Cochlear Implant Assessment...any advice or experience gratefully received!

[kokeshi]

I recently suffered Sudden Profound sensorineural Deafness, which had been wrongly diagnosed for 2 months as glue ear. See previous thread here for how the situation unfolded. It's been really hard to deal with as my whole life has been turned upside down.

Anyway, I have my first appointment with the Cochlear Implant centre tomorrow which I'm apprehensive but hopeful about. I just wanted to hear of anyone else's experiences of going through this process and the outcome. I don't want to get my hopes up too much because I may not be suitable. But I'd like to be prepared as much as possible.

I know SherlockLGJ's DH has had one...would you mind popping on to the thread? And anyone else with children or direct experince much appreciated too.

Many thanks.

Thanks califrau, and for your support on my original thread too

bump

I know this is a wee bit of a specialist area..still hopeful!

How strange, I thought of you as DH and I talked in the dark this morning.

Give me a minute. Will BRB.

Right where have you been referred to ??

Hi again kokeshi!

I've had the workup - twice ie in 2 different countries! Now waiting for a surgery date.

It all happens very slooooooooowly IME.

There are lots of different appointments. Probably you will have most of the following: CT/MRI scan, audiology, SALT, psychologist, ENT surgeon.

The big questions are:

1. Are you medically suitable - "deaf enough", not getting much benefit from hearing aids, fit enough to undergo anaesthetic, reasonably normal anatomy of your inner ear.

2. Are you psychologically suitable - I gather they hardly ever turn people down on this, but CI is a huge challenge emotionally so I think they want to be sure you can cope.

3. And just testing of various things like lipreading so they can compare you before and after the op to judge progress.

I found it frustrating because it was so slow, but also exciting. The people who work on CI teams are very experienced and it's a pleasure to chat to them. They know LOTS more about hearing loss than most health professionals.

Good luck! Will be watching this thread!

Thanks guys! Sherlock, I'm in Scotland so we're travelling down to Crosshouse Hospital in Kilmarnock. They have a very good rep so I'm told.

welliemum...thanks I do feel quite positive about it, no qualms about undergoing process and surgery. I'm having to really work hard at lipreading anyway because well, I have no hearing at all. As you know. I do have the two H.As now (molds still a bit of a problem!), but can hear mimimal "sound" mostly just vibration.

I'm interested in the process. I guess they must be very thorough.

Talking in the dark sherlock...yes, one thing that DP and I have missed...

WellieMum said it all.

If you are implanted you should have a good degree of success as you will have more recent memory of sound.

They sent me a questionnaire about my expectations Sherlock. I know it varies from person to person. How much has your DH benefited? What sort of sounds does he hear? Are they "tinny"? It must have been emotional hearing your kids voices. It's small things like that I miss, rather than the obvious stuff like music.

welliemum, fantastic! What sort of timescale are you looking at?

I've read a lot of the literature, but I think it's more helpful to get personal experiences.

Probably sometime in the next 6 months - but am trying not to think about it - seems like tempting fate!

I've talked to lots of people who've had CI. People's experiences seemed so different. Some of that difference was, I suppose, a purely surgical/technical difference in outcome, but actually the main differences seemed to come from the fact that people had different sorts of lives, different priorities, that sort of thing.

All were positive however.

It's a bit like childbirth I guess - everyone experiences it differently, but if you talk to lots of people you will see some common themes and patterns.

Do you have a local CI users support group? I joined mine (in the SouthWest) and that's where I met lots of CI users and asked them about their experiences.

DH basically said he could not give a stuff about music, he said he had a 2 yr old DS who he had not heard for the longest time and that was important to him.

Because my DH was "newly" deafened, his tests results have been extremely high, but it is also IIRC down to the way the implant and the cochlear get on.

DH's surgeon rang me after the op, and said that he had hopes (turns out they were high but he would not tell me that.)

He said that the implant started to to curl around the cochlear as soon as they put it in.

I know what you mean about tempting fate. I have been trying to get used to being deaf, but I know there's always this thought at the back of my mind that it's not always going to be like this. That's maybe a little dangerous if I can't qualify that, IYSWIM.

I'm not aware of any CI users support groups that are local. There's one in Edinburgh butI'm on the West Coast. That's why I thought of coming on here.

I guess because I haven't met anyone and I'm not totally clued up on how this 6 months will be spent, I don't know the questions to ask! Does that make sense?

Thanks, how long was MrSherlock deafened for, before being implanted?

He was deeeeeeeeeeeeeeeef for about 9 months, he was accepted on to the programme and implanted with in four weeks. BUT I must stress this was pure fluke.

Things I asked people:

1. Are you overall glad you had the op: Resounding YES from everyone.

2. What do voices sound like: Usually, artificial at first, then you get used to it.

3. How has it made a difference: Big variation here, but hearing family is obviously v. important to most people. Being able to hear what's happening behind you, have a conversation while driving.

4. How are you in a noisy situations: Most said they still battled with background noise.

5. What does music sound like (very important to me personally, I used to be a musician): People battled to describe it - as mostly they weren't musicians. The impression I get is that you have to work hard to listen to music but can get some wnjoyment from it.

that's all I can think of at the mo!

lol! I've been told it's about 6 months for the whole work up doodah (at least) so I'm not expecting it next week. That would scare the living shit out of me I think!

Mr Sherlock - I was deaf for many years before being referred. I coped too well, apparently.

WM

He was getting deaf and deafer on sliding scale before that, when I say Deeeeeeeef (family joke) I mean he could hear nothing.

We did slightly circumvent the process by seeing an audiologist privately, so he did a lot of the first steps like the turbo charged HA, so by the time he had exhausted and refered us to S'oton we had ticked some of the boxes.

Cost us about £3k we did not have, but thank God it was worth it in the end.

Oh welliemum, that must be so hard. I've said to my DP recently that at least I wasn't a professional musician. I have trying not to think about music, and it's easier for me to avoid that. Voices of family, kids, conversations are always round about me and it's always in my mind that I'm isolated from them.

If I do go back to working in film it will be important because there's obviously a soundtrack to the visual narrative. Not so important for the cinematographer, but still important to the overall tone and impact of the film. I've been to see a couple of subtitled films at the cinema and I know I'm missing something...

Aha, yes I see Sherlock, similar to me then.

Got to the point where we were actually planning to fund the implant ourselves (ie with money we definitely don't have)... then the NZ govt suddenly found some funding. Big relief.

Some of my delay was also from emigrating of course - had to wait until I had permanent residence here.

I agree, kokeshi, that ultimately you can block music out of your life if you have to, but not the voices of your family.