In this blog, I reflect on my preparation for meeting a surgeon to discuss cochlear implant surgery and rehabilitation, and what came of our meeting.
It’s very strange attending hospital appointments during the COVID-19 pandemic. Only those that really have to be in the building are there, so there are far fewer people around than pre-pandemic and all masked up, of course. I arrive in the ENT waiting area and sit, as usual, on full alert for anyone who might be calling my name. It turns out that I’m looking in the wrong direction but the implant coordinator who saw me last week knows to come and find me. She ushers me into a room where the surgeon Mr R and a medical student are waiting. It’s a long time since I’ve been in a room with three people I don’t live with and I blurt out that this feels a bit odd!
Mr R makes me feel like he has all the time I need for this conversation, but I can’t quite kick the habit of going into any healthcare appointment with a sense urgency to get the thing done and make way for someone else. I do relax into it though, and it probably helps that we’ve met before in a different context, through my involvement in a pilot project to have D/deaf people in place of actors for the ENT element of medical students’ ‘OSCE’ exams.
What might I want to find out?
I’d tried to prepare a bit for this meeting by asking my immediate family to suggest questions I might ask. Three of the four of us work in healthcare and perhaps this is why the suggestions were all ridiculous, and made us laugh (Can you get Google translate on your cochlear implant? Can you put fridge magnets on it? Etc…) Clearly I’d have to turn to Twitter for some sensible suggestions.
People on Twitter suggested some great questions. Some I’d thought of and some I hadn’t. I especially liked “what question haven’t I asked you that you’d want to know about this surgery/device?” I’ll list them all as, while I didn’t ask all these, it may help others to think about what they might want to find out.
- What are the risks of this operation?
- Is it painful?
- Are there complications that could result in more surgery/removal?
- What can I do to reduce the likelihood of complications?
- What is your/your team’s/your centre’s complication rate?
- Is it reversible?
- What can I expect in the immediate post-op period?
- What is the best (hearing) outcome I can hope for?
- Is it easy to adapt to?
- I’ve read that voices can sound strange – does this change over time?
Living with a cochlear implant
- How do I look after it?
- Are there activities having a CI could make harder?
- Are there everyday things that could interfere with the implant’s function?
- Does it connect to devices like smartphones?
- Does it interfere with wearing a bike helmet?
- How does it function in windy weather (noisy)?
- What if I get an ear infection?
- Long-term, will my hearing on the implanted side stay the same?
What matters most to me
This is a critical element of any decision about a treatment.
I ask about risks. What I’m most anxious about are the possibilities of balance disturbance and tinnitus, neither of which I’ve had before and I dread them, perhaps because I live with someone with both and I’ve seen how miserable they can be. I’m told these can be short-term effects of the operation, but I may not get either and they should resolve in days if I do. I’ve read about the small risk of facial nerve injury and Mr R confirms that this happens to about 1 in 1000 people, and that the nerve is monitored during surgery to minimise the risk. He mentions the more common possibility of taste disturbance on one side of the tongue, which should resolve in weeks or months. Antibiotics cover infection risk straight after surgery and I’m asked to arrange to have a meningitis vaccination. Of course, there are also risks that go with any general anaesthetic (this is a two to three hour operation under general – when I first looked it up I’d hoped it might be under local!) but we’re not discussing that now.
What’s the best I can expect?
Then I want to know what is the best outcome I can expect in terms of my hearing. There are unknowns about this – as with anyone who is going to have a cochlear implant. What they can say is that they think I would benefit, but it’s made clear that this is a choice and that the choice, of course, is mine. The health professionals I’ve spoken to have all been very measured about what’s possible and keen to ensure my expectations are realistic. I’m still going to have hearing loss. I may need to supplement my hearing with lip-reading and so on. But I might be able to hear on the phone – I can’t remember how many years it is since I last did that. Hearing on the phone isn’t a key priority for me (though I might find I’m glad of it), but it’s a marker of how much functional hearing I might regain. Privately, I wonder if I might be able to sing in tune again, but I don’t ask. That would just be a bonus extra!
And if I don’t have a cochlear implant?
After decades of similar hearing in both ears, my right ear is now much worse. Mr R points out that this decline would be likely to continue and that I may well see a decline in my left ear too. Oh… I hadn’t thought about that. The bottom line seems to be that I have reached the limit of what hearing aids can do for me, and my hearing will keep getting worse. But a cochlear implant offers me the chance of improving my hearing – and with a degree of future-proofing. I ask whether my hearing on the implanted side will stay the same long-term and am surprised to be told that some people find it actually improves, as they continue to adjust to the implant. I also stand to benefit from from future advances in CI technology.
I don’t have to give my decision there and then, but I do. Since it was first mentioned as a possibility, I’ve felt this was an amazing opportunity that I should grab with both hands. What I’ve heard today has confirmed this decision for me. I am ON for a cochlear implant.
Choosing a cochlear implant
At least two weeks before surgery, I need to let them know which cochlear implant I’d like to have. I ask Mr R if there are any considerations, from his perspective. He says that either would be equally suitable for me and that they are comparable. I’m interested to hear that they have debated whether they should offer a choice, but that offering rival devices seems to have a healthy influence on the implant developers. One will bring out a new feature and the other will swiftly catch up.
It seems I’m going to have to do my homework on this sooner than expected. Last week, the implant coordinator warned me that due to the pandemic-related backlog of postponed operations, I would be likely to have surgery towards the end of the year. But Mr R says it could be in the next two to three months! I know I should be delighted but I am a bit scared of it all really and I hear myself saying, feebly, “I don’t mind waiting!”
I had imagined having a really sociable summer and autumn, then hunkering down in the winter and using this quieter time to have surgery, recover and rehabilitate. So a summer date changes things. The things I really want to do are to see my family, beyond my household, from whom I have long been separated due to COVID-19 restrictions, and to be able to go ahead with a long-awaited memorial service and family gathering for my mum, who died in April 2020 and for whom we were unable to have a funeral. Mr R reassures me that a surgery date can be pushed further on if it isn’t suitable. I only realise on the way home that I didn’t think to ask for how long I’ll effectively be more disabled than now, and when I might start to hear better. I have been given an email address for sending any further questions I think of, so that’s helpful, and I will ask this.
It’s been a useful meeting. My final task before leaving the department is to complete a form indicating whether or not I have, or have ever had, any of a very long list of health conditions, or previous operations, and any current medication. I feel very fortunate to be able to tick ‘no’ and ‘none’ for everything and again so grateful that I am being offered an implant.
Now for the homework on which implant to choose.
Featured image: Deafness creates walls by Emily Chapman. My daughter created this piece of textile art, using some of the words I had used to describe my experiences of deafness. The original is set within a deep box.
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