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.

Great thread OP.

Can you tell from either lip reading or your hearing, that someone has a specific dialect/accent? Say Scottish, Welsh, American, Australian etc?

Really interesting thread, thanks Admiral

If you had a deaf child, do you think you'd get them implants, or would you leave it til adulthood?

Also, do you prefer deaf or Deaf? I've seen it capitalised online, but that may be an American thing.

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?

Hi - when my mum was pregnant she caught rubella (German measles) - this was just as vaccination for rubella was starting I think, so a bit unfortunate but then there are many other complications resulting from a maternal rubella infection that I feel I’ve “got away” with just being deaf if that makes sense.

I am classed as profoundly deaf, so right down the bottom of the audiogram. That said hearing aids did give me enough access to sound that I could communicate with the help of lip reading.

When you are tested for implant candidacy they put you through a battery of tests and they test how could you are at understanding with hearing aids in (about 75% for me), then with lip reading only (58% understanding for me) and then using sound only (no lip reading at all when my understanding plummeted to 4%!!). Of course this is all pre-implant.

About a year post-implant my understanding with both CI and HA plus lip reading shot up to 95% and my hearing only test went from 4% to 22%. So it has made a huge difference.

As for keeping coils on @Catra, they stay on pretty well for me but can come off very easily if I knock or rest my head on something (it’s a first world problem but it pops off too easily when I lie in my hammock!! )

50 times a day would drive me batty though. Perhaps they are waiting for the skin to toughen up a bit. There are some options, although I’m not sure how suitable they’d be for a three year old, and they are - get a hairdresser to thin the hair out a bit where the magnet is, use a bit of toupee tape, but I think the safest option is to use a headband or to braid the cable into her hair or use a clip (if it won’t damage the wire). Good luck with that though!!

@TheABC my DD was absolutely the defining moment for getting an implant. Up until then I was doing ok. She was about 18 months old and I really felt that I needed better hearing, up until then I really wasn’t that bothered and had in fact assumed that my deafness was not suitable for an implant.

Masks drive me bonkers!! But because (in Sainsbury’s for example) at the moment I expect people to say “would you like a bag?” I can listen for it and actually understand what they are saying. Other people have better hearing with their CI and will understand more. Some people gain access to more environmental sounds and so are more aware of their environment even if their conversational hearing does not improve.

Hearing loss can be a very socially isolating disability. Please don’t feel that you are letting people down. Find what works for you - BSL, implant, different hearing aids. You may find you prefer BSL even if you get an implant.

Another fab question here!!

Can you tell from either lip reading or your hearing, that someone has a specific dialect/accent? Say Scottish, Welsh, American, Australian etc?

Yes and no. I can definitely tell that someone doesn’t have the same accent as me but would then struggle to identify which one it was unless it was particularly strong and even then probably not!

Thanks for answering OP, and for this really great thread! I’m also really interested in whether, if you had a deaf baby, you’d implant them straight away, or let them decide for themselves later? (I know your cause of deafness is not genetic, but hypothetically)

And also, presumably your parents chose an oral approach for you, as you said you weren’t raised using bsl… do you wish they had raised you with bsl? (context: asking as a parent of a deaf implanted DC - I worry she’ll resent us when older for the choices we’ve made for her!)

If you had a deaf child, do you think you'd get them implants, or would you leave it til adulthood?

Also, do you prefer deaf or Deaf? I've seen it capitalised online, but that may be an American thing.

Would I implant my child if they were deaf? A thought provoking question. Yes I think I would, but that’s based on having done it myself and the fact that I have experience of being deaf - most deaf children have hearing parents with no deaf frame of reference. That said I am aware that they are doing nerve cell growth studies at the moment so who knows what the future holds.

As for deaf/Deaf - the distinction is that Deaf use sign language and deaf don’t. However, it is beginning to be realised that this is quite divisive and so people are trying to get is phased out and to just use deaf which what I would use.

Hi! My DS (31) was born profoundly Deaf and has an implant - his was done when he was 9 and say too old to be able to learn to speak coherently- this was back when CI were fairly new and only given if you had absolutely no hearing what stand nothing else could help you.

He loves The Beatles-can tell the difference in types of music and actually recognised several Beatles tracks-sadly he knows his own name and a few words when he listens but not much else.

Through lockdown he suffered a lot of anxiety and he went without using his CI for quite a while as he found it too loud - he has only just got back to normal use.If he is ill or tired the first thing he does is take it off.
Do you do this? He sometimes prefers the silence

@nomorespaghetti see answer 20:33 for would I implant my own child. (It’s still an intriguing question!)

As for BSL - you are right, I was brought up orally. I feel that my parents made the best decision at the time. I am glad that I learnt it when older but my skills are very rusty as I don’t use BSL often enough and so when I meet friends who are fluent I feel a bit awkward (my issues not theirs!)

My advice to you would be learn as a family - it never hurts to have two languages and it will help integrate her into the deaf BSL using community if she wants to when older. Plus when she’s not wearing her implant (for whatever reason - bath time etc) then you still
have an easier method of communicating without straining to lip read as that takes up a lot of energy.

@Mollymalone123 I prefer to put mine on immediately after getting dressed and will keep it on until bedtime. However, if I am having a lazy weekend and stay in my PJs then my ears don’t get plugged in and I keep saying pardon to my poor DD or resting my hand on her throat to feel the sounds so I can lip read easier (yes that’s a thing!!).

So I prefer to wear them but also love the silence at night!!

One of my son’s friends does that too and when DS was at school the Speech therapist would put his hand on her throat!
@nomorespaghetti -best to learn BSL as it’s a useful skill and deaf children when grown up can the mix between both worlds-also I wouldn’t hesitate to get implants for my son if we had the time over again- he was never going to talk because of how dead and how old he was when it was offered to him- if he had been offered them as a baby as they do now then his world could have been such an easier place to navigate

He’s deaf not dead 😂

Thanks @AdmiralJaneway and @Mollymalone123

Me and DH are actually both level 3 BSL, but we don’t really use it at home. I think because our daughter picked up spoken language so quickly, we put most of our energy into getting her to to speed with spoken English, and she’s forgotten most of the bsl she knew as a baby/toddler. She’s not very interested in sign now, probably because she’s fully immersed in the hearing world (mainstream school, etc).

@nomorespaghetti in that case I would rest easy - if she’s that immersed in the hearing world she’s unlikely to resent lack of BSL - I certainly don’t and as an adult I can choose to practice if needs be.

@Mollymalone123 my phone keeps correcting deaf to dead!! It’s takes hard work to make deaf stick!!

Thanks for starting this thread. I don't have any questions that haven't already been asked but it's interesting to read. I have family members with varying degrees of deafness. Some from birth, others lost their hearing as got older (but not necessarily when when were 'old')
Some have CIs, most use HAs.

@CiaoForNiao thanks. Of course this is only my own personal experience and thoughts - others would likely respond differently.

Fascinating thread! Two questions please:

1. Where do you think CI technology will be in another 30 years (ignore this if you have no such interest in these things!)

1. How bad would your residual hearing need to be in your non-CI ear before you’d consider going bilateral? Are there any advantages to bilateral CIs, other than just better picking up sounds coming from that direction?

There was a newspaper report about the state of the art dead academy in Exmouth. Obviously where the zombies go to educate the next generation.

Great thread op. I hope it’s not poor etiquette for me to recommend a series on BBC Sounds that’s been on the radio week. It’s called “The Essay - My Deaf World” and is well worth a listen.

I've looked after loads of children having them implanted. My favourite patients to look after. It's truly life changing surgery.

It used to be a post code lottery. with parents remortgaging their house to pay for bilateral implants, for their children. As some Trusts would only fund one implant. Fortunately that is no longer the case.

I've been freaked out looking at them thinking they went through the skin, I hadn't realised they are magnetic!

Can the implant be removed and replaced as technology improves, or is it once it's in, it's in?

1. Where do you think CI technology will be in another 30 years (ignore this if you have no such interest in these things!)

2. How bad would your residual hearing need to be in your non-CI ear before you’d consider going bilateral? Are there any advantages to bilateral CIs, other than just better picking up sounds coming from that direction?

@TheSockMonster thank you - I think it’s a fascinating subject myself!

Question 1 - they have come so far in the last thirty years that I think in the next thirty years they’ll be fully embedded and will not need any external parts and will also be able to pick up a far greater range of sounds as they are currently limited by the size of the electrode array.

Question 2 - the NICE guidelines are that adults should only have one ear implanted - this (as I understand it) has as much to do with likely benefit as it does with cost. (Children benefit more as their brains are more plastic with far greater learning ability). If I wanted the other ear done I’d have to go private and pay about £30,000 if not more.

As it happens I’d keep the remaining ear free for potential biological treatments as that’s on the very near horizon and I can get by with just the implanted ear although the hearing aid in the other gives me access to slightly more sound although it is very noticeable when the CI battery goes flat before the HA one does!

@EverNapping - they try and make the internal part as future proof as possible - the external bit is upgraded roughly every five years. They normally only replace the internal part due to failing bits or major infection (infection very rare fortunately).

@PurpleDaisies fortunately they have made that radio programme accessible as radio is the one medium that deaf people really can’t access!!!