Cochlear implants - any experiences?

[PavlovtheCat]

My MIL is going to have a cochlear implant put in next week and i wanted to know if anyone has any experiences about it?

Apparantly she is not going to have it 'turned on' til beginning of March. What does it entail, is the surgery invasive, how will she feel afterwards, what might we need to know about it? What is the success rate? what happens if not successful? how well might she be able to hear if/when she does? Anything else we need to know.

She lives in USA, so talking to her is hard at the best of times. She is having it in the ear where she has virtually no hearing at all and has very limited hearing in her other ear, so we are accepting email is the way to go.

She is having the Nucleaus 5 implant if that means anything?

Know nothing at all but have found this for you...see if it helps xx

Thank you for the link, much appreciated. We have some info on it, what they want us to know (or her to know in order to get it done! seeing it is costing a fortune, insurance are paying luckily) but i guess we want to know what to expect, ie the worst, the things they don't say on the sites that sell the product, the real life issues she might face and we can help her to practice using it, if at all.

I think i am worried as she is 76 and not sure her brain will be able to make the switch easily/at all?

I don't know anything about them in later life.

My DN has bilaterals fitted at 16 months and is doing great.
It is apparently a totally different way of hearing though and would be a case of relearning
how to hear.

Surgery is invasive implants, Dn recovered quickly, but it is a ga and she had to have some hair shaved

thanks for that, it is the re-learning to hear i think i am most worried about, given her age. I know the fact she is having this done means she is mostly deaf but she manages to hear a very little, somehow. This complete loss would be devestating for her if she does not get something back.

I am also a little concerned about the op too, as i think its a GA for her too, and worried about her age, and recovery. She is a fit and healthy woman though (climbed mount Kilimanjaro at 73!)

I don't have them myself (wear bilateral aids) but people I know who have had them found they took a time to get used to, especially when having them turned on (may appear 'loud' and tuned) but they they have really improved their quality of life, sounds that they can hear - even if not hear speech on the phone to hear traffic improves independance and safety, to hear the wind/animals gives extra dimension to life and so on. Speech tends to improve, although younger people tend to need some speech therapy to help them adjust.

Hope it goes well for her.

oh, would be great for her to potentially hear sounds like wildlife. She has been deaf for most of her adult life, but has had some hearing in both ears, it has gradually deteriorated through the years, and she has had enough hearing to get by on lipreading (unofficially) and guesswork. She relied heavily on her DH, and now he has gone her hearing has plummeted. She has hearing aids which she has always struggled to use, she forgets the remote, or forgets to turn it on (so she says ). But clearly the little she has, has now disappeared completely on one side, and minimal on the other. This christmas just gone she was mostly in a little bubble with us all busying around her and this has spurred her into action, despite it being on the cards for years, it has not got to the stage i guess where there is absolutely nothing to lose now.

there was a poster called kokeshi ages ago who had cochlear implants but haven't seen her around for a while, I'll see if I can find the thread. She was quite young though and her hearing loss was fairly recent so not quite like your MIL.

here you go There was another poster called welliemum as well who IIRC had the same op. Very old threads though!

Thank you i shall go read through

PavlovtheCat - it might be your MIL needs her hearing aid reassessing after the Cochlear implant. People I know with an Implant find they have different needs from the other ear.

Also there are some great digital hearing aids out that don't involve remotes or reasons to not use them I use Phonak Vaida UP's, but different aids suit different losses.

Keziah i thank you, i will make sure she looks into them. I know hear current aids are digital, and wonder if the loss of remote control is an excuse, as she gets so so tired by the end of the day.

Hi,
yes it sounds likely that loss of remote is an excuse. However, as I have word aids since I child I am used to them. I notice people at the audiology department who are older don't always get everything explained to them, don't always know when moulds/tubing need replacing etc - so the aids themselves become less useful and possible more feedback (whistling noises) and painful which can be totally avoided.

I guess in the USA, it might be different with private care. But always worth getting them reviewed and checked.

Remotes are difficult and although they are an extra to some digital aids I would not have thought it was compulsory on aids now. Some hearing aids never need changing (great for my 91 yr old Gran!) but mine have only a few controls on the BTE (behind the ear aid, as am too deaf for ones that go hidden in ear) as so much is automatic.

Hope it goes well for you all!

She gets feedback all the time with her aids. She says it is because she has not inserted it properly. She has private healthcare and it does seem they have replaced her aids and do so regularly, but i am not sure how thoroughly they have talked to her about everything, other than giving her a disk to look at, and how thoroughly they have explained the other options to her. But this is a very expensive operation for her insurance company so i am guessing, from a financial perspective, they would have had to explored other, cheaper options first...but i do not know for sure.

She has it put in tomorrow, so i shall take the luck you send and make sure she gets lots!

Hi Pavlov-Good luck to her.

I am a teacher of the deaf so know a fair bit about CIs as many of my pupils have them.

The surgery for the Nucleus 5 is supposed to be less invasive and quicker than previous Nucleus models as it's so slim. I had a pupil who had one implanted (his second- he already has one in the other ear)a few weeks ago and he sailed through. A bit of hair is usually shaved behind the ear and a small neat scar which is easily covered by the hair and not noticeable when it grows back.

It might be a bit sore to start with but my pupils have told me that a bit of calpol seems to keep pain to a minimum (LOL). The remote for the Nucleus 5 is an added bonus but not necessary to have with you all the time. The speech processor will have a few programmes that are accessible by the switch on the back. My pupil doesn't bring his remote to school for example.

The switch on usually starts about three weeks after the initial implantation. They start it at quite a low volume with a few channels switched on (there are 22 in total) so it's not too much of a shock (which it can be for some who have been profoundly deaf for a long time.)There will usually be a few tune-ups/ programming appointments a week until full switch on is arrived at after about three to four weeks. (At least this is what happens for kids- might be different for adults.)

Depending on how long she has been deaf for it might take some while for her to get used to listening throught the implant. It is not like "normal" hearing and can sound very mechanical to start with although she should have access to all the frequencies needed to hear speech/ sounds in the environment.

I do not know a single child (or adult as some of my deaf pupils have deaf parents who have had implants fitted) who have not benefitted in some way.

Hope your MIL finds it equally useful. Good luck to her.

Thanks brigit - she had it done yesterday, spoke to BIL who is with her, she had just come around from general, given some anti sickness drugs and she went back to sleep. The operation itself went smoothly with no reported problems, so it will be time now, she gets it switched on in March some time, so that makes sense with what you said about waiting 3 weeks to switch it on. So we shall sit tight and see what happens over the next few months.

Are telephone conversations possible with the CI? Seeing as DH is overseas from her, he would love to be able to have a conversation on the phone, even a basic one would be good.

Just seen this, my 2 year old has an N5 CI and is doing brilliantly. She's able to hear on the phone and recognise the different voices, albeit her language skills are still limited.

Switch on is so exciting in children, there's loads of videos on you tube. Adults take a bit longer to get used to the sound; at first its very mechanical but then with practice the brain adjusts. My daughter 9 mths post implant hears as well as I do (normal hearing). Time and therapy are both key.

There's a UK adult CI yahoo group and loads in the US she should go online for support

I know some CI users who can use the phone. SOme find it easier than others. Glad it went well.

hehe, DH just spoke to her on the phone and then to his brother who is with her. Her hearing is exactly the same with her ear 'switched off' as before! They had thought she had 'some' hearing in it, but it appears she had none whatsoever as her hearing is no different, she does not feel any different either, but was expecting to have less hearing than normal (which is little as it is) but no, she hears the same! So it will definitely not be losing her anything by trying this, as the worse case is she will hear exactly the same, best case she will hear better!