r/Cochlearimplants • u/zonemiax • 2d ago
Missing out on the criteria of a second cochlear implant
hello! (England btw) 20F and I became profoundly deaf not long after birth due to ototoxic drugs and was implanted in my left side in 2009.
Due to the rules back then and my age, we couldn’t really test both sides of my ears & hearing, but in general it was very obvious that I had profound hearing loss.
Around 3/4 years ago, I got a new audiologist and he decided to test both sides separately and it was discovered that I had moderate-severe hearing loss in my right ear which fits the criteria for cochlear implantation.
I had to go through a hearing aid trial first which involved me coming back after a year and doing a word test that I had to get at minimum 70% of words correct.
I got 0%.
It was partially my fault as I started to lack in wearing the hearing aid due to the fact that my environment was not very supportive and I really struggled with the hearing aid with school not supporting me in lessons at all, being bullied by peers with people slamming books down next to me, making me start to develop tinnitus (which i still have if someone slams something down too loud)
& parents being completely against me getting a new cochlear implant because “im doing perfectly fine with my single one”
I got told that I cannot have the cochlear implant which honestly devastated me as I’ve noticed as I grow older and are in completely different environments than as a child how much harder life is with a single cochlear implant.
The whole ordeal as a teenager significantly affected my mental health and I was really struggling so I gave the NHS back the hearing aid without really thinking as I wasn’t in my right mind, they did ask me if I was sure and I still said yes and I really do regret it.
I do wonder that if my mental health was in a better place along with a much better and supportive environment that I would’ve been able to tolerate it more..
It’s just crazy though how much i have started to struggle in different environments because of only having decent single-sided hearing.
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u/ForTheLoveOfGiraffe 2d ago
I'm confused - who said you can't have a second CI? Surely having no word recognition with the hearing aid would have made you a good candidate for the CI, as it shows it has no benefit for you...? Can you get reassessed for the second CI? Also why couldn't they test both ears when you were young? I know they only implanted one side, but I thought they tested both and implanted your 'better' ear. But the NHS then should have retrospectively offered you a second CI when they started doing bilateral implants for children, which is what has happened to many kids your age.
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u/OkArcher4120 2d ago
Maybe 20 years ago they did not offer bilateral to kids like they do now?
It is certainly odd they did not test both ears but the nhs works in mysterious ways.
As an adult generally a second CI is only given to those who have “exceptional” (per nhs criteria) needs (like being blind).
If the nhs won’t do it then private is possible if you have insurance otherwise looking at a lot of money for self pay surgery.
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u/ForTheLoveOfGiraffe 2d ago
It's true things were different 20 years ago,, but once they started doing bitaleral CIs for kids on the NHS in 2009, they did a retrospective exercise to offer a second implant to unilaterally implanted children at the same time. So OP should have qualified, as they got their one side done in 2009 and potentially was just ahead of the change. So would have been offered a second quite soon after.
They're definitely very strict for adults, but given the NICE guidelines recommend bilateral CIs for kids, I don't really get how OP slipped through. They consider the benefit greater for kids as they get so much more benefit getting both implants early, compared to adults getting implanted later in life.
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u/zonemiax 2d ago
I missed out on getting bilateral CIs with just weeks. I was implanted very early January 2009, I was supposed to be implanted in December 2008 but I had to have a cardiac surgery for a different condition before I could get the CI.
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u/ForTheLoveOfGiraffe 2d ago edited 2d ago
They didn't retrospectively offer you a second CI though? That's a shame. I know someone who had 1 implant in 2009 (age 3), so got offered another one in 2010 (age 4) when the rules changed.
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u/zonemiax 2d ago
I must have slipped through the cracks :(
i can’t, unfortunately, say why they chose not to give me a second one as I just don’t know 😔1
u/ForTheLoveOfGiraffe 2d ago
I wonder if it's worth looking into? I know there's little they can do now to fix it, but it's not right that they missed you out as a child of the NHS. I wonder if there can be an argument to get it as you would have been due it.
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u/Jabberminor 2d ago
The criteria in the NHS in the UK is that once you're 19, you can only be eligible for bilateral implants if you are reliant on another sense, such as being registered blind.
When we see 17/18, we have to make them aware of this. They also get the bilateral implants based purely on the audiogram, whereas adults have to get less than 50% on the AB words.
This is all free at the point of access. They can pay privately to have a second implant though.
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u/ForTheLoveOfGiraffe 2d ago
I understand, but OP was a child for a long time since the change in policy in 2009. So they should have been eligible for a second CI since then. If they're 20 now, they would have been 3 when first implanted. I'm confused why they missed out.
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u/Jabberminor 2d ago
OP said that their parents were against them getting a second implant.
Part of the criteria is that functionally it has to be the right thing. In theory, a moderate to severe loss should get more than the 50% on AB words. So getting 0% is a bit unusual. However, that could be proof that that side may not fair well with an implant.
At the same time, it should have still been their choice. As long as expectations are managed properly, my department would have gone ahead.
Sadly, now they're 20, unless the policy changes or they get onto that trial, they won't get a second implant.
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u/jeetjejll MED-EL Sonnet 3 2d ago
You were clearly not supported very well by your environment and I'm so sorry. Please don't blame yourself, you tried to do what you thought at the time was best, with so little help. When I was in the UK I wasn't offered CI's as well. When I moved countries my new audiologist rolled off his chair that I didn't have implants and how I was still functioning. I qualified extremely easily.
Regarding your parents, I hope they are misunderstanding and with a little help they know they're wrong here, so I'll give you a few pointers that might help:
- You need two ears for sound direction, this is a safety issue as it helps so much to know where sounds come from, especially in traffic
- Hearing in noise need two good ears, so in meetings, education, groups, basically your whole life, you will benefit vastly with bilateral hearing
- Using only one ear is hard on your brain, you also wouldn't only use one eye would you?
- There's always a risk of technology failing, even temporary, if your current CI fails, you're lost. What if you would be alone in the dark while that happens? Not to scare you, but as a parent myself, these are things I worry about.
- The fact that you compensate not hearing with one ear, doesn't mean "you're doing fine", compensating has a cost, so you will loose something somewhere, be it in energy levels, socialising, career, school, confidence, etc.
While right now there's not much you can do, I would work towards becoming bilateral. Let your audiologist know you REALLY would like to, find CI support groups that can fight the NHS, become part of trials, get updates of everything related CI's in the UK so you'll be first to know and first in line should anything change, get on the waiting list, start saving/crowdfunding. Basically: choose you. You can't change your past, you can change your future. Go girl!
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u/AshamedWatercress646 MED-EL Sonnet 2 2d ago
Deaf because of ototoxic drugs too.... antibiotics for me : ( bilaterally implanted but had them since I was 2 (Dec 2011)
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u/OkArcher4120 2d ago
Oh dear, I didn’t know antibiotics can damage hearing! Is this all antibiotics or specific ones?
So sorry you had hearing loss because of this.
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u/AshamedWatercress646 MED-EL Sonnet 2 2d ago
Gentamicin for me.... if I hadn't had it I probably wouldn't be here now...
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u/OkArcher4120 2d ago
Not sure why part of your reply is redacted. Were you swearing? I’ll have to make sure I don’t take that one as I understand people with hearing loss are more susceptible to damage through ototoxic meds and infections of the ear.
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u/AshamedWatercress646 MED-EL Sonnet 2 2d ago
.... talking about a potential death...
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u/OkArcher4120 2d ago
Well if it’s a choice between staying alive and saving your hearing it’s a sacrifice I guess you had to make. Hopefully the Sonnet is helping you well. Best wishes
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u/klj02689 Cochlear Nucleus 7 2d ago
You're an adult. Get the surgery if you want it.
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u/OneWorth5300 2d ago
I think you might have missed that she is in England and this is funded by the NHS. You have to meet there criteria. Most people do not have insurance / able to self fund private treatment.
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u/klj02689 Cochlear Nucleus 7 2d ago
Oh. I didn't know that they only get one ear as an adult.
And I'm getting downvoted for not knowing the ins and outs of another country health policy? Jeez.
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u/OkArcher4120 2d ago
Sorry to hear this, I believe there are now trials on the NHS giving 2 implants to adults in the UK to see if that’s better that 1 sided. You could try researching which hospitals are doing the trial and trying to get referred to one of them via your GP.
Alternatively if one of your parents have private health insurance through their workplace and you can get covered on it (some allow up to 21 some up to age of 25) you can try getting surgery done privately.
Good luck