Cochlear Implants

shaydy · 23-11-2011 3:35pm #1

Discuss..............

https://www.youtube.com/watch?v=BbivQyGDIKs

eyescreamcone · 23-11-2011 5:35pm

Thank god for inventing technology!

Seriously these implants are fantastic for those that really need them

Not cheap though
Around 25k
And only for people with a big hearing loss

looksee · 23-11-2011 9:21pm

Mod: Hi Shaydy, maybe you could give us a bit a background on your interest and your own views?

shaydy · 24-11-2011 5:35pm

looksee wrote: »

Mod: Hi Shaydy, maybe you could give us a bit a background on your interest and your own views?

Sure, I suppose im a typical hearing person that has been quite ignorant to the 'deaf world/community' to date. My neighbours are both deaf but apart from my interaction with them i've never had any insight into hearing loss and the community out there. My son was recently diagnosed as being profoundly deaf bi-latterally, so in the past 4/5 months i've been exposed to a whole new 'world' in a way and it's been a real eye opener for me however I realise I'm not the first and certainly wont be the last to experience this.

We're taking our son down the cochlear implant route right now, he's being assessed currently. We are aware this is not as a 'cure' but feel it is a positive option to help him have as many opportunities as he can in life. While I know that might sound like i'm insinuating deaf people are limited, that is not my intention. I merely want him to have a choice when he's older to hear or not and whether we like it or not we live in a hearing world where a lot (Myself included) are very niave to the deaf community.

From what I've seen and read over the past few months, there are a lot of positive things happening in the deaf and hearing communities right now and with the smart technology (ipads etc) being used for learning things are only getting better to ensure everyone has equal opportunity.

donegalgirl28 · 25-11-2011 9:05pm

eyescreamcone wrote: »

Thank god for inventing technology!

Seriously these implants are fantastic for those that really need them

Not cheap though
Around 25k
And only for people with a big hearing loss

They're free in Ireland.

eyescreamcone · 26-11-2011 1:05am

donegalgirl28 wrote: »

eyescreamcone wrote: »

Thank god for inventing technology!

Seriously these implants are fantastic for those that really need them

Not cheap though
Around 25k
And only for people with a big hearing loss

They're free in Ireland.

For everyone?
Or medical cards?

donegalgirl28 · 26-11-2011 9:55am

Well assumed it's for everyone? My mates who have gotten the cochlear implant, a lot of them don't have medical cards and they're getting/got it for free.

shaydy · 26-11-2011 7:33pm

donegalgirl28 wrote: »

Well assumed it's for everyone? My mates who have gotten the cochlear implant, a lot of them don't have medical cards and they're getting/got it for free.

How do your mates find the implant? How old were they when they got it?

As far as I know, cochlear implants are only done publically in Ireland i.e. free. A person without a medical card or health insurance would be liable to pay for the stay in hospital as normal.

donegalgirl28 · 30-11-2011 8:38pm

Most of them are in their late twenties. They are getting it now because their hearing is getting worse to the point where a hearing aid doesn't provide much for them, so they opted for the cochlear implant.

augusta24 · 08-12-2011 12:35am

They're free in Ireland, but there's only one department (Beaumont) and you need to be assessed etc. first.

buzzybb · 20-12-2011 12:01am

I have done research on cochlear implants and Beaumount only give one free cochlear implant but if you fell you need a second one which is possible then you would have to pay for it yourself. The free one is only available if you meet the required assessment by Beaumount as they are the only hospital that does this procedure.

four18 · 17-02-2012 8:38pm

My son, now 9 got his CI just before his 2nd birthday and is doing brilliantly. He had his 7 year assessment last week and he is on par with his hearing peers. He got an upgrade last summer from the body worn processor to the behind the ear one and it is working brilliant. I think catching a child very early on is a big help on how they get on.
The whole team in Beaumont have been great.

LostBoy101 · 18-02-2012 12:48pm

Wow, never noticed this forum until now.

I've been born deaf and wearing hearing aids ever since. I rely on lipreading as I find it impossible to catch what people are saying if I don't read their lips and I was suggested the CI numerous of times by my parents.

My hearing has gotten worse every year so I've given a thought about getting the CI and I'm putting myself on the list in Beaumont hosiptal. The only thing that stopped me from getting it earlier on is that losing all the hearing I've have experience will be vanished and there is no going back. My parents have supported my decision since then but until now they are concerned and want me to strongly consider getting the CI.

I am aware that this isn't a 'cure' but if it does improve my hearing greatly I would consider getting it but if any of you have experience of CI as a teenager I would value your opinions as it would help me make a better decision.

shaydy · 23-02-2012 9:36pm

four18 wrote: »

My son, now 9 got his CI just before his 2nd birthday and is doing brilliantly. He had his 7 year assessment last week and he is on par with his hearing peers. He got an upgrade last summer from the body worn processor to the behind the ear one and it is working brilliant. I think catching a child very early on is a big help on how they get on.
The whole team in Beaumont have been great.

Thanks for sharing, did your son have any speech/hearing prior to his implant?

four18 · 24-02-2012 12:04pm

Hi ! No he had no hearing or speech prior to CI. When he was switched on he did not say a lot for 6 months then Wham ! He was saying maybe 30/40 new words a week and he has not shut up since ! ! It took a lot of falls before he managed riding his bicycle without the stabilizers ( A balance thing ) but he now cycles to school on his own every day so Its all good. If you did not see the processor you would never know by talking to him that he was deaf.
Any Qs feel free to ask.
Mark

shaydy · 24-02-2012 12:46pm

four18 wrote: »

Hi ! No he had no hearing or speech prior to CI. When he was switched on he did not say a lot for 6 months then Wham ! He was saying maybe 30/40 new words a week and he has not shut up since ! ! It took a lot of falls before he managed riding his bicycle without the stabilizers ( A balance thing ) but he now cycles to school on his own every day so Its all good. If you did not see the processor you would never know by talking to him that he was deaf.
Any Qs feel free to ask.
Mark

Thanks Mark, really appreciate that. My son got the green light to get the implant Tuesday this week with the op in May. He has no speech or hearing right now and even though I've seen kids with the implant and am aware each child is different I really have no idea what to expect so reading stuff like that helps. He's 19 months now so I'm excited to see what the next few years bring for him. Shay

michaelflynn61 · 15-03-2012 12:13am

donegalgirl28 wrote: »

They're free in Ireland.

They are only free if you meet the requirements which are quite strict (which makes sense). I have absolutely no hearing in my left ear, it is a dead ear. My right ear has no problems. I don't qualify for a cochlear implant.

Fat Robot · 22-04-2012 9:27pm

Shay, I wish you good luck and patience. My daughter was implanted in August 2011. Now she is 2 y/o and we are planning to implant second ear. If you have any questions feel free to ask. The only thing: I am from Russia so don't know Irish particularities.

Some general information on CI:

CI is suitable for the persons with the specific hearing disfunction: absence or damage of the sensitive cells in the cochlea which is a part of the internal ear. The most common reason for the infants is genetics. See
http://en.wikipedia.org/wiki/GJB2

Dependent on the country the probability for the newborn has this disfunction is 1/6000..1/3000 which considered to be pretty high.

Thus initial qualification for the CI includes
- several audiology tests including combined audiology and EEG
- genetics test
- There might be social qualification for the parents the case they claim for the support from the State.

Implant surgery is routine though some complications are possible. See
http://en.wikipedia.org/wiki/Cochlear_implant#Risks_and_disadvantages

Prognosis for the rehabilitation is positive for the infants with the initial hearing loss implanted at the age below 4 y/o in the case of the intensive aural education afterwards. For the kids with the initial hearing loss implanted at the age above 6 y/o prognosis is moderate. Overall idea: the earlier the better. The earliest is some 8 m/o.

Tip for parents:
Initial diagnostics is absolutely harmless. If you suspect your child has deafness visit audiologist.

Tip for "wanna be parents"
Make genetics test beforehand. The probability of the deafness for the child if both parents have connexin-26 disfunction is 1/4.

shaydy · 24-04-2012 6:57pm

Fat Robot wrote: »

Shay, I wish you good luck and patience. My daughter was implanted in August 2011. Now she is 2 y/o and we are planning to implant second ear. If you have any questions feel free to ask. The only thing: I am from Russia so don't know Irish particularities.

Thanks appreciate it. How is your daughter progressing? My son gets his implant this week, hoping all goes well.

May I ask, where are you arranging for the second implant and how much is it costing? I have enquired about this and for us, we would have to look to the UK for a private implantation. No idea about cost yet.

Fat Robot · 25-04-2012 12:20am

shaydy wrote: »

Thanks appreciate it. How is your daughter progressing? My son gets his implant this week, hoping all goes well.

May I ask, where are you arranging for the second implant and how much is it costing? I have enquired about this and for us, we would have to look to the UK for a private implantation. No idea about cost yet.

Shay, good luck for your son and for you. I hope everything will pass smoothly.

Answering your questions:

Progress:
For today our daughter understands 250+ words (so called "passive vocabulary") and simple phrases (where is your nose?). 2 months ago it seemed that she could pronounce "contours" of some words but now we can say that either we were mistaken or it just disappeared. Currently her speech consists of only vocals but she tries to communicate in this way e.g. "hello" = "e-o". Our aural tutor says that we are on the right track. For kids without hearing disorders this volume of the passive vocabulary is enough for the speech to start. Implanted children need to go further and their speech appears together with understanding of the complex sentences: "go to the room, take socks in the drawer, sit on the chair and put them on". Also we were warned not to study too intensive or else she can lose interest for the exercises.

My wife is fully dedicated to daughter and daughter's exercises. We visit aural tutor once a week to check the progress and get new study plans and instructions.

There were no and there are no physical and psychological discomfort with external processor. She is ok in verbal and behavioural communication both with kids and grown-ups. For active games we are going to try to fasten earpiece with hairpiece tape: http://www.vapon.com/topstick.htm .

Second implant:
For the second ear we've got full allowance from Russian State for 2 reasons
1) We are making good progress;
2) First ear is implanted with Nucleus CI500 which is affected by voluntary recall program:
http://www.cochlear.com/uk/voluntary-recall-notification-nucleus-ci500#
That makes us really nervous.

In Russia implant for one ear + installation surgery + implant tuning cost approx 25K Euro. x2 for both ears.

Russian family we know made 2 ears at once in Germany:
http://www.mh-hannover.de/hno.html
35-50K for one ear, 50-70K for both

Another clinic in Hannover:
http://www.cic-hannover.de/

Two clinics in Eastern Europe which are considered to be good:
http://www.orl-lfuk.sk/
http://www.ifps.org.pl/web/iaktualnosci.php
25-30K for one ear, +20K for the second one

Up to my opinion the main difficulty with the surgery made abroad is the necessity for the trips for the subsequent switching on (approx in 1 month after the surgery) and several tunings (each in 1-2 month for the first 2 years). Also it is not clear how to proceed in the case of complications. UK has long history and is well known for implanting but it would be more convenient if Irish doctors and technicians could support implant which had been installed in the UK. I have no idea if it is possible. If not at once a second ear is usually implanted after 5-10 months after the first one.

shaydy · 03-05-2012 11:57am

Wow, some great info there thanks!! And your daughter is doing excellently, great input there. My son's implantation went well and he's back to himself, switch on date is 23rd May which is an exciting day for us although we're keeping our expectations low for the next twelve months to see how he adapts

four18 · 03-05-2012 12:15pm

Wow Good luck with the switch on. My son was switched on just after his second birthday and did not do or say a lot for nearly 6 months, Then Wham !! He has not shut up since. He is 9 now. I really do forget he is deaf now as he is well on par with hearing children. He is getting a bit self concious now and does not want his his hair cut as it covers his processor behind his ear.
I mentioned this to the principal of his school and he told me thats fine, let him do what he feels best with. Dont expect any big changes for a while after switch on as kids are like blotting paper, they are sucking everything up. Just make sure its on and treat them as you always did, The results are remarkable. Jennifer in CI in Beaumont has a video of Cian taken just 2 months ago and would show it to you if you told her you were talking to Mark.
I would be happy to meet you for a coffee with Cian if you would like sometime. Just pm me.
Mark

shaydy · 03-05-2012 2:30pm

four18 wrote: »

Wow Good luck with the switch on. My son was switched on just after his second birthday and did not do or say a lot for nearly 6 months, Then Wham !! He has not shut up since. He is 9 now. I really do forget he is deaf now as he is well on par with hearing children. He is getting a bit self concious now and does not want his his hair cut as it covers his processor behind his ear.
I mentioned this to the principal of his school and he told me thats fine, let him do what he feels best with. Dont expect any big changes for a while after switch on as kids are like blotting paper, they are sucking everything up. Just make sure its on and treat them as you always did, The results are remarkable. Jennifer in CI in Beaumont has a video of Cian taken just 2 months ago and would show it to you if you told her you were talking to Mark.
I would be happy to meet you for a coffee with Cian if you would like sometime. Just pm me.
Mark

Cheers Mark, Sinead in Beaumont was due to take a video of Ben too but as he was called in unexpectedly they're going to do it later. I've been recording him myself also the odd time, think it's a good idea to see it in years to come. I think its only natural for kids to get self conscience at that age whether its hair or runners clothes etc so i sure that'll pass. By coincedence we met a lad aged 16 in hospital due to a hurling accident, spoke to him for a good five minutes before I realised he had an implant!! It was amazing to see the benefit to his speech communcation so many years after implantation and we had just begun the journey.

Do we get any option on the colour of processor for cosmetic purposes?

donegalgirl28 · 04-05-2012 9:10am

Brown or nude is usually the colour.

shaydy · 24-05-2012 4:43pm

My son had his implant turned on yesterday, what a day! He is still very sensitive to sound so we have to make sure he's eased into it as it.

Anyone with any experience any advice for the first few weeks? My son had no hearing at all prior to switch on so it is and is going to be quite an adjustment for him I'd imagine. He got a fright during his first switch on but was fine after a few seconds once the volume was adjusted

four18 · 24-05-2012 8:43pm

Congratulations on the switch on. My only advice to you is have it on him every waking hour and just chat to him as normal. Dont get in his face about it and let him soak it up. My own son had no hearing prior to implant and did not say a lot for maybe 5/6 months but he has not shut up since !! He is 9 now and if you did not notice the processor behind his ear, you would never believe he was deaf. He is using the telephone now and he loves school, So my only advice is just let it happen at his pace and before long you will be amazed at the progress. I wish you and your son all the best.
Mark

shaydy · 25-05-2012 12:40pm

Thanks Mark, we're going to do just as you say. Putting it on first thing in the morning is a little hard for him but after a few mins he's back to himself and doesnt bother with it. Keeping it on him on the other hand is a nightmare haha!! Any run of jump and it's off him but I think thats down to the weak magnet they're using right now due to his age and skin maturity. Shay

four18 · 25-05-2012 12:47pm

Get your thumb and middle finger either side of the magnet and turn it clockwise and adjust the magnet closer to his head, ie bring it up closer. to the top of the cone. The magnet adjusts as it is threaded like a nut and bolt. Cians has never fallen off and he plays football. Try that.
Regards, Mark

shaydy · 25-05-2012 2:11pm

four18 wrote: »

Get your thumb and middle finger either side of the magnet and turn it clockwise and adjust the magnet closer to his head, ie bring it up closer. to the top of the cone. The magnet adjusts as it is threaded like a nut and bolt. Cians has never fallen off and he plays football. Try that.
Regards, Mark

Will do, they showed me that during the week but they said he wont have the stronger magnet until hes older but right now its impossible to keep it on for a consistent period of time. If he does anything other than walk its off, im back in next wednesday so I'll se how we get on between then and now

Fat Robot · 25-05-2012 5:28pm

Shaydy,

Congratulations to you and your son. Welcome to the world of sounds.

Mark is totally right. Brain center that is responsible for sound processing should be at the permanent stress to be exercised. For the first time try to avoid artificial (TV, radio) or loud sounds as they might be unpleasant and frightening. For you child your voice is always the most pleasant sound.

Feeling of sound is absolutely new to your child. That is why start with games and exercises visually showing the meaning of sounds i.e. every visible action produces sound: (toy drum, rattle or shaken box with beans, fallen toys). Also visualize different properties of sound:
- high pitch "aaaaaaa": toy plane flies high; low pitch "aaaaaaa": toy plane flies low
- quiet "la-la-la": doll dances quietly; loud "LA-LA-LA": doll dances "like crazy";
- on the whiteboard draw continuous line simultaneously pronouncing continuous "aaaaaaaaaa!" and then dashed line simultaneously pronouncing dashed "a! a! a! a!"

For better advice you have to visit aural tutor. They will provide a set of exercises and proper personal schedule.

As an estimate: with proper and intensive exercises implanted children in average catch up in sounds and speech perception in the age equals to 2 x age of implant installation.

To keep magnet in place maybe it is reasonable to wear a cap. as for earpiece: I wrote about headpiece adhesive tape. We use it and it works ok with almost no skin reaction.

SerialComplaint · 25-05-2012 11:52pm

Just came across this article on the Irish Deaf Kids website today;

http://www.dailymail.co.uk/news/article-2149613/Moment-deaf-girl-10-moved-tears-new-implant-allows-hear-breathing.html#comments

Cochlear Implants

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