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Original poster

Cochlear Implants?????

104 replies

Laurney · 10/07/2007 17:44

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.

OP posts:
BreeVanDerCampLGJ · 10/07/2007 23:39

No..........for load the washing machine, I make sure I have his full attention.

It has made such a change to DS's life as well. He was 2 when DH was implanted, prior to that he had no real relationship with DH. He loved him and vice versa, but now I take great delight in being excluded because the boys are up to something.

CalifrauniusFudge · 10/07/2007 23:40

This reply has been deleted

Message withdrawn at poster's request.

PussinJimmyChoos · 10/07/2007 23:41

Blimey - sorry to hear it affected you like that. But then, I do think it can be worse for the people standing by than the people actually going through it iyswim? My mum was devasted when I was diagnosed but as I was so young, I wasn't fazed at all! I'm lucky, I have a really good outlook on my deafness now and that helps a lot! DH is brilliant with it...except when the teletext subtitles get in the way of some hotchicks arse on a C5 movie or something!! Grr!!!

Original poster
Laurney · 10/07/2007 23:46

Bree, thanks for the link. Honestly, I thought that over the past 6 weeks I had read every bit of info on implants ever posted on the internet, and yet somehow I missed the most obvious one . Jimmy, we will def get her the implant if she qualifies, I know time is of the essence. I've been reading about the technology and it's amazing, check out www.bionicear.com It's just that I keep picturing her trying to eat it or drooling all over it or something. Also, I keep reading about all of the speech therapy required, but no one has actually elaborated on what that means for a 1-y-o. (Not that it matters, if it took 23 hours a day 7 days a week I would do it, I'm just curious.)

OP posts:
BreeVanDerCampLGJ · 10/07/2007 23:47

Laurney

Where are you ?

BreeVanDerCampLGJ · 10/07/2007 23:49

The only implant worth having is a Cochlear.

Here

PussinJimmyChoos · 10/07/2007 23:52

I'm trying to remember the speech therapy I had...was once a week in school with hippie lentil weaver type....

Mind you, that was yonks ago....the thing is, because the implant will hopefully be in place just as her speech is starting to develop, she won't be having to re-learn how to hear or how things will be pronounced as its all new to her anyway, so that may make it a little less intense. Always worth ringing the RNID to ask though to put your mind at rest?

I've seen a colleague's cochlear implant and its pretty robust so I think from a kids point of view it will be ok - lots of children have them so I think they have probably factored this into the design. I've had more than my fair share of hearing aid hiccups - including one memorable soak in the bath with it in....you only do it the once I tell you! Had to remove the case and blow dry the insides - worked a treat though Makes good dinner party humour as well

Hope this has helped a bit? If ever you are in Bristol, you are very welcome to swing by for a chat, look at my hearing aid etc (its clean!) lol!

Niks

BreeVanDerCampLGJ · 10/07/2007 23:54

Puss

Please investigate it. Discard it by all means along the way,but at the very least investigate it.

Original poster
Laurney · 10/07/2007 23:59

Also, I swore I wasn't going to tell this story again, but when dd was diagnosed, the technician or whatever she was was horrible. There were a number of things that we thought were unorganized or weird about the first time we went for an ABR (after dd failed newborn OAE) but chalked it up to our sensitivity and shock at the diagnosis. (I'll spare you the details, but they said, 'Your dd has a 95% chance of being severely deaf, we'll see you in a few weeks to be sure.' No info, no support, nothing. (I had never even heard of cochlear implants.) The tech actually called three daysthree LONG dayslater to say, 'Oh, forgot to give you info, sorry.') Then after dd failed the second ABR test three weeks later and we were talking about hearing aids, the same technician said, 'You know, with this newborn hearing test, we get false positive after false positive referred to us. It's lovely to find one who really IS deaf.' Now, I get what she means, I guess, but that's a comment best reserved for your NHS colleagues, not the very upset parents of a child you just diagnosed as profoundly deaf. She went on to express her excitement at getting to treat a newborn, which she had apparently never done before, and we went on to take dd to a different hospital!

OP posts:
Original poster
Laurney · 11/07/2007 00:04

I've heard about that Nucleus one--the aud ped talked about it and recommended it. It's so hard to know which is the best, but he said when the time comes he'll help us choose, that things may develop over the year or whatever.

Oh, and I'm in London!

OP posts:
PussinJimmyChoos · 11/07/2007 00:06

Omg!!! what utter twats!!! Am so so sorry to hear what a bad experience you had!

The requirement to be an audiologist these days is an MSc in Audiology and, as far as I know, its pretty much the technical aspect of it rather than the emotional aspect of it, so that's probably what has happened here but its inexcusable and perhaps when you feel a bit more up to it, you should let them know this? I've met some Audiologists shouting at people and I'm like don't shout! Its clarity not volume that counts! Twunts!

My husband's colleague is an audiologist though - and a nice one! She was the one that tested DS to make sure his hearing was ok and she was so lovely - I can ask DH to see if she can provide any websites or info for you - oh and by the way - DS's hearing is fine - so just goes to show that deaf parents don't necessarily have deaf children, so I hope that reassures you a bit more

PussinJimmyChoos · 11/07/2007 00:15

I have to go to bed now - but really hope you feel a bit brighter. Will check back tomorrow hopefully...

Take care and chin up

Niks

Original poster
Laurney · 11/07/2007 00:16

Jimmy, I'm so glad you think it's bad tooit's hard to gauge because when I've repeated the story to friends and family they are mortified, but I think they would agree with anything I said if they thought it would make me feel better. DH was upset, though, and he is very laid back. We actually ended up taking dd to a private hospital here in London (we persuaded our insurance to cover initial visitsfingers crossed they will keep going) and we've had a great experience so far, though we are in early stages. The technician there did an OAE (not sure why, but whatevs, it made me happy)and when dd failed she said, 'Oh, don't worry. There's so much we can do, so many ways to help with hearing aids, implants, therapy, etc. that dd will be fine. Why, I just saw a little 3-y-o girl with implants in here who wouldn't STOP talking'. Night and day, I tell you.

OP posts:
Original poster
Laurney · 11/07/2007 00:17

Ha ha, wrote Jimmy instead of Nikki. Choos on the brain...

OP posts:
kokeshi · 11/07/2007 03:20

Hi Laurney, I lost my hearing last year over the course of about 7 weeks with no-one able to tell me why.

I was offered an implant fairly quickly, operated on the 17th April this year and switched on 17th May.

I can honestly say it has absolutely turned my life around, and is getting better all the time.

If you want to read the whole saga, have a look at these links here.

The start

Lots of great advice

Shared experiences

Switch on and progress

It was quite a traumatic time for me, but the implant is so much better than I could ever have allowed myself to imagine.

The implant centre I go to (in Scotland) specialises in implanting children and they have a whole wall photographs of young implantees. It's really emotional when you see it.

Please feel free to ask me anything, I'd love to help if I can.

Quiddaitch · 11/07/2007 03:22

kokeshi! why are you not in bed? i keep having to remind you that you're in the Northern Hemisphere...
and where's my mirto?

Quiddaitch · 11/07/2007 03:29

sorry laurney, hijack over. i don't have any experience of deafness or deaf issues but that audiologist was a twunt, definitely. night night.

kokeshi · 11/07/2007 03:46

Ah! Is that your good self Aitch? What are you adorned with?

OK my plan went down the swanny when I realised that Ryanair (the fly bastards ) have a maximum baggage allowance of 15kg. What a fecking nightmare at Prestwick - the whole check in queue frantically discarding surplus Y-fronts, flips flops etc.

I nearly bought you a bottle at Alghero airport before our flight home (this problem was pre-occupying me all the way through the holiday incidentally) to put in my hand-luggage but would have had to leave it at Stanstead customs due to their new security measures.

So, I apologise but you are in good company -no-one got a souvenir heavier than a cork postcard .

If I return to Sardinia I will dedicate a Kg of space in my luggage just for you. Sorry!

I'm up becasue I'm giving my sister a lift to a film set at 5am, but I have been trying to be more sensible of late. Hey, what about you? How's life? Have you been dedicating column inches to our local hero?

Quiddaitch · 11/07/2007 04:01

i was interviewing a couple of deeply pleasant film-y people today actually. they've just got a distribution deal with sony so they're well chuffed. looking for a new PA if you know anyone looking for an (i'm guessing not hugely-renumerated) start.
you'll have to remind me who our local hero is, though... i'm too tired to remember, this place is full of them.
thanks for trying on the mirto front, that was really sweet of you. thank god you hadn't bought it before the mass flip-flop jettison. [horrified] you had a great time, i take it?

Quiddaitch · 11/07/2007 04:02

and at the idea that it was pre-occupying you in any sense. i bet they sell it in bloody Peckhams...

kokeshi · 11/07/2007 04:13

Old smeato of course!

I'm usually surprised when someone tells me I don't have to pay them for the privilege of working on their production, never mind being remunerated!

That sounds exciting about the distribution deal, Scotland really needs all the help it can get. I'm thinking of actively trying to get involved in bigger projects but wanted to see how good a result I got with the implant. I can't believe it's still improving.

I met a reporter from Scotland Today (doing an Inside Scotland report about friend's Equine therapy group in Maryhill) and she was interested in doing a wee thing about me, sudden deafness and Cochlear Implants. Scary.

Sardinia was beautiful, so much more to it than I had imagined. Such a rich history.

kokeshi · 11/07/2007 04:16

Oh, not pre-occupying me in a weird stalkerish way...I just like to keep my promises!

Quiddaitch · 11/07/2007 04:23

no no nooooo! if you're talking to the press you need to be talking to me, love. i'd love to do something on your experiences, in all seriousness. (not tabloid, i hardly need add). and then you can talk to the tv people...
as i say, if you know anyone who wants to be a PA i believe they're looking for someone right now. it'd be a good job i reckon, they're going into pre-production on a new script and i think have funding secured thanks to the other deal.
aaah, the smeatonator. i'm starting to feel a bit sorry for the other guy who had his leg broken, actually. he's rather missed out on the public adulation bit.
night night

kokeshi · 11/07/2007 04:34

What's the film called? Do they have contact details etc? There's a website called mandy.com that's an international film and TV job resource that they might advertise on.

I prefer the excitement of the film set, rather then the production office. Hmmm, I wonder if they're looking for anyone in the camera dept?

Best get off and pick up sis. Good to speak to you again, and perplexed in all this interest in little ol me.

Pixiefish · 11/07/2007 07:42

Dh is partially deaf but only uses one hearing aid. This is because he takes the other one off to use the phone and forgets where he's put it so he's taken to using only one.

I taught two girls who were deaf, one had a cochlear implant and one didn't. Both were about the same age. Both had classroom assistants who signed for them, both did BSL, and tbh both had similar speech problems.

The one with the implant did have trouble with it although I can't rememebr what. i know when she started with us we had someone come talk to us as it was important that she didn't get hit on the head or anything and we were also told of the risks of having the implant put in which was why the other girl's parents had decided against it.