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Cochlear Implants?????

(105 Posts)
Laurney Tue 10-Jul-07 17:44:37

DD (15 weeks) has been diagnosed w profound sensironeural hearing loss. DH and I were devastated at first, having no prev experience w deafness, but now DD is being accessed for a cochlear implant, maybe at age 1. Does anyone have experience with this? We don't know what to expect in terms of success, what is involved... and Google has produced such a range of possibilites it's hard to discern which stories are accurate/typical.

whokilledharrypotter Tue 10-Jul-07 21:13:45

My nephew had this done and it worked - his hearing is now 80% whereas before he could hardly hear. But he was two when he had it done (he missed out on the tests). However if it doesn't work, there are other treatments.

The person you want to talk to here is probably NikkiBFG - she is deaf and also lovely, so I'm sure she'd be able to tell you a bit more about it in general terms. Shall I alert her to your thread?

PussinJimmyChoos Tue 10-Jul-07 21:54:26

Hiya

Its NikkiBFG here but have name changed - not that I can actually afford Jimmy Choos! lol!

I'm profoundly deaf - sensorineural (sp!) and have been since the age of two years old - I don't have a cochlear implant but I'm very familar with deafness and the whole issues around it so please please feel free to CAT me any time you need advice and I'm more than happy to help you.

Just to give you something to think about though - I'm now 30 and have been to university, obtained a BSc in Biomedical Sciences, got married and have a lovely DS who is just over a year old and without sounding bigheaded (honest!!) I think I cope really well so just wanted to give you a positive outlook on things as you are probably feeling quite uncertain about the future!

Big big hugs

Nikki

PS My marriage is great as if my hubby snores it doesn't cause a row

whokilledharrypotter Tue 10-Jul-07 22:26:18

.......and she's really lovely, she forgot to mention that. My dad is deaf in one ear, they only found out when he turned 60 - we thought he was just ignoring us!

PussinJimmyChoos Tue 10-Jul-07 22:28:00

I am lovely! <preen> very sweet of you to say so and thanks for alerting me to the thread

Hows your DD - still child from hell or back to angelic???

whokilledharrypotter Tue 10-Jul-07 22:30:13

Grr woke up at 2 bloody AM, stayed awake till five and then conked out - by which point I was wide awake and v cross. Then the little monkey refused to sleep tonight but eventually passed out (no daytime naps) at 8pm.

DH has also conked out so I'm on my own and thinking about going in the bath because we have super swanky evening tomorrow....but let's not hijack Laurney's thread with our mutual appreciation society, I'll email you.

CalifrauniusFudge Tue 10-Jul-07 22:37:19

Message withdrawn at poster's request.

CalifrauniusFudge Tue 10-Jul-07 22:38:20

Message withdrawn at poster's request.

PussinJimmyChoos Tue 10-Jul-07 22:39:43

Califrau - I'm at the expression switched on....I will think of that when I put my hearing aid in tomorrow...oh I'm switched on!

whokilledharrypotter Tue 10-Jul-07 22:40:19

See, there's loads of helpful folk on here - bumpety bumpseees......

PussinJimmyChoos Tue 10-Jul-07 22:40:42

Well in your defence, I'm not an expert in Cochlear implants as chose not to have one so I'll let you off

CalifrauniusFudge Tue 10-Jul-07 22:45:05

Message withdrawn at poster's request.

PussinJimmyChoos Tue 10-Jul-07 22:59:18

I'm too knackered these days to tune in...DS has TWO molars coming through.....

BreeVanDerCampLGJ Tue 10-Jul-07 23:09:06

My DH had an implant four years ago. It changed our life for the better. Little things that hearing people take for granted, like talking in the dark were restored to us.

DH's test results are constantly in the top end of the scale. This is because he still had clarity of speech. Your DS does not have the clarity of speech situation, so in essence would learn to "hear" along side the implant, which is even better.

It is a very very expensive operation and they do not implant lightly. They will always implant a child before an adult, so if you have any deep seated reasons for not wanting it then you should speak up before they spend the money.

In general the whole procedure, including implantation and aftercare is about £50 K.

Will search for a link, that always makes me cry. Someone who was implanted at the same centre as my DH.

BBBee Tue 10-Jul-07 23:11:53

Hi Laurney

I understand that this news is traumatic for you. Early identification is so crucial in these cases. I know you have trawled the internet but I can really recommend the NDCS website

this is something they have put togethr for families about cochlear implants. If you look round the site I think there are forums for people in your position too.

I worked for them for a while and I know how carefully put together their stuff is.

Best wishes and keep posting.

BreeVanDerCampLGJ Tue 10-Jul-07 23:12:06

Karen's story

PussinJimmyChoos Tue 10-Jul-07 23:19:23

Bree - jumping in for a minute there - how deaf was your DH before he had this done? When you say top of the scale, does that mean like a hearing person? Am quite interested actually because when I was a teenager and cochlear implants came out, they weren't as advanced as they are now - hence me choosing not to have one, but the top of the scale thing sounds quite promising....

Laurney Tue 10-Jul-07 23:19:56

Thanks everyone--Nikki, it sounds like you've more than coped. Would be very happy for dd to get degree in biomedical sciences, although am more of a literature person myself Do you use BSL? And do the hearing aids work well for you? The drs. seem to indicate that dd will get an implant (if she qualifies) and likely be 'completely normal' (whatever that is!)but it seems so odd to have so much, err, hardware on a tiny baby. She seems so delicate and it's so hard suddenly having to make decisions about someone else's life--she's our first. Right now the drs are trying to find out the cause. No history of hearing loss, normal preg, not premature... the more they say they need to test her (MRI, CT, renal MRI, eye exams), the more panicked I become, because I know there are lots of syndromes etc. that deafness can be a symptom of. I am driving myself crazy--they need a smiley-type face for that!

Oh, and I have one pair of Jimmy CHoos, bought on sale for half off!

BreeVanDerCampLGJ Tue 10-Jul-07 23:24:23

Hew can hold a telephone conversation on his mobile with a nokia loop. He can use a land line if it is digital, quite as succesfully but you would not linger IYKWIM. We can talk in the dark. One to one over dinner at home is totally brilliant. Out and about the external noise skews the result somewhat but in essence he can still hear me. E.G he will hear me, but will raise his voice to reply not realising that the implant has compensated for the noisy situation.

BreeVanDerCampLGJ Tue 10-Jul-07 23:26:08

Puss

Without aids, he was profoundly/ totally deaf. Where are you ? We are in Surrey, would a meet up help ?

BreeVanDerCampLGJ Tue 10-Jul-07 23:27:10

Laurney

The same applies to you, if you are local or even localish, we would be happy to help.

PussinJimmyChoos Tue 10-Jul-07 23:28:01

Hiya again

No, I don't use BSL - although I can do it. My speech is excellent as my hearing didn't really start to go until I was two years old. I only wear one hearing aid (vanity!) and it does work for me - although I do need to lipread and be tapped on the shoulder if people want my attention. I know it seems odd to have so much 'hardware on a tiny baby' as you put it but really, the early years are so crucial for speech development so its totally in her best interest to get the implant in place so that she can develop and hear speech.

There is no history of hearing loss in my family. No illnesses on my mums part etc etc. I'm quite religous and so have just accepted it as God's will and one of those things that happen. I know its hard to not worry about other causes but please try not to if you can - mine is totally unexplained! My madness however....

You have a pair of Jimmy Choos...

Anyway, feel free to CAT me and I really don't mind helping if I can, even though I haven't had an implant - although as you can see, I'm asking Bree for more info - seems to have changed a lot since I got told about them! lol!!

Thinking of you both and will try to pop back in tomorrow (if DS allows -he's teething and clingy atm!) to see how things are

Sending positive vibes your way and a special XX for DD's precious little ears

Niks

PussinJimmyChoos Tue 10-Jul-07 23:29:37

Bree - really??? Wow.....blimey, that's giving me a little bit of food for thought....(and I'm already carrying baby weight!lol)

Very kind of you re the meet up - am in Bristol though...may CAT you with more questions once I get signed up to the CAT facility - would that be ok? So, does your DH hear like you now - more or less?

BreeVanDerCampLGJ Tue 10-Jul-07 23:31:18

He hears like someone hard of hearing but not deaf IYKWIM.

PussinJimmyChoos Tue 10-Jul-07 23:34:57

Ahhh I see....I imagine he still has selective hearing when it comes to 'honey can you load the washing machine' though

Thanks loads for your help - really nice to meet other people part of the deaf culture

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