I have a cochlear implant AMA

[AdmiralJaneway]

I’ve been deaf since birth (am now in my 40s) and have had a cochlear implant for eight years.

Brilliant timing op. My friend just had her pre-op for hers and is really scared. How do I reassure her? Was it worth doing? Tips for newbies? Thanks for this thread

Hi OP.
Was there a magic moment when they switched it on that you could suddenly hear? Or was it not like you see in those viral videos?
Do you have to take it out to shower?
What do you wish hearing people could do to better the daily life of non hearing people?

Hello! My DD is fine and has bilateral CIs! She’s doing very well with them, but there are of course difficulties.

How is your CI compared to a HA (if you used them before)?
Do you use bsl?
What are the biggest challenges with communication for you?
How tiring is listening with a CI?

*5, not fine!

Brilliant timing op. My friend just had her pre-op for hers and is really scared. How do I reassure her? Was it worth doing? Tips for newbies? Thanks for this thread

It’s a difficult one for reassurance because the operation itself often removes what little hearing you have in that ear. But the reward is usually more than ample - I can now hear birds singing, and leaves rustling. However, I have been deaf so long that I doubt I’ll ever listen to the radio clearly. That said I do catch the odd sentence every now and then AND my ability to lip read without sound is now abysmal!!

My best tip is not to panic if it doesn’t sound normal at first - I had beeps and squeaks in my ear for about a month before my brain decided that actually it does now make sense!

If you can actively practice listening e.g following along to an audio book with a print book then that will help.

Hello! My 4 year old has bi lateral CIs. Some people report sounds as 'robotic', is this the case for you?

I would love to know how my son experiences sound!

Was there a magic moment when they switched it on that you could suddenly hear Or was it not like you see in those viral videos?
Do you have to take it out to shower?
What do you wish hearing people could do to better the daily life of non hearing people?

Hi, no - I did not have what is often called a “rockstar switch on” - I had about a month of beeps and squeaks before my brain decided that actually this does make sense!! I was actually on the point of despair that it wasn’t working when I realised that voices sounded normal (the brain is truly amazing!) Those videos are not a true picture of everyone’s experience.

I remove the external part (the bit that you see on the ear) to shower - the internal part is under the skin and so cannot be removed. I do have a box to put the external part in and clip to my swimsuit for swimming but it’s rather a faff so I don’t usually bother.

I think that the best thing the others can do is to have patience and ask what people need to communicate. I don’t usually need much - just to see faces in clear light and that people speak normally. (Over enunciating isn’t helpful). Masks are the bane of my life at the moment but most people are happy to briefly remove them.

How is your CI compared to a HA (if you used them before)?
Do you use bsl?
What are the biggest challenges with communication for you?
How tiring is listening with a CI?

Hi - having had my CI (left ear) for eight years I can confirm that it is far and away better than a HA. However I still rely on the HA (right ear) to give me the deeper bass sounds as the CI isn’t so good at that. I now tell my Dad to turn the telly down!!

I do not use BSL as a communication preference, I do have my level two certificate but like any language you need to practice it or lose it.

The biggest communication challenge for me is when batteries go flat!! And also the current challenge is masks as I use lip reading to support my understanding as I am not able to rely solely on my CI as I have been deaf for too long to have a strong auditory memory.

The first few months were very tiring indeed but now it does not bother me at all. The ears and brain are quite used to it now!!

I wish your five year old all the best with her CIs!!

Hello! My 4 year old has bi lateral CIs. Some people report sounds as 'robotic', is this the case for you?

I would love to know how my son experiences sound!

Hi - they do not sound robotic to me, but everyone’s experience will be different. The CI is fab but cannot truly replace the incredible ability of the ear to hear all those sounds so for those that have not been deaf as long as me there may be some sounds that are robotic.

Good luck to your four year old and his CIs!!

Thanks so much for answering OP. I feel like the nonhearing community (apologies if this is not an appropriate term), which make up an astounding percentage if the global race, are so poorly catered for in the wider community.
My sons' nursery teach basic BSL which I feel is a positive step for his generation, even just from an awareness POV.
Do you have DC? If so, what do you think to shows like Mr Tumble who utilise Makaton as a part of the program? Did you have much support growing up?

No worries @MaizeBlouse - we wouldn’t normally use the term non-hearing. Deaf is fine for most of us, some people prefer hard of hearing but it is what it is - I am deaf! (Even with implants and hearing aids).

There is currently a court case going on that is attempting to hold the UK government to disability access standards by providing a BSL interpreter for govt briefings. So you are right in that we (as a general community) are not well provided for whether for BSL or captions or just general awareness.

I do have daughter who’s 9 (not deaf as my deafness is not hereditary) and she did watch Mr Tumble but I found it rather patronising with the way Mr Tumble behaved. In any case makaton has a very different structure to BSL. You could argue that any awareness is good but it makes me cringe.

I was not brought up with BSL but did have very good support at primary school in a small village where everyone watched out for each other. Secondary school was a boarding school for deaf children so the education was better suited to us.

Do you wish you could have had your CI earlier in life?

What’s your favourite style of music and fo you think that’s influenced by how you hear it.

Do you wish you could have had your CI earlier in life?

No, because I never felt I needed it until I had my daughter and the longer you wait the better the technology is. But then how long do you wait until the technology is good enough??

What’s your favourite style of music and fo you think that’s influenced by how you hear it.

Great question!! My favourite music is where there is a strong vocal element but then I’ve always preferred that (both pre and post implant). I don’t actually listen to that much music because I prefer the visual element of the arts (I love musicals) but when I do it’s groups like M People, Amy Grant or Deanta. Come the 1st December it’s Christmas Carols!!

How much of my preference is due to the way I hear it I do not know. I probably don’t listen to enough music to make a judgment on that.

That’s interesting about music and a preference for vocals. How about electronic music, as it has more beeps and less bass. Thinking New Order, Orbital, that kind. I know v little about the technical side of music, so this may all be rubbish.

Is there any background noise with your implants? Does it sound clear to you? How do you communicate with your daughter mostly? Thank you for this AMA. The deaf community is largely under the radar of the rest of the world, IYKWIM.

Is there any background noise with your implants? Does it sound clear to you? How do you communicate with your daughter mostly? Thank you for this AMA. The deaf community is largely under the radar of the rest of the world, IYKWIM.

Yes there is background noise in that you can’t completely set it to focus on voices, that said the technology is amazing and you can suppress other sounds or turn on directional sound so that you hear the person on front of you best, or with newer CI models you can stream the telly or phone directly into the implant which cuts out other sounds.

That said I actually prefer to hear everything although that can be distracting when trying to listen to something specific.

The implant sounds clear to me - everything sounds as it should, but then (being deaf for over 40 years) I have no proper frame of reference as to how something should sound!! A barking dog sounds like a barking dog - but are you hearing the same as me or as other people??!

DD and I talk to each other, she knows that I need to see her face for best communication. She also knows to tap my arm if I am not wearing my ears, but she also does it nearly every time - drives me batty some days (tap, tap, tap!)

I do agree that the deaf community is under the radar somewhat - I’m happy to answer questions but they are only my experience- I cannot necessarily speak for my fellow deaf folk.

@LadyWithLapdog - I’ve never heard that kind of music - I think I’d rather stick to what I know!! Familiarity is easier.

Have you been rejected or made to feel bad by a member of the deaf community for choosing to hear/have a CI?

Was your hearing loss progressive? Have you seen the film with the drummer who becomes deaf and is the way he heard (beeps and squeaks) the way things initially sounded to him?

What caused your deafness?
How deaf were you prior to implantation?
Did your hearing aids give you enough access to sound to understand speech and have a conversation?

My DD was born with Auditory Neuropathy Spectrum Disorder due to being 14 weeks premature and although she could hear environmental noise well and was technically only moderately deaf, the noises were so distorted I was told thatshe wouldn't develop speech without cochlear implants.

She was bilaterally implanted in February and her implants were switched on in March, shortly before her third birthday. The biggest issue we're having so far is getting the coils to stay in place. Is this an issue you experience? She's on the lowest strength magnets and we've asked for the next strength up but audiology are refusing on the grounds they could burn her skin, so we're currently having to reposition the coils at least 50 times per day!!

Thank you for starting this thread, OP.

I have had severe hearing loss since birth - one ear no longer works and the other is getting worse. Hearing aids only go so far and an implant is the next step. What was the defining moment (for you) to decide on them? You mention your daughter; was it to communicate with her?

My lot are a bit older and we are committing to learning BSL as a family this summer. I feel as though I have let them down somewhat, but even with lipreading I am missing out. The mask element is driving me crazy!

Have you been rejected or made to feel bad by a member of the deaf community for choosing to hear/have a CI?

Hi - I have not experienced this personally but I have heard others that have. Although I believe that there is far more tolerance these days. There still remains some ambivalence with regards implanting very young children as they are not able to consent themselves, particularly as it’s not what people might deem a cure as we remain deaf whether we have an implant or not. The miracle videos are not the norm and yet expectations are set so high.

Was your hearing loss progressive? Have you seen the film with the drummer who becomes deaf and is the way he heard (beeps and squeaks) the way things initially sounded to him?

Hi - apparently my hearing loss was progressive but I do not remember that myself! The reason being is that when my mum was pregnant she had rubella (German measles - which you can now get vaccinated for) and while I was born with probably near perfect hearing, by the time I was about 1 year old I was profoundly deaf and my hearing loss has remained steady since.

No I haven’t actually seen that film, but yes when my implant was switched on everything beeped or squeaked at me so “hello” would be “beep-beep” - a sound for each syllable. Then a month after switch on it actually sounded like “hello”!!