Cochlear implants

[johncolm]

My daughter was born profoundly deaf last year and has just had surgery to fit a cochlear implant.

Although she's only fifteen months old, I like to plan ahead (my four year old is already asking when he can go diving!) and have read that implants can be affected at certain depths.

Does anyone have any further info?

Cheers


John

[Yazzyfooty]

Hiya
I met and dived with fella who were profoundly deaf on the dive trip his 2 mates tagged along. One was an ex diver, the reason why he was no longer diving was he chose to have a cochlear implant and was forewarned he would have to give up diving.

So for him and I assume others that have the same operation then diving is a no no. :(

[johncolm]

Cheers Yaz, I'm going to speak to the consultant when we go back for switch-on in a couple of weeks time but I was kind of expecting that response as I believe the units don't react too well to pressure.

[PeteM]

Cheers Yaz, I'm going to speak to the consultant when we go back for switch-on in a couple of weeks time but I was kind of expecting that response as I believe the units don't react too well to pressure.

You might also want to ask about flying at the same time as that could be a bigger hindrance to normal life

[starfishdiver]

I met a lady on a Red Sea livaboard last year who had cochlear implants. I don't think anyone had told her you couldn't dive with them in and she seemed perfectly happy. She dived to 35M without any problems.

[johncolm]

You might also want to ask about flying at the same time as that could be a bigger hindrance to normal life

Flying is absolutely fine.

[Maria CM]

Hi John,

I was up for cochlear implants at one stage but decided against them because of the bizarre nature of my hearing loss.

When I asked about diving and implants it did cause quite a lot of confusion and internet research from the consultant etc. THe upshot in the end was that they thought it was OK (apart from ensuring you remove the external part of course).

I suspect it depends on the type fitted???? The one I would have had would have fitted through my cochlear to a magnet inside my skull and the external part from completely external magnet to microphone/transmitter. Therefore any parts that might have beeen afected by pressure would have been safe insidemy head or completely removed for diving.

My undxerstanding is that there is no research on diving with cochlear implants and they had asked that if I did dive with them could I report on what happened!

HTH

Congratulations on getting them for your daughter :)

best wishes,

Maria

[johncolm]

Maria

Thanks for the kind words, we're getting the implant switched on this week which is very exciting for all of us (we're also meeting the Health Minister to try and force bilateral implants as standard in the UK).

I guess by the time she's old enough to dive (if she wants to!) there will hopefully be more research available.

I'm intrigued by the "bizarre" nature of your loss (our daughter's is genetic) although I understand if you want to keep that sort of detail off of a message board!

All the best,

John

[Maria CM]

Hi John,


Ooooohhhh! Just a word of warning. The first time I wore a hearing aid I was very scared by all the noise even with it being set a very low level to start compared to normal hearing. I came out of the fitting centre and a bus's air brakes went off - I thought it was a bomb and, literally, threw myself to the pavement in terror!

I spent the next four hours shaking and hiding in a quiet place, not allowing any speaking or noise because all the noise around me was so terrifying and I knew if I took it out I'd never put it back in again. Even moving papers was appalling sound-wise.

Now, different people have different sensitivities to sound (and ironically it is often people who don't hear well that are most intolerant of loud noises as it physically causes pain earlier than for normal hearing people) and your daughter might not be one of them, but do be aware it can be really scary, and quite painful hearing sound if you are not used to it to start with. Your consultant has gone through all that with you I'm sure, just don't get excited and start really gently.

Sorry, I'm probably being really patronising .... I don't mean to. It is a fabulous chance to stop your daughter feeling isolated potentially in the future and I don't want anyone to be disappointed on the day. It can be really frightening, but others just light up and are entranced straight away on the switch-on.

Where are you? The clinic near me is the Emmeline Centre and although NHS is privately funded in many ways but they do give priority to bilateral implants for children. I do think it is rather unfair that it isn't funded by NHS properly though, same way that I can't hear at all with the hearing aids they supply as they are not advanced enough to deal with my type of loss so I had to spend 4.8K on them last year which I can ill afford!

I have a hereditary degenerative nerve condition (!) although the only other person in my family that had problems was my great nan.

Heard completely fine until I was about 26, then dropped to 30% standard hearing in both ears within the space of two years. It seems to have stabilised now.

My hearing is wierd because I have whole sections of sound (particularly in the higher regions) where I have no hearing at all, so conventional hearing aids are useless as the nerves are completely kaput in that area. Amplify nothing = nothing. Raises up to about 30% on low tones. I can hear vowels as a rule but very few consonants because of where the blank patches are in my hearing

--i- i- -ow I -ea- = this is how I hear (I can hear 'ow')

So supplemented by lip reading where you can identify groups of consonants into a mouth shape (don't know how much you know about this) e.g. 'p', 'b', 'm' lower case sounds all look exactly the same.

So, I 'hear' like a crossword puzzle or one of those rolling combination things.

I hear my vowels, I know where the blank spaces are, I consider my lip reading as to what could fit into each gap and make sense, sometimes replaying and readjusting because it stops fitting context part way through.
Absolutely exhausting ... and that is in best case scenario on 1-1 without peoples faces moving about.

The aids I've got now have a program where the aid physically shifts sounds from a range you can't hear into one that you can. It does sound wierd - everything is all 'shushy' but it is the first time I have heard an 's' in years so I guess it will take a year or two to get used to it.

I turned down the implants in the end because it would probably have destroyed what residual hearing I have left and I want to stand a chance of being able to hear if my children are having a crisis during the night etc etc when the implants wouldn't be being worn and therefore being totally deaf.

So there you go, that's me. Irony is other people often don't notice because I am a star at hiding it, but am always accused of ignoring people when they speak to me and I'm not facing them to notice the speech.

best wishes and good luck for a smooth switch-on - give your daughter a big hug from me.


Maria

p.s. good thing is though that I am not constantly being glared at by motorists for stepping out because I can't hear them coming now:eek:

p.p.s. do let me know how you get on, both with switch-on and the health minister (well done on that by the way)

[ChristianG]

good thing is though that I am not constantly being glared at by motorists for stepping out because I can't hear them coming now:eek:
Maria,

I'm aware of your condition, as you know. You're not aware though that I suffer from tinnitus which, as it does, is getting increasingly worse. Now that is a noise problem, "singing" in the ears for those unaware. I am also very aware that a good friend of mine has a wife who is profoundly deaf, again a noise problem, to the extent that she refuses to go to places with lots of people about, also a noise problem. Like most such, I hate noise. Noise makes it difficult for me to hear and I hate to think what it does to those as affected by this condition as you are.

I say this only in support of yourself and others, including a certain daughter, with this type of condition. Like most such, it is plain horrible for the victims.

[johncolm]

Maria

A great post; your situation sounds similar to a lady I met no too long ago. To be honest, deafness is a condition we knew nothing about until Hope was born 18 months ago; our son is hearing and there's no history of deafness in the family. Hope was just a wee bit unlucky that her mum and dad both belong to the 3% of the population with the recessive Connexin 26 gene (and we only found this out about three months ago!), and she then fell foul of the one-in-four chance that she'd have a hearing loss.

We live in Glasgow and Hope had her implant switched on on Friday. Although she's been wearing hearing aids for 15 months (since she was 3 months, a real veteran!) she still got upset when her implant was switched on. However over the last few days she has been brilliant with it. We do, though, have a long road ahead although I'm glad to say we have been accepted for regular sessions with Auditory Verbal Therapy in Oxford which will bring her listening and speech along.

We're still campaigning for bilateral implants (you can read more here http://www.theherald.co.uk/search/display.var.2193533.0.family_battles_nhs_to_help_t heir_child_hear.php) and the next step is the Health Minister next month. I'll keep you posted.

Thanks again for taking all the time to post and I hope the hearing aids continue to give you a lot of benefit.

[Maria CM]

Hi Christian,

You have my sympathy. Tinnitus can be a real pain. Does yours sound the same all the time or does it do different things?

Mine does a major assortment from grasshoppers to peeping noises and morse code. I could be convinced it is alien radio comms really. Also really irritatingly mimics and echoes noises I've heard. Used to drive me round the bend at work when you had to listen for the alarm to stop after pressing the button to exit the building. If you let it go too soon it sent a silent alarm to the police, same if you held it too long. My tinnitus used to make it complete guesswork as to whether it had stopped or not as I would hear it for at least half an hour afterwards!

best wishes,

Maria

[Maria CM]

Hi John,

How are things going with your daughters implants? Is she finding them better than the hearing aids.

Glad all is going so well.

You never know, if you have to wait for a second one for her the technology may have improved dramatically and make her quality of hearing better. The private top-end hearing aid market shows fantastic improvements year on year. Sadly the NHS does not tend to follow suit.:(

best wishes,

Maria

[johncolm]

It's all going well, thanks. We're really just trying to teach her what various sounds are, given that hearing kids have had an 18 month start on her in terms of making sense of the hundreds of different noises surrounding them.

So we're knocking before coming into a room, for example, so that we can say 'Listen! There's someone at the door!' and Hope can then associate the knocking sound with the door. It's going to be a long process but she's still only wee; we'd be hopeful that she'll have age appropriate language by the time she's around four. Hopefully, the Health Minister will see sense regarding bilaterals which we believe will help her enormously.

[MartinJ]

My daughter was born profoundly deaf last year and has just had surgery to fit a cochlear implant.

Although she's only fifteen months old, I like to plan ahead (my four year old is already asking when he can go diving!) and have read that implants can be affected at certain depths.

Does anyone have any further info?

Cheers


John


John,

I've posted the same answer on several forum posts before but it always works for me!! Just give one of the local dive docs a call (or London Dive Chamber). Dive doctors are all inariably divers and will give you some basic advice over the phone. I find my local dive doc great. He is a great chap and if busy will phone you back and answer my diving questions.....wish my own doctor was so accomodating and easy to get hold of!

Obviously they cant give defacto advice over the phone for everything without seeing a patient but in your case I'm sure your questions could be answered.

God luck and glad everything is ok.

Oh and it sounds like you are organising your own bankrupcy later in life :-)

Martin

[johncolm]

Cheers Martin

I've emailed LDC and will see what they say. BTW, the bankruptcy process began the minute I put a reg in for the first time, the kids are just accelerating it! ;)

[Maria CM]

Hi John,

How is it progressing for your daughter?

best wishes,

Maria

[johncolm]

Hi John,

How is it progressing for your daughter?

best wishes,

Maria

Hi Maria

All going really well; she's been switched on for about 2 months now and is very responsive to sound, it's making a big difference and we're hoping that her speech will start to really pick up now.

We had a meeting with the Health Minister last week which went really well and had some good news coverage, with Hope making her TV debut at the age of 18 months! Anyway, the Minister has said on camera that if the final NICE guidelines recommend bilaterals for England and Wales, she will not see Scottish kids go without which is great news.

As an aside, I ran the Glasgow Half Marathon last month (my first, at 39!) in aid of NDCS and managed to raise £2k in the process.

Anyway, we're all looking forward to Sharm next month, my four year old is about to receive his first set of mask, snorkel and fins. :D

All well with you?

[Maria CM]

Hi John,

All good news!!!:D I'm sure her speech will pick up soon. Mind you, my 3.5 year old's speech is pretty dodgy and he can hear fine!

When my oldest was four years old ne went snorkelling off a dayboat from Sharm in 18m and frightened the life out of me my going faster than I could keep up:eek: I have since decided that I'm going to get a buddy line!!!

best wishes,

Maria

[johncolm]

Hi John,

All good news!!!:D I'm sure her speech will pick up soon. Mind you, my 3.5 year old's speech is pretty dodgy and he can hear fine!

When my oldest was four years old ne went snorkelling off a dayboat from Sharm in 18m and frightened the life out of me my going faster than I could keep up:eek: I have since decided that I'm going to get a buddy line!!!

best wishes,

Maria

She said her brother's name last night :eek: My wife was in tears!

[Maria CM]

She said her brother's name last night :eek: My wife was in tears!

Oh bless!:) You've just set me off on having a watery moment too...

give her a big kiss and hug from me....

best wishes,

Maria

[johncolm]

Oh bless!:) You've just set me off on having a watery moment too...

give her a big kiss and hug from me....

best wishes,

Maria

Mind you, my wife's got the hump because she can say 'Upsy Daisy' and 'Noddy' now, but not 'mummy'. :D

[johncolm]

A wee update, Maria; Scotland is now following suit with England & Wales meaning that all kids, where appropriate, will get bilateral implants. We're over the moon! Here's my wife and daughter on Friday's news:

http://news.bbc.co.uk/1/hi/scotland/7875350.stm

[Maria CM]

That is fantastic news John! :D :D

You must be so pleased. And.... a perfectly gorgeous reason for working so hard on it. :) Well done to you.

As soon as I have worked out why my speakers are not working I'll seee if I can hear it too.

Many congratulations.

best wishes,

Maria

[johncolm]

We are delighted! And yes, I think they both scrubbed up well for the telly!

All the best,

John

[Maria CM]

They did indeed:) :) :)

best wishes,

maria