Cochlear implants for 5yo Son

[welshjon81]

Hi all,



My little boy was diagnosed as profoundly deaf in both ears at the age of two and a half. For the last two years he has worn hearing aids. Although these have been a god send and his vocabulary and speech has progressed greatly he is still a long way off other children his age.

He is a confident and happy little thing and gets on with everything fine but now the time has come that we have been offered to have cochlear implants.

After a lot of research his mum and I are still struggling to decided whether to go ahead with the implants or not. There are a lot of risks involved and if anything goes wrong he will lose all of his hearing and the results are irreversible.

I just wondered if there are any other parents who have gone through with the implants for their children? Or if anyone else out there who has implants and can share their experiences and help with this monumental decision I have ahead of me.

Thanks a lot,

Jon

[Bill]

I assume you've made contact with the NDCS? And have a teacher for the deaf? That's probably the best way to make contact with other deaf children and their parents.

Our eldest is severe-profoundly deaf but thankfully manages with hearing aids turned up to the max, so he's coping fine at a mainstream school. His hearing loss has slowly progressed so it's a decision we might have to make in the future but we'll put it off as long as we can.

ETA Where in Wales are you? We used to live in Bristol so could put you in touch with some people who've gone through it.

Edited by Bill on Thursday 29th May 14:42

[theguvernor]

I only know 1 person with a Cochlea implant.
He's about 18/19 now & was born deaf.
Ironically i work with him in a nightclub.
He says it's the best thing he ever had done.
He speaks pretty clearly & understands people by a combination of lip-reading & listening.

He speaks like someone who has a slight lisp.

Sorry it's not much help but i really don't know much about it.

[petemurphy]

my friends child has them I can put u in touch with them if you want - improved her life no end from what i know - dm me if you want mail

[djsmith74]

welshjon81 said:

Hi all,



My little boy was diagnosed as profoundly deaf in both ears at the age of two and a half. For the last two years he has worn hearing aids. Although these have been a god send and his vocabulary and speech has progressed greatly he is still a long way off other children his age.

He is a confident and happy little thing and gets on with everything fine but now the time has come that we have been offered to have cochlear implants.

After a lot of research his mum and I are still struggling to decided whether to go ahead with the implants or not. There are a lot of risks involved and if anything goes wrong he will lose all of his hearing and the results are irreversible.

I just wondered if there are any other parents who have gone through with the implants for their children? Or if anyone else out there who has implants and can share their experiences and help with this monumental decision I have ahead of me.

Thanks a lot,

Jon

Hello,

I am profoundly deaf and have been since birth (both Mum & Dad are deaf) and, although I do not have cochlear implants I am not entirely sure I would go for it given the opportunity. As you say, there are risks involved and losing whatever residual hearing your son has would be traumatic. I am in my 40's and, growing up, I went through all manner of hearing aids from the old-fashioned boxy hearing aids with wired ear moulds, through to the first behind the ear aids and finally onto the latest digital aids. The difference in sound quality between the current crop of digital aids and my previous analogue aids are nothing short of staggering. It actually took me nearly a month to get used to hearing a whole new world in a different level of clarity. Growing up, I had a speech therapist once a week at school to help me with my speech, and was integrated with conventional hearing school classes (rather than specialised deaf schools) which helped an awful lot with my speech & hearing recognition. Through determination & hard work on my parents behalf, I left high school with a raft of A-rated GCSEs, went on to graduate from university with an honours degree and am now holding down a very successful career. The point I am trying to make is that the cochlear implant is only small part of living & learning with a disability, and do not discount the quality of today's batch of digital hearing aids (which I didn't have when I was a nipper). Although I know little about cochlear implants, perhaps you could find out whether they can be retro-fitted at a later date when your child is older, and you may be in a better position to make a call (and share the decision with your child) as you will have seen how your child grows & develops with conventional digital aids.

Hope I helped in some way, and if you need to pick my brains further, please drop me a line.

Darren

[Muffsy]

welshjon81 said:

Hi all,



My little boy was diagnosed as profoundly deaf in both ears at the age of two and a half. For the last two years he has worn hearing aids. Although these have been a god send and his vocabulary and speech has progressed greatly he is still a long way off other children his age.

He is a confident and happy little thing and gets on with everything fine but now the time has come that we have been offered to have cochlear implants.

After a lot of research his mum and I are still struggling to decided whether to go ahead with the implants or not. There are a lot of risks involved and if anything goes wrong he will lose all of his hearing and the results are irreversible.

I just wondered if there are any other parents who have gone through with the implants for their children? Or if anyone else out there who has implants and can share their experiences and help with this monumental decision I have ahead of me.

Thanks a lot,

Jon

I have worn a Hearing Aid since I was 6 years old and I am now 48...
I have been profoundly deaf for most of that time and my hearing range is from 70 decibels down to 120...
We have 9 ranges and my best range/pitch is 70, another at 80, 2 at 90 1 at 100 and the last 4 at 120...
Just I case you don't understand that, it means that the noises need to be 70 decibels before I hear it with my Aid and so on...
I have grown up with all these problems, had the School pisstakers, had plenty of frustration, had 2 children of my own, never been on the Dole, never made a Phone call more frustration and i run my own business and i have been married for 27 years but its not been easy...
6 weeks ago I was admitted to Hospital where I had a Cochlear Implant fitted...
I am due to have the "switch on" in 4 days time, june 4th and i am very excited but after 42 years I'm also very nervous...

My situation is very different to your Sons...
I had the Op in my right ear while still having my usual hearing Aid in my Left ear so nothing really changed for me...
Your Son will have both ears turned off and yes they are irreversible when done but it will open up a whole new world for him and to be fair, it's easier to learn when you are young...
If he doesn't have the Op he will still be Deaf though still be a Happy little thing...
When I was making the decision on whether to have the Op I was told all sorts of numbers and percentages of success ates blah blah but the one thing that swayed it for me was the Story of a young Boy told to me by my Assessor...

This young Boy was Born Deaf and the Doctors tried to persuade his Mother to give him a double Cochlear Implant...
The Mother flatly refused due to the fact that the Implants were not quite as advanced as today and also because you are going into the unknown, which was what I was worried about...
Anyway, this Boy had Grown up and on turning 18, 3 years ago, he made the decision himself to have 1 implant...
They only give 2 Implants to Children as they have their life in front and would benefit more from the usage...
So the Boy had an Implant against his Mothers wishes, he had a slow start as he was born Deaf and it took a lot of Programming sessions to help him hear and his hearing gradually started to come back...
2 years after the Op the Doctor/Assessor phoned the Mother to see how the Boy was getting on...
The Mother wasn't home, a Guy answered the phone and the Doc asked for the Boy, "it is me"...
My Doc said she was overcome and had difficulty in holding back as she had known the Boy all his life and she had eventually reached her Goal...
The Boy had never made a phone call before and was Deaf from Birth...
I have made a Phone Call before but never really understood and that's by talking to Family who spoke slow and clear and it was still useless for me...
So having been told all that I too was a little overcome because if there is one thing I want in this life it is to make a phone call to my kids of 26 and 23 something I have never done...
I have got this far in life without all this but the future is surely looking up for me and though I don't expect an easy ride I do expect a big improvement...
My hearing with an Implant will bring all my ranges/pitches up to 20 decibels, a normal hearing persons range is 10 decibels, mine is 120 decibels, a Vast Vast improvement, the problem could be the fact that I have mastered Lip-Reading and Expressions for 42 years and this will hold me back a little with phone work as my brain will still be expecting me to Lip-Read which you cannot do on the phone...
They cannot guarantee that I can use the phone but that my hearing will definitely improve, I should be able to join in conversations with more than 1 person and talk in groups etc, noises will be clearer, for example a customer of mine when told I was going to Tunisia for a holiday he said "there's loads of Muslims over there" to which I replied " great, I could do with some pussy"...
Muslim/Pussy sounds like it to me...

I would say, give the Lad a chance while he is still young, it's the best time, I'm sure I would have achieved more in life had I had the Op sooner...
Don't make the choice lightly...
I will have switch on in 4 days but obviously I have to start at the bottom but I will report here on either 4th or 5th and let you know my first Impressions or maybe you can leave your number and I give you a call, I jest haha, be good though...

Good Luck whatever you decide

[egor110]

Dumb ass question here and i'm not trolling, how come you can't make a phone call if you have the implants and previously had hearing aids?

[RichS]

I lovePistonheads. What a community.

[Muffsy]

egor110 said:

Dumb ass question here and i'm not trolling, how come you can't make a phone call if you have the implants and previously had hearing aids?

I have the Implant but I'm still in the Healing process...
I don't yet have the Processor fitted, this will be on Weds 4th...
The Hearing Aid helps me to hear but not clearly, it's all muffled noises, the Lip-Reading adds the finishing touch...
So if I'm not seeing the mouths move I cannot make out what's being said but can still hear the noises and they are just noises...
I can hear someone on the other end of the Phone but its all Blah Blah blah hahaha lalala, just nothing meaningful and I still can't make out if its a Man or Woman no matter how quiet the background is or how intently I listen...
In other words I rely on Lip-Reading...
If my Wife of 27 years, normal hearing, was calling me from the other room I would hear her simply calling but wouldn't know it was her, obviously if we were only 2 in house yeah but I'm saying that everybody's voice sounds the same basically...
I don't hear Smoke Alarms, Fire Alarms, Whistling or any High pitched noises...
I've learned to live with all that for 42 years so its no biggie...
From next week I will have a Hearing Aid as usual in my Left Ear and the New Implant (already fitted inside my head) with Processor in the Right Ear, gonna be strange to start with but it will certainly benefit me in the near future...
Should be able to distinguish Accents and hear Birds singing in the morning and generally hear louder and clearer...

[ninja-lewis]

Muffsy said:

egor110 said:

Dumb ass question here and i'm not trolling, how come you can't make a phone call if you have the implants and previously had hearing aids?

I have the Implant but I'm still in the Healing process...
I don't yet have the Processor fitted, this will be on Weds 4th...
The Hearing Aid helps me to hear but not clearly, it's all muffled noises, the Lip-Reading adds the finishing touch...
So if I'm not seeing the mouths move I cannot make out what's being said but can still hear the noises and they are just noises...
I can hear someone on the other end of the Phone but its all Blah Blah blah hahaha lalala, just nothing meaningful and I still can't make out if its a Man or Woman no matter how quiet the background is or how intently I listen...
In other words I rely on Lip-Reading...
If my Wife of 27 years, normal hearing, was calling me from the other room I would hear her simply calling but wouldn't know it was her, obviously if we were only 2 in house yeah but I'm saying that everybody's voice sounds the same basically...
I don't hear Smoke Alarms, Fire Alarms, Whistling or any High pitched noises...
I've learned to live with all that for 42 years so its no biggie...
From next week I will have a Hearing Aid as usual in my Left Ear and the New Implant (already fitted inside my head) with Processor in the Right Ear, gonna be strange to start with but it will certainly benefit me in the near future...
Should be able to distinguish Accents and hear Birds singing in the morning and generally hear louder and clearer...

It's the difference between hearing and listening. We may hear someone speak but they might as well be speaking in Ancient Greek for all the difference it makes to our understanding of what is said.

[Muffsy]

ninja-lewis said:

It's the difference between hearing and listening. We may hear someone speak but they might as well be speaking in Ancient Greek for all the difference it makes to our understanding of what is said.

ninja-lewis said:

It's the difference between hearing and listening. We may hear someone speak but they might as well be speaking in Ancient Greek for all the difference it makes to our understanding of what is said.

That's an excellent point...
The OP's Son is hearing things but not really understanding...

For the Poster;
Make sure your Son can see your Face so he can see you speaking, if you have light/window behind you he cannot see you...
It helps for the Deaf person to have their backs to a wall in many situations as sound is captured better, EG; in Restuarants I Sit at a corner table so there are no sounds behind me and everything is in front and I can see it, if the Deaf person has people all around it can get very confusing with sounds coming from all angles and its harder to concentrate...
At School all the Teachers used to ask me to sit at the front for all the help it gave me, I think it's better to sit where everybody can be seen...
When driving, try not to open windows, no matter how wide open they are, will bring a gust of air that makes things very noisy for Hearing Aid wearers, a whooshing side that is Amplified, like really loud Radio Static, can be uncomfortable and we wouldn't hear much else above that...
Hearing Aids Amplify ALL sounds, not just your voice but the Cars outside, the Wind, the neighbours Dog Barking etc, furthermore all these sounds are hard to distinguish, noisy places can be frightening for me even now as I cannot make out what noise is what...
Strangely, turning the TV up or speaking louder/shouting does not always work, it simply makes the noises that Deaf people hear a lot louder. I hate it when people shout after I don't hear the first time and people I have difficulty in understanding are the ones I avoid conversations with as they are so frustrating, maybe it's not their fault but that's the way it is...
Use as many Hand Signals as you can, expressions, actions but most importantly get the Deaf Persons attention first...

Your Son will enjoy your conversations a lot more and will come to you with worries/troubles/problems if they can understand you, if they cannot understand you they will go to someone else or if there is no one else at the time, they will bottle it up...
My Grand Daughter is 6 and she knows I have problems and she doesn't come in all talking naturally expecting me to hear, she has learnt to speak slowly and clearly and she uses he Hands and expressions, my Daughter taught her that after growing up with me and understanding how to talk to me. It warms me that my Grand Daughter takes the time to include me...

Remember, A Deaf persons eyes are his/her Ears...
Your Son would need a lot of help as he was in a worse course of hearing to mine, being Deaf in both ears from 2...
I was lucky to have 6 years of hearing and understanding before going Deaf, through Chicken Pox, so that has enabled me to talk perfectly normal thru life...

I sincerely hope some of my experiences has been of some help, no matter how small...

Edited by Muffsy on Sunday 1st June 08:07

[egor110]

Thanks for the explanations.

So would you ever be able to watch a band in concert or would that be too risky for the implant?

[Muffsy]

egor110 said:

Thanks for the explanations.

So would you ever be able to watch a band in concert or would that be too risky for the implant?

I'm answering this as a Hearing Aid wearer cos I can't answer as an Implant wearer as I do not have the complete Implant yet so cannot give an answer...
But with the Hearing Aid ;
I never go to see Bands as the noise is deafening...honest, in the sense that everything will be really loud and just so uncomfortable...
Never go to Cinema cos would need subtitles anyway...
Go to Old Trafford now and again, it's really loud and unclear but I only need the eyes really...
All Television is watched with Subtitles...

[ninja-lewis]

Muffsy said:

egor110 said:

Thanks for the explanations.

So would you ever be able to watch a band in concert or would that be too risky for the implant?

I'm answering this as a Hearing Aid wearer cos I can't answer as an Implant wearer as I do not have the complete Implant yet so cannot give an answer...
But with the Hearing Aid ;
I never go to see Bands as the noise is deafening...honest, in the sense that everything will be really loud and just so uncomfortable...
Never go to Cinema cos would need subtitles anyway...
Go to Old Trafford now and again, it's really loud and unclear but I only need the eyes really...
All Television is watched with Subtitles...

The other issue as a hearing aid wearer is protecting what little hearing you have left from further damage.

BTW Muffsy in case you haven't come across this before, there are subtitled showings at cinemas. The major chains have search filters on their website that will display them or you can visit http://www.yourlocalcinema.com/locations.html You sometimes have to wait a week or two and the times are often not the most convenient.

[djsmith74]

egor110 said:

Thanks for the explanations.

So would you ever be able to watch a band in concert or would that be too risky for the implant?

As a profoundly deaf wearer of the latest digital hearing aids I can confirm that, through hard work, you can "teach yourself" to listen and understand the different nuances of music. Yes, I still need to lipread because, as with majority of all deaf people, the part of your hearing that converts the sound of someone's voice into a speech that you can recognise is damaged beyond repair (without lipreading, someone's voice is just an ineligible noise). However, I have used music as a medium to teach myself how to "tune" into my hearing aids and understand and seperate all the different noises that make up a song, i.e. drums, guitar, keyboard, singer. I have then applied this method to everyday sounds to allow me to tune in and recognise new sounds as required. With regards to songs themselves, I just simply memorise the lyrics in the CD booklet and match those lyrics to the singers voice, to make a recognisable song. It has now reached a point where I have an extensive CD collection and go to concerts on a regular basis - yes I do get some strange looks, especially at rock concerts to which I usually respond with the line of "been to too many AC/DC concerts mate, and my hearing is screwed!" The adage to all this is that, even with ""conventional" digital hearing aids, anything is possible with a little hard work and dedication.

[welshjon81]

Hi everyone,

Sorry for the late response but my family and I have been away for a couple of weeks and I'm only now getting the chance to reply.

Thanks so much for all of your input, advice and stories on the matter.

Muffsy, a special thank you to you for your time it took to write that post. How much pain/discomfort did the op cause and how are you finding the implant now after it has been switched on?

Jon

Edited by welshjon81 on Thursday 12th June 10:47

[Mr Snap]

I'm not an expert but have several years experience teaching deaf children. Something you need to consider is 'language development'. According to theory, the child's brain (and understanding) develops in stages - think of it as stages, like learning to walk, which most kids do at a specific age. If a child, say through deafness, misses one of these developmental stages in language - it becomes more difficult to catch up at a later stage and remedial work will be required. This has significant ramifications for things like emotional development. In the school where I worked, you'd often see kids of fifteen but with the emotional skills of a ten year old. In short, deafness isn't just a hearing problem, it affects lots of other things. Most deaf kids do catch up in the end - often in their early twenties - but it nearly always takes longer...

This is why at the end of the last century many deaf kids 'failed to thrive in mainstream' and ended up in special schools for the deaf. Not just because they couldn't hear but because they also required a specialised nurturing environment. The proof of the success of cochlear implants is that most of these schools have closed. Early diagnosis and implantation have, almost at a stroke, removed this difficulty and, nowadays, most deaf children thrive emotionally within mainstream provision.

It's a tough decision, cochlear implants are a risk, requiring an incredibly complex operation but the benefits are also potentially huge. Many of the kids I taught now have implants and given the choice would never return to hearing aids.
Talk to the NDCS and parents with kids who've been through it all already.

[welshjon81]

Hi all,

Just a quick update I suppose.

We went ahead with the implants and the little guy was switched on in February. I can honestly say that this was the best decision I/we have ever made. The little man took it all in his stride and although the opp was quite traumatic (for his mum and I mostly), the pro's have definitely outweighed that.
His speech and vocabulary have shot through the roof since having the implants. He is so clear to understand now that apart from the visual impact the implants have, you could barely tell he has a hearing difficulty at all.

He still gets a little muddled up with words at times but through correcting him and giving him a slight nudge on how to use certain words correctly and in the right order, he's coming along fantastically.

This technology has been an absolute god send for our little family and the NHS have been fantastic throughout the whole process. I will never complain about paying tax or NI again.

If anyone ever needs any advice on the matter then please feel free to contact me and I would be happy to answer any questions.

Thanks for all your replies to this post even though it was going back quite a long time ago!

[Munter]

[Bill]

Thanks for the update, always good to hear what's happened especially when it's such a great result.