I’ve just had my 4 year review of my cochlear implant hearing. My hearing is a straight -20db after turning down the volume a little, and it feels natural now to have such super hearing.
I work from home a lot these days; I can hear the neighbours on one side when they argue and the neighbour’s TV on the other side. Hearing well is not always a good thing! My new hearing dog Bailey has a very loud bark so all in all, it can get very noisy sometimes! This “overload” of sounds has been the hardest thing to get used to and I do like to take the processors off occasionally so I can get some peace!
I pick up the phone now and again when it’s an emergency or I’ve had to make a call and there isn’t a hearing person around to ask. Using the telephone takes a lot of confidence and interestingly the most difficult ones are where I had to phone people in Southern Ireland and struggled with the accents (I’m Northern Irish so didn’t expect this!), the easiest ones are where I listened to a digital voice and had to take down a pin number (and got it right! Wowser!).
Red: My hearing in 2016 with bilateral cochlear implants
Blue: My hearing in 2010, before receiving cochlear implants
CUNY lipreading test – 24 sentences of varying length and complexity presented in auditory and visual condition – lipreading with sound
BKB sentence test – 32 short sentences of simple syntactic structure presented in auditory alone condition
I’ve been able to converse with a relative stranger when she was talking to me from the next room, because her voice was loud and clear enough for me to follow, and she wasn’t speaking too fast. I take great pleasure in understanding public announcements on the London underground, on trains, and in train stations.
The most surprising sound was water dripping from the ceiling to the kitchen floor when the builder forgot to secure the radiator flow upstairs – I was in the lounge! I was able to react immediately and run upstairs to alert the builder.
Another sound was (hearing this from the lounge again) water dripping from the kitchen sink into a bucket below, inside a cupboard. It sounded like a double popping sound. Investigating this, I watched – the first pop was the water drop hitting the surface of the water, the second pop was the water bubble bursting. Awesome!
Being able to hear sounds well has made me much more relaxed about communication, and I now understand why hearing people don’t really comprehend the complexities of deafness. When you can hear well, it is so effortless and easy, it’s like breathing. Many hearing people don’t understand that hearing well is not just about volume. It’s about clarity, understanding, processing the sounds that you hear and knowing what a sound is, being able to translate heard sounds into speech and making sense of them.
The most frustrating thing is I still need communication support as many speak quickly and mumble, many environments are too noisy and have poor acoustics, and I am just not used to processing sounds into speech. I will always be deaf. But hey, that’s okay.
Some people speak too fast for me to listen to them and decipher what they’ve said, or they are simply too far away – lipreading is often a much easier tool for me to use. I had some people visit recently to give me quotes for roof repairs, and they all had (hilarious) cockney accents. Listening and lipreading, I had the pleasure of understanding every word they said and trying to keep a straight face at how they spoke. Recently I’ve travelled to the Midlands and the north of England, Paris, Gibraltar, Granada, Barcelona, Budapest, and Qatar – I have enjoyed experiencing and listening to all these accents and easily understood everyone I spoke to, without worrying about whether I would be able to or not. Communication is now enjoyable, and that has been a truly amazing gift.
I look so I can hear.... 
Thank you I have a lot of those feelings so now I know it’s just not me
Our original implants were about the same time in 2010. Hearing with just the one Ci (deaf in both ears) the use of the telephone has gone from a palm sweating, apprehensive, experience to a pick up the phone and do it event.
Yes, the hearing have no realization of how “easy” communication is when there is no, or very little, loss.
Welcome to the soundy world!
Very interesting journey.
I have one implant which was done about 8 years ago. I asked about a second one, but the NHS thought that I didn’t qualify. I have toyed with the idea of going privately, but it is so expensive.
I am very glad to hear that you are doing very well with your 2 implants.
Regards,
Michele Phipps
Sent from my iPad
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Hi Michele
Try pushing the NHS. I did, and a few others have been successful too.
I am sure one of the strongest arguments is better speech processing.
Hi Tina! I too, will always be deaf, but hey, it’s so much better. A lifetime better. I don’t work from home, I work in a noisy room tutoring hearing people in Math at the local community college. I was doing this with my old, worn out hearing aids and have continued without stopping, and have in a natural, spontaneous way changed the style of my tutoring. It is more interactive now, with my asking questions to prod my tutees into thinking for themselves, and less tiring, because I frequently can understand what they are responding without having to lip-read. It is just knee-knocking amazing. I still end up wiped everyday if only because I am still putting the same intense energy out as before but getting better results. I am very lucky to have this job, and am pleased to report that my position is secure! They frequently have new tutors sit at my desk to observe! But this has been going on for quite awhile. I am still using the FM, hard wired into the Harmony’s.
And with that FM, I have been listening to a geography professor, an older guy speaking the King’s English. It is amazing how much I can hear without lip-reading. Amazing, amazing. I never ever ever take all this for granted. I get so angry about the difficulty of getting that second implant that some people are having. There should be no problem about it.
When the day is done, I still love yanking the ears off and enjoying the friendly inner sounds that always accompany me. I tell myself I should keep them on. Maybe, maybe, but tomorrow, tomorrow, and tomorrow I will get cracking and do more practicing. I justify my laziness saying to myself, I do enough at work, but, it would be nice to completely lose my reluctance to use the phone.
I haven’t been to the audie for awhile, so don’t know what my levels are. There is no convenient bus service to Sacramento anymore so I have to rent a car to get there. I am going to start my research into getting the Naida’s. I was supposed to be eligible for upgrades after five years, and it will be five years next year for the second one. But with ACA, rules have changed. Don’t really know what to expect. My audie said to go talk to AB insurance people. I will be doing that soon.
It was good reading up on your latest news! Cheers!
It’s good to hear your progress, yes I remember you saying you were all wired up with so much wire and I had a wonderful image of you walking around your classroom wrapped up in wire!
It is certainly much easier now to ‘deal’ with the card we’ve been dealt, feeling less frustrated and tired with it all. I don’t regret this journey for 1 second.
Did you ever get your FM?
Yes I got 2 Roger Phonak pens and don’t use them as the Harmony gives me bad feedback. The audiologist says I need to upgrade my processor to cut out feedback and I’m still waiting. I’m trialling the Comfort Audio which arrives tomorrow but I suspect feedback will still be an issue.
Oh no! I have the Comtek which is US made. I think. Can’t tell these days. Tell me how the Comfort Audio works. When will you be eligible for the Nadia?
The Comfort Audio works in a similar way http://www.comfortaudio.com/us/
I’m on a waiting list and they can’t tell me when I get to the top, just that I’m on it. It could be another year or two, it could be next month, who knows?
My Harmonies are still working very well, and very happy about that. In 2010 when my right ear was implanted I was told by my audie that I would be eligible for an upgrade in 5 years. But after my left ear was implanted in 2012, I decided to wait another 2 years and get both upgrades at the same time. Hopefully ACA doesn’t mess things up for me.
It looks like you really want wireless. For me the FM is worth the $1000 out of pocket expense and all the wires! I would be lost without it at work!
[…] über 4 year bilateral cochlear implant review — I look so I can hear…. […]
I just wanted to say thank-you for sharing your journey. I have just passed the big 5-0, and my hearing is rapidly deteriorating. I know it is primarily genetic, and like my father I will have profound loss in a few years. I know that it won’t be long until I am looking at a CI, and I can’t tell you how helpful it is reading about your experiences. It is so easy to despair, and the encouragement of your blog gives me a reason to try to stay positive.
My family is also from Northern Ireland, so I feel some kinship as well 🙂
A quick question – do you have any recommendations on learning to lip read? I live a few hours from the closest city (Canada), so taking classes is not an option.
Hi Scott
I’m glad to have been of some help! The CI is amazing, you will have so much to look forward to.
I’m a lipreading teacher and know what’s out there. I’d say the best resource is this one, set up by an ATLA qualified lipreading teacher. There are a few other sites online but they’re not worth your time. A useful way to practice is to watch the news on TV with the sound off. Subtitles on would help in the beginning and you can try turning off the subtitles to make it more difficult.
Actually, I am looking forward with this also. There is always pros and cons with this type of situation but at least you are still normal.
Hello Tina-this has been an amazing journey you have let us have the privilege of sharing-thank you.
My Grandson,who is three weeks old,has been diagnosed as profoundly deaf.How do you feel for CI for infants?
Hi Patsy
There is a ‘window of opportunity’ for infants, they do much, much better than adults if they are implanted before 3 years old. I gather that when implanted so young, recipients grow up to handle hearing loss like a boss, and can function just like hearing people. I wish your grandson all the best!
I’m NOT a fan of having babies implanted. Like the writer has stated, there was a lot of communication required between the Audie and herself to tweak the CI to appropriate levels. For a baby, there no way for the audie to know, ever, and there’s only one test that requires no communication but that doesn’t even begin to cover volume control, mapping, etc. And inappropriate volume control is extremely painful. So, no. Babies should not be implanted until they’re 3 when they have the full capacity of telling the audie if anything too loud, if anything can be heard, etc. I got new hearing aids to wear for 6 weeks, a trial required by the insurance company before I can get the CI, and it was extremely and painfully LOUD. I had to go back again and again to adjust, and it’s still too loud… I wasn’t given certain programs I can use, since my aids do have them… because they’re only for 6 weeks so I’m stuck with blaring noises. All this cannot be communicated if the person is a baby.
There is a test for babies called the Auditory Brainstem Response test.
http://www.bcig.org.uk/assessed/child-assessments/#abr
I took this test myself as an adult and I did not need to feed back to the audiologist. I was unable to feed back which is why I took this test. It does not hurt and it gives accurate results – including volume control and mapping. The ABR test gave me an accurate map.
Adults communicate with the audiologist a lot because they CAN.
You have not been through this and do not have a cochlear implant. You should not give out inaccurate information.
Your experience of a hearing aid is your personal experience – and also, hearing aid sound is very different to cochlear implant sound. A hearing aid amplifies sound, a cochlear implant does not. They are very different.
What Tina says about ABR is interesting. I did not have this and would be interested in trying it. And obviously it works for we see video after video of babies hearing sounds for the first time and smiling happily.
At one time I felt strongly that all deaf babies should be implanted regardless of their parents wishes. I have backed down from that stance since deaf parents may not follow thru with the work of helping their babies to use the processors. Sigh. I was born deaf and am realizing more and more what a difference it would have made in my life to function in a hearing world. My parents raised me orally. My attempts to learn sign language was strongly discouraged. I was made to feel that the hearing aids were enough.