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.

Yeah, I thought so DT but didn't want to repeat what you'd posted

I was just hijacking another thread with this, so I thought I'd post it on here too. I'm going to the staying over at the implant centre tonight for the full CI hearing assessments tomorrow.

I had the results of my first MRI/CT scan back today from my own consultant. My brain and aural nerves show normal morphology, so that's a huge relief. I believe they'll be doing extensive hearing and lipreading tests tomorrow to guage where I'm at.

My consultant thinks my hearing loss was either auto-immune of viral in origin. Apparently the anti-cochlear antibody test which came back as negative is a poor indicator.

Funnily enough, the other male consultant thinks it's genetic. So I'm trying to research it myself, natch.

Good vibes very much appreciated

or viral

Sorry - missed this!

How did it go?

I was told, "You have a profound acquired idiopathic sensorineural hearing loss"..

In English this means " You can't hear. We don't know why."

Oh glad I checked this welliemum, don't suppose you're around? I wish the "threads I'm on" section would show if messages from others had been posted, it seems rude if I don't answer but never think to search on my own name!

After trawling the internet, I believe I have the same as you. There are only a couple of references to it in all the scientific papers that I can find. Don't suppose you have had any luck researching it? How long did your hearing take to go?

The Cochlear Implant Assessment was quite hard going, but I think, quite positive? I couldn't lipread the stupid man on the screen at all, and I think I may have come across a bit wobbly on the personality tests (they didn't qualify the anxious/depressed statements, I mean of course I'm more anxious now...my whole life changed in a matter of weeks!). The audiologiest even hinted that the CI (if I'm suitable) may not be as far off as 6-12 months. Scary!

How are you doing yourself welliemum? I often think of you when I'm in one of my defeatest moods, you know as a positive example of living a fulfilling life with profound acquired deafness.

I have a meeting with one of my actor friends tomorrow. He won't hear of it when I'm talking about giving up working in film. It's great for the confidence, especially when I try to work out if I've become a different person in all of this.

Eeek, just found this, sorry kokeshi!

How are you doing? Have you had any feedback from them? I think being anxious/depressed is exactly what they will expect from someone in your situation by the way. You'd be odd if you weren't upset!

We've just had a call from the CI team saying can they schedule me for surgery on 29 March! So I'm trying to get my head around that. Happy to report my experience if you're interested.

As far as causes of hearing loss goes: I don't think it's very well understood. As I understand it, the most likely explanation for losing your hearing in adulthood is a "2 hit" theory, ie you're born with a genetic vulnerability, but have good hearing until some trigger event occurs, maybe a viral infection or an auto-immune process.

Anyway, I haven't paid much attention to finding the cause - it sounds weird, but I just don't find that very interesting. Whereas chatting to other deaf people and working out how to do things in daily life strikes me as much more interesting and useful too.

at being a positive example - that's funny! I'm really not a role-model-type person - I just get on with it because I have to.

You asked how long it took for my hearing to go: a bit complicated. I lost a lot of hearing very quickly (couple of months) and then the rest very slowly (over years). But what I actually experienced was quite different.

When my hearing first went, I was completely at sea. I couldn't work out what anyone was saying - it was just a nightmare. Then I adjusted, learned to lipread, learned all the coping skills - and my hearing got better! Not my actual hearing of course, but my ability to function. I worked in a very demanding job for years, adjusting bit by bit as my hearing got worse.

So you see it's not what your audiogram says that determines how you get on, it all about coping strategies. If I now had the hearing level I had when I first lost my hearing, I'd regard myself as a hearing person! But at the time I felt (and was) very very deaf and a fish out of water.

Based on my experience, I'd say don't rule out any job until you've had a chance to adjust. IME you can do pretty much anything if you're deaf, but some things are more trouble than they're worth - however, only you can make that call.

OK, will stop rambling now - hope you're OK and have some good support - I know it's hard.

Hiya

Thought I'd pop into this thread as I've done Biomedical Science at uni (although don't work in the field, but hubby does) and I'm profoundly deaf due to cochlear damage. Have never been assessed for cochlear implant though as am quite scared and comfortable and used to the hearing I've got - I don't like my ears being messed with - have had tooo many years of it!

Anyway, happy to help with any questions re deafness, coping etc and the distinct advantages of having a number of alerting devices that all vibrate

Niks

Hi Niks

That's so interesting! I'm very used to being deaf but I can't wait to have a CI. I guess that's means I'm not as well-adjusted as I thought I was....

I second the vibrating things suggestion

Hi kokeshi, hope you don't mind me posting here, just saw the thread title and guessed it might be you. From my brief reading it sounds as though the news is positive if pretty damn scary. Am really with you all the way honey and hope things go exactly as you want them, and also that you are coping okay tonight. {{{{hugs}}}}

And i know it probably sounds trite, but let the process happen, see how things unfold and try to be confident that whatever the outcome, it will be what's right for you (even if it doesn't seem so at the time - that has happened to me so often in life, sometimes in little things and sometimes in really big, profound ways. Awful things that I saw as a tragedy at the time, ultimately turned out to be blessings in disguise).

Sorry I hope that doesn't offend or sound like load of old babbly bullshit, but just came accross a couple of brilliant quotes the other day which I thought of as I read this thread

Don't push the river (it flows by itself).
When it starts to rain, let it.

HTH, really hanging in for you, and sending you lots of love.

Welliemum,

I think its great you are willing to have a CI...I just go cold at thought of it...I'm the one thats not well adjusted! Mind you, if I found a ENT doctor that looked like Kovac from ER, I may change my mind lol

Let me know how you get on - really interested to see how other people have found CI

Hmm, the only ENT surgeon I've met that looked like someone famous, looked remarkably like Angus Fraser (England fast bowler from a few years back).

I'm guessing this is not going to have you leaping onto the theatre trolley?

Err....maybe not!

I get so arsey when I'm at the ENT....had sooo many years of it! DS has his first proper audiology appt on Friday....my condition isn't congenetial and there is no sign that he has any problems - in fact, he hears people walking into a room and alerts me as he turns to see them (and he's only 10months, bless his cotton babygros) but I'm still feeling sick and emotional about it all cos every appt I had ended with well, your hearings got worse... Keep your fingers crossed for me and meanwhile, a funny story for you all.....

I got in the bath one day....bath water still running....laid down with a contented sigh and realised I could HEAR the water trickling into the bath!! For a split second I was like praise the Lord its a miracle and then common sense kicked in and I felt my ears....hearing aids accidently left in!! Cue mad dash out of the bath, taking case covers off and blow drying the insides!!!!

Worked though

PS and why do hearing aids always 'whistle' during sex???!!!

Welliemum - good luck on the 29th!

Nikki - interesting to read about the "whistling" at important moments. I was wondering about it for my son. He's only 7 now but I worry about lots of things, including this. He's just had a CI a month ago, so perhaps he'll use that only by the time he's old enough for sex.

Kokeshi - good luck with everything.

Oh, I long ago realised that hearing aids are under the control of evil gremlins who will ensure that they whistle whenever you least need whistling!

And they will suddenly! cause the batteries to run down just when you're in the middle of an important conversation. Guaranteed!

Cristina, has your son been switched on yet? Hope it's a big success.

Fingers crossed for the ENT appointment nikki.

at levitating out of the bath after happily listening to the tap running - I've done that too!

Hi Welliemum - Dominic's CI was switched on two weeks ago. He can hear a few sounds distinclty through the CI alone and turns to his name reliably. Progress is quite slow because he only gets to wear the CI only for one hour a day. The rest of the time it's in addition to his hearing aid in the other ear so he doesn't focus so much on the CI ear. But there's too much at stake education-wise (he's 7) for us to force him to use just the CI, he needs to hear and understand most of the day. We feel positive so far. I think we secretly hoped his case will be one of those miraculous ones where he talks on the mobile phone 6 hours after switch-on (like Rush limbaugh) but we'll wait patiently for things to happen in due course.

That sounds pretty good actually Cristina. I can see that taking it slowly is the right thing to do but I'm sure in your shoes I'd be really impatient!

Just a quick bump in case kokeshi stops by!

Cristina

Didn't mean to worry you about DS when he gets older....the hearing aids can always be taken out during the ahem strategic moments! I've always found it funny rather than a problem. Mind you, did I want to clobber DH when he moaned my hearing aid was whistling during my contractions??!!!! Lucky he still has his nads!!

Just to reasuure you, I was born in 76 when there were hardly any facilities for deaf children or much understanding..my parents decided against sending me to a boarding school for the deaf as couldn't bear to be parted from me. I went to a mainstream primary and junior school and then a comprehensive with a hearing unit attached. For most of my childhood, there were no subtitles on TV, no mobile phones for texting or DVDs with subtitles but its all worked out and now O2 shareholders are going on holiday with the profit from my texting addiction

I know by time your son is older, the technology will be even more amazing!! I'm not trying to belittle your worries in any way, they are very real and I would like to just try and reassure you. My parents worried buckets over me but I managed to go to University, get a Biomedical Science degree and now I'm happily married with a 10mth old DS and lots of lovely equipment that vibrates!

Aww, that's very sweet of you, Nikki. I worry less as time goes on but there were days, weeks, months at the beginning when all I could think of was "Will he ever hear this? Will he ever hear that?" You know, little things, not just birds singing in the early morning, but some trivial ones, like the street cleaners in the early morning or having insomnia and being bothered by the sound of the fridge. I'm coming to terms with this, I know in the grand scheme of things such experiences don't count for much, but it was tough getting to this stage.

I think you have done really well to get to that stage. It took my mum a long time to come to terms with my deafness - she cried all the way home from the hopsital when I was diagnosed and even to this day, its still raw at times. She cried when I told her about DS's routine audiology appt because even talking about it brought back bad memories for her, so I really can empathise with it all.

On a brighter note, there are sooo many positive aspects I've found to being deaf - pre DS I used to get the most perfect nights sleep - people would be staggering into Uni bleary eyed and all did you hear that thunder last night and I would be bright eyed and bushy tailed and say nope, not a bit of it! and if my hubby snores (I don't know if he does!!) doesn't bother me a bit and bin men and cars outside my bedroom window - nope....zzzzzzz!! That's why I'm so youthful looking!! lol!

oooooooh, I just found this! Thanks all for your messages!

welliemum, that's fantastic news about your CI date. Please,please, I would love a running commentary about your progress.

I definitely second what you say about adjusting to deafness, I think I'm progressing a little every day and things that would have scared the shit out of me 3 months ago (almost everything) are becoming par for the course.

I think I've been lucky that my friends and family have been really supportive and I've also met some really great people who're living happy and fulfilled lives - oh and they're deaf

Christina, I hope Dominic continues to progress with his Implant, he must be a really brave little lad. I understand about his education as well, what a lot he has to take on at his age.

Nikki, thanks for your posts too, I've met another person who says that she's lived with her deafness for so long that if someone offered her it back now, she'd refuse. I can't get my head round that but I think I'm a bit too close to living as a hearing person...it is just a pain in the a*se
for me. Upside I do agree about sleeping - had my bathroom ripped out and re-done last week...plumber, plasterer, tilers, electrician, joiner all banging and clattering away as I dozed on the couch...ah bliss!

Cubby thanks for your kind words, and for letting me know that there was messages on this thread. I hadn't thought to look!