I’ve worn hearing aids virtually from birth, my hearing has been getting progressively worse in the 10 years since I turned 18. Despite wearing 2 of the most advanced (and powerful) hearing aids available, I reached to the point where I was totally unable to hear certain sound frequencies.
I’ve known about cochlear implants for a long time, but I was always very wary about getting one: I thought I knew they involved major surgery; that they don’t necessarily work out for all people; that they replace your ‘natural’ hearing with electronically generated ‘sound’ and that they pretty much destroy all your ‘residual hearing’. I wanted to leave it as long as possible before giving up on my hearing aids.
I was getting by. Being self-employed and in control of how I work definitely makes that a lot easier.
I didn’t expect to end up in this position a few weeks ago, having gone through the assessment process with the (fantastic) implant team at Guy’s & St. Thomas’:
The pretty amazing bandage makes the 3 hour operation seem a lot worse than it actually was.
There’s obviously a lot of skill and training that goes into lifting up someone’s ear and inserting an electronic device underneath it. But what most people probably don’t realise is that from the patient’s point of view, the operation itself is probably the fastest parts of the cochlear implant journey. With a little luck, all you have to do is lie in a bed and then wake up a few hours later.
Here’s a fun photo from the morning after the surgery when the bandage was removed.
It looks horrible but it honestly wasn’t that bad. I was lucky enough to miss out on the main surgical risks (nerve paralysis; meningitis and general anaesthetic risks) as well as some of the stranger, but more minor ones like black eyes and facial swelling that some people seemed to have suffered.
In the month I was recovering, I did get to enjoy fun side effects such as:
- Being able to feel the gooey blood sensation behind my eardrum. That gave way to the sensation of having air trapped in the ear for a few weeks.
- Not being able to get the wound or dressing wet for a week after the operation. No showers, and you have to leave the house looking like a zombie/unlikely fan of Vincent van Gogh.
- And more frustrating: only being able to use 1 hearing aid (in the opposite ear) while recovering.
I had surprisingly little pain and only needed a paracetamol a couple of times in the days after the operation.
The more exciting part came this week, about 4 weeks after the surgery itself…
Most people’s perception of cochlear implants is from videos like this one:
But for the vast majority of people, the switch on is nothing like that one. A cochlear implant is totally unlike a hearing aid in that it doesn’t even amplify sound: instead of sending noises through your ear canal, you now hear via electrical impulses being sent into the side of your head and then routed to your brain.
After the switch-on, you have to completely re-learn how to hear, a little like learning a totally new language that works through a puzzling series of electrical pulses, rather than sounds.
“It’s a bit like being handed a key to a Porsche and not knowing how to drive. The brain has access to all this sound but it has to really learn to make sense of it.” Anita Grover
That takes time. And I was pretty prepared for that, but it’s something that the majority of people (quite understandably) don’t realise. It definitely leads to a lot of people asking you “can you hear better now?” 1 day after switch-on and needing to explain to them why that’s not realistic.
Day 1: Chipmunks
My first day was actually a bit better than I expected it to be, but I think only because I set myself really low expectations.
I have an Advanced Bionics implant and processor — mine’s a Naida CI.
Almost every noise sounds like a tinkling bell, maybe a little like tinnitus. It’s definitely not an immediate improvement on hearing aids, but it’s not terrible either, and thankfully I didn’t get crazy eye twitches or facial spasms like I’ve heard some people had.
Some people’s voices are okay. I can have a conversation with the audiologist when she’s switching it on (though I’m heavily dependent on lipreading). The sound is a bit garbled and robotic, a little like a chipmunk, and her accent isn’t clear at all.
Heading outside for a few minutes after switch-on, traffic noises aren’t a big deal — nothing is uncomfortably loud, although the power of the implant is temporarily set to be pretty low so it’s not too overwhelming.
There’s a lot of tinkling sounds although it’s very hard to work out what they correspond with. I can tell when a bus goes past, but otherwise, nothing really matches up with its ‘real’ sound.
Even when I know what a sound should be, it takes a lot of focus to try and mentally map it to the right sound in my brain. Washing my hands just sounds like a peal of high-pitched bells, even though I know water doesn’t sound like this. If I focus really hard, I can mentally transform that ringing sound into something closer to how it should be.
The first sound that actually sounds ‘normal’ is a paper folder being rustled. That’s the first sound in 2 hours which doesn’t sound garbled or tinkling. It’s great!
I try talking to family in the evening. It’s just about possible to have a conversation with repetition and a lot of lip reading. That’s a lot more than I expected to get from day 1, so I’m really, really pleased with that. I know this is a lot better than a lot of people manage at this point.
Day 2: Ringing
Everything is still ringing, ringing, ringing. And then ringing a little more.
It’s more tiring today. I’m hearing a lot of noise but I’m not at the point where I’m able to actually make out any new sounds. It’s a battle just to try and regain some of the basic hearing I had before.
Everything feels fine though — I went back to work. Which is to say, I walked into the other room and opened my laptop in the morning. No video calls with the team for at least a week or two when I can use headphones again.
Voices are very frustrating. It’s now really hard to follow quieter voices, even ones I know really well. This would have been relatively simple even with 1 hearing aid — it’s a quiet environment and only 1 person is talking. But it’s often taking 3 more attempts to understand simple sentences. I’m really trying not to give up on this because I know that the more I work at it, the better it will get.
On the other hand, some small surprises: the sound of a car’s turning indicators is very clear and noticeable. In the kitchen, dishes and cutlery clanking also sound the way they should do.
Day 3: New sounds!
I’m picking up more environmental sounds. Still nothing I wouldn’t have been able to hear before. But it’s great that this thing is definitely working and that some sounds (especially low ones) are starting to become identifiable, like footsteps, the front door, aeroplanes, gravel crunching and cars pulling up outside.
I’m determined to try and improve my ability to pick out voices but it’s still really tough. Watching a lot of TV with subtitles helps — especially trashy daytime TV. I hate this kind of stuff usually, but it’s really helpful to be able to practice with a lot of ‘real’ voices and speech and follow along with the subtitles. I can just about make out the actors’ accents, which is great too.
Today was definitely more tiring and I even put my other hearing aid in for 5 minutes to have a conversation with my wife at the end of the day because it was so hard to manage without that. The 2 different types of ‘sound’ sounded completely bizarre together: that’s going to be fun to re-adjust to in a few weeks when I start wearing my heading aid alongside the implant.
Day 4+5: The birds and the bells
Okay, this is getting cool now. I definitely don’t have normal sound: it’s still really disconcerting and a little dizzying and I’m still getting that ringing/jingling sound for most new noises.
But if I focus on a specific thing (like a bird), I can pick it out and follow it. And identifiable sounds are just about starting to pop out from that jangling background noise. I don’t hear them every time, but some of them are really obvious. Others, like my wife calling my name from 3 meters away, take several attempts before I hear it.
I tried listening to music, mainly to see how bad it would sound. I expected this electronic music to be terrible but it’s surprisingly okay. The beat is clear enough and it doesn’t sound as bad as I thought it would. No chance of identifying the lyrics just from the sound of the track yet and I’m not sure I could listen to it for too long.
I’m really trying to work on recognising speech. The manufacturer of my implant has a website with training exercises on it. I’ve spent an hour or so working through those and I’m quite surprised that I can lipread and follow the speakers if I concentrate hard, so voices are obviously starting to come back a little.
Going out to dinner in a pretty noisy restaurant, I can follow and participate in a conversation with 3 other people. That’s pretty surprising: my hearing is all over the place for some sounds, but in this situation I’m amazed that I can actually hear this much, so fast. I won’t get my proper ‘mapping’ session with the full programmes until next week, so this is great considering how limited the setup on the implant is right now.
Some of the new things I heard today, but wouldn’t have picked up with 2 hearing aids previously:
- Birds are starting to sound very clear. It’s been a long time (decades?) since I last heard birds outside, so that’s pretty cool (and might also get annoying!)
- Probably the coolest thing so far: hearing a van star its engine from about 200 metres behind me.
- Some sounds come across very clearly, like the sound of a pot being stirred with a metal spoon from the other side of the house.
- Sitting outside a pub, I can hear quiet background music coming from inside. No chance of making out what the actual music is, obviously.
- Someone’s watching a video on their phone on the other side of the room, behind me. I can hear a noise and then recognise when it starts and stops.
Those probably sound like really basic things, but I’m really happy to have reached this point so quickly. I think this was the most intense day: I’ve switched off the processor a couple of times for a minute or two just to take a break and it’s a relief to be able to remove it at the end of the day.
It’s now pretty much possible to track people’s speech and lipread them, even in noisy situations. So that makes things much less stressful. Even if I get no improvement from this point onwards (unlikely, but possible, I guess) I’ll have at least retained my ability to have a conversation with people if I’m focused on them.
It’s still really tough to pick out specific sounds. I’ve probably said “what’s that sound… that one… no, wait a sec… that one there!” about a hundred times in the last few days. But unless I do it, there’s no way to ‘translate’ a jingling sound into a more familiar one.
It’s tiring to push yourself to listen to a lot of sounds, but I tried again in another busy restaurant. Also pretty doable. I’d have been okay in this situation when I had 2 hearing aids, so things are getting to the point where speech (even in noise) looks like being better than it has been in the last few years with very high-powered hearing aids.
New sounds today included hearing slurping noises as animals eat food — not something I can ever remember hearing. I can also hear some ‘closed set’ sentences: I used to be able to use a sat-nav but I haven’t in years as my hearing declined. But sitting in the back of a car, I can definitely make out some of the directions, even with music playing.
Those birds outside are really noisy. And who knew so many planes flew over this house? Not me, anyway!
I’ll be heading back to the hospital tomorrow to have another hearing assessment, a speech therapy session and my first proper ‘mapping’. I’m actually really looking forward to that: I’m still not expecting much in terms of immediate improvement but at least I’ll hopefully be able to use headphones again and the levels on the little computer I’m wearing on my ear will be tweaked a bit.
Other than getting slightly better with picking up speech, no huge changes to report today.
Let’s see how things work out tomorrow!