Bilateral cochlear implant language development

30 10 2011

This is a fascinating look at Lily’s language development from 9 months (pre-implants) to 48 months in a series of videos. Lily received bilateral cochlear implants at 10 months.

Lily at 9 months:

Lily at 12 months:

Lily at 15 months:

Lily at 18 months:

Lily at 21 months:

Lily at 24 months:

Lily at 30 months:

Lily at 36 months, receptive language test:

Lily at 42 months, language test:

Lily at 42 months, sounds:

Lily at 48 months, language test:

Lily’s mom says –

They show how language develops, the amount of language (most of it strategic) we put into Lily’s daily routines and how with the right supports CI kids can communicate remarkably well at a very young age. I think the videos could also give a lot of hope to parents when they first received a diagnosis.

Certainly it helps that Lily was bilaterally implanted at 10 months, that we have great audiological and speech/language/listening resources, that we chose AB and that Lily’s Dad and I are a little language and listening obsessed (especially in the early days – 30,000 words at a minimum).

These videos are from a longitudinal study in the Language Development Lab at Boystown National Research Hospital, directed by Mary Pat Moeller, Ph.D.

Please leave comments on the original post – I’m sure Lily’s mom will appreciate them! The original post has audiology reports and write-ups to add to the story. These videos may get captioned at some point, so check back. Aren’t these videos a treasure, and an incredible memento for Lily in the future.


Telephone relay services in UK & OFCOM

20 10 2011

DAART’s response to OFCOM’s consultation document on Relay Services is on DAART’s website.

The deadline for this is 5pm today.

Do look at Hearing Link’s website where they have submitted a response to OFCOM.

Also look at TAG’s website where TAG has sent in a consolidated view from the member organisations.

My Hearing, My Future

20 10 2011

A competition, My Hearing, My Future, is now open to young people aged 10-18 years.

Entries are invited in English or British Sign Language. Participants are invited to be creative and come up with a winning idea for using science to help improve life for the deaf, deafened or hard of hearing.

Previous winners have come up with some exciting ideas;

Helen Thomas, from the 12-14 age group, was the winner in 2009. Her entry said:

I would like to think, that in the next 20 years there will be great advances in helping deaf children/adults. As a cochlear implant user I would expect advances in this area to be more exciting, maybe along the lines of putting the implant and processor under the skin and therefore eliminating the need for an external processor, or a implant that tunes in to the conversation you are listening to, and eliminates surrounding sounds (very science fiction!)

Or maybe gene therapy can play a part, with replacing the faulty gene, I along with my family, have had blood taken to see which gene is responsible for my deafness, this is something I would think research would focus on.

Communicating with deaf people, it would be great if, a degree of sign language could be on the school time table, its great to learn sign, you never know when you will need it, its important to make people aware how difficult it is for deaf people, like all sensory impairment, “making people aware” is very important.

I would like to see all classrooms equiped with the necessary sound fields and finally here is one crazy idea, what about glasses/or contact lenses that when worn would show subtitles maybe in a cinema or TV.

So this is my vision for the future, I hope it helps!

Jordan McGrath, from the 15-19 age group, was the 2009 winner. His entry said:

There are 9 million deaf people in the U.K, 34,000 of which are children and young people. It doesn’t matter whether a deaf person has mild deafness, moderate deafness, severe deafness or is profoundly deaf there are always solutions such as technology equipment such as hearing aids or cochlea implants. There are other solutions such as lip reading and sign language. 2 million people in the U.K have hearing aid/s. 4 million people don’t have hearing aid/s, this is a high number and I think that people who want to have a hearing aid/s or cochlea implant should investigate what equipment is useful for them. It would lead to an easier way of life. They would benefit from it hugely. I think that deaf people should be treated equally as hearing people: examples, more subtitled shows at cinemas, interpreters at shows, pantomimes and other public places where a deaf person needs help with communication in some way. I think that these services should be funded by the government. I also think that there should be more deaf awareness taught around the U.K: examples, staff in supermarkets, high street shops, churches, restaurants, cafes and the most important of all are doctors, hospitals, dentist and other medical care centres.  I would benefit hugely if this problem was solved because me myself as a deaf person can struggle at times when I go out to public places such as shops. Another thing is that new buildings that are being built should be built with soundfield or loop systems. More DVD’S should include either a choice of subtitles or a signer. I find that many DVD’S that my family have bought in the past have no subtitles so therefore I can’t watch it.  Also modern mobile phones as seen in shops should contain all the features that a deaf person needs.

I think that a lot of deaf people would benefit from a waterproof hearing-aid/s which has different levels for different kinds of deafness. These waterproof hearing aids could be used in swimming pools in the sea and other wet areas when it’s raining. This way they wouldn’t miss out talking to hearing friends/family or even a deaf person who can’t communicate. They would have to be a small object that fits into the ear so that they don’t fall out and get lost. Normal digital and analogue hearing aids are not allowed to get wet. I also think that a higher powered hearing aid/s should be created for profoundly deaf people. It would be loud enough so that a deaf person can hear all the correct sounds that are being said and this could improve their speech. Also in shops and other public places they may hear what the person is saying more clearly. It could be electric chargeable although this wouldn’t be good for the environment so high powered batteries could be made. Also a person with no hearing or little hearing should be provided with a choice of having a hearing dog for the deaf, this helps deaf people have a more independent life and not rely on others too much. A higher local service should be provided for deaf people if they are in need of something or having difficulties with something. They should be provided with a person who works at that local area and are able to get in touch with them as confidently as possible. They should always have support no matter how old they are.

My Hearing, My Future is a collaboration between Deafness Research UK and Deafness Cognition and Language (DCAL) Research Centre. Sponsored by Phonak, Advanced Bionics, BT, and Chilli Technology.

Competition : My Hearing, My Future

1 + 1 = 3

13 10 2011

Imagine you were born with no legs. Years later, you are given an artificial leg. It works perfectly, but you have to learn how to walk with it. When you’ve never had a leg before, you’ll struggle to learn how to walk. You have  spent a year learning how to walk with the first leg. It’s not perfect – but with a crutch, it is so much better than having no legs at all. Then you’re given a second leg. The first leg helps the second leg to learn the movements necessary for walking, so the newer leg learns at a much faster rate and helps to improve the ability of the first. Each leg helps each other. The combined input of two legs is greater than one leg alone. Two legs are much easier to walk with, requiring less effort and being less tiring than managing on just one leg.

So it is with bilateral cochlear implants.

My ability to understand speech has changed significantly in the four weeks since activation of my sequential cochlear implant. It’s been a very different experience from my first cochlear implant, with a very different outcome.

Within two weeks, voices shifted to a lower tone and Donald Duck left the house very quickly. He took eight months to leave last year! I reached full volume after three weeks. My tinnitus has disappeared from my newly implanted ear, buzzing in my first implanted ear only when I’m tired. I can detect environmental sounds but not always recognise them …. yesterday, I got confused between a crow and a reversing truck! I’ve been so busy since activation that I have not done very much specific rehabilitation work.

+ Summative effect

The learning curve of the sequential cochlear implant has been much quicker than the first, as my brain already knows cochlear implant sound. The older cochlear implant is helping the newer implant as it learns, and the newer implant is helping the older implant by giving it a boost with more sound. The summative effect has reduced the effort it takes for me to listen, and makes speech comprehension easier.

+ Localisation of sounds

Two weeks after activation, I was in a lift (elevator) exiting the underground, and it was packed full of people. A man was talking to his son in a loud voice, and I was able to detect where he was – behind me and to my left. HA HA – brilliant! That was the first time in my life I was able to localise a sound. Since then, I have enjoyed being able to work out whether sounds are coming from my left, right, or are in front of me. If a sound is coming from the side, it sounds louder on that side. If it is in front of me, it sounds the same in both ears. Recently, I went to a cafe and sat there nursing a coffee, listening to the sounds around me and working out where they were coming from. I got annoyed when two women sat near me as they had such loud voices – all very definitely in my right ear! The chef was definitely chucking pans around in my left ear – peaceful it wasn’t!

+ Speech in noise

I have noticed an improved ability to hear speech in noise. However, I’m still lipreading full time! It’s now easier to concentrate on a speaker in a noisy environment but this is still pretty difficult.

+ Head shadow effect

With one cochlear implant, I was unable to hear sounds on my opposing side as my head acted as a barrier. It was weird to have excellent hearing on one side and nothing on the other.

+ Binaural hearing

Unilateral hearing was such hard work. I could understand the odd few words here and there, but never enough to pull a string of sentences together. I feel that the past year has been such a struggle. It was worth it, but it’s been a struggle nonetheless. My remaining ear was very poor and deteriorated further over the last year. I felt as if I was about to fall over into the abyss, I was walking on a knife edge with white light on one side and darkness on the other, my world was so unbalanced. Now, everything feels right again. I say ‘again’, because I always wore hearing aids in both ears, even though my left aided ear didn’t help me at all, it just gave me a little bit of balance to my world. Wearing a hearing aid on my second ear made me feel ill, as the sound signals were so different, and competed against each other for attention. Having two good ears feels natural and although one cochlear implant on its own sounds flat and odd, the two together give me sound that is somehow ‘whole’. I am already ‘centering’ sound, it doesn’t feel like I am wearing two separate hearing devices. It feels like I am wearing one device somewhere in my head. Two implants make the world seem whole and solid, I feel as if I am ‘centred’ within my sound environment, and everything sounds much more natural. One cochlear implant on its own sounds wrong and skewed, whereas two together sound balanced and … just right. Whooo. I am just LOVING stereo sound!

I wondered whether the outcome would have been different, had I chosen to implant my better ear first. My audiologist says it wouldn’t have mattered. Hearing is a brain thing. Once the brain knows cochlear implant sound, the second implant is clued in much more quickly.

+ FM system

I tried an FM system last week. I had used one at school until my hearing deteriorated too much to hear with it. I remember it giving me a clear voice, directly into my ears. If the teacher forgot to take off the transmitter microphone and wandered to the other side of the school, I would clearly hear every word until I found her! Every September, I would hear unintelligible mush until suddenly one day I would wake up, my brain had ‘sorted it all out’ and I would understand every word for the rest of the academic year. The long summer holidays were always my downfall, and in September I would have to learn to hear all over again. With excitement, I charged up each piece, connected the system, and prepared to listen. Complete stone-dead silence. I checked all the pieces were switched on and set correctly. Still nothing. I thought my cochlear implant batteries must have died, so I switched them for a fully charged pair. Still nothing. I checked all the settings again.  I plugged into my iPhone’s radio …. silence. I couldn’t understand it. I was getting really frustrated and starting to panic. Then I had a lightbulb moment. I switched the processors from one ear to the other, and hey presto! there was sound. I almost hit the ceiling with how loud it was, with the volume at the lowest setting possible.

Remember to wear the correct processor on each ear! I now colour code my (L)eft magnet with a b(L)ue cap.

+ Hearing test (October 2011)

A hearing test was carried out on my right cochlear implant only (red line), and then with both cochlear implants together (blue line). My audiogram proves that my hearing with two cochlear implants is better than with just one!


+ Speech comprehension scores

Speech was immediately easier to understand with two implants. On my way to my first mapping session after activation, two days after switch-on, I was listening to Stephen Fry talking on my iPod – using only the new ear.  I didn’t have time to look for the correlating printed book so thought ‘Ahhhh I’ll just do without’. I was able to understand bits of sentences …. amazing. Just amazing. In the speech discrimination tests, I scored 85% with single words and 100% on sentences. I got most word pairs and discriminations right (e.g. nip/lip : distinguish which one is being said).

We compared the second implant at one month old against the first implant at one month old. In the testing booth I scored 19% in word and sentence tests, which was much better than my first implant which scored pretty much zero! We then tested my speech perception in a more realistic setting as my speech therapist read a story to me, The Emperor’s New Clothes. Last year, with one implant, I scored 83%. This year, with two implants, I scored 93% – against the background noise of road works in the street outside.

I’ve been having conversations with people I know well – ENTIRE conversations. !!! No lipreading! Both on Skype and in real life. It’s not easy and I don’t get every single word, but it’s certainly much easier with two implants. *screams in delight*

+ Music

I was tested on Cochlear’s Sound and Way Beyond software and scored 97% in music and melody perception on my new ear alone. Already, music sounds quite good, and I have only listened to around six hours of music since activation. Advanced Bionics don’t offer a binaural direct connect lead so I bought a splitter from an electronics store to enable me to listen to my iPod with both ears. (More on this in another post.) Bilateral music is just …….. awesome.   *sobs*

The only hitch I’ve had is feeling as if sound was quieter and less complete with my new implant, in comparison to my older implant. We eventually realised the implants had different IDRs (Input Dynamic Range). The older implant is set at IDR 70 and the newer implant was set at IDR 60 – once the IDRs were set to the same level, the world sounded much better. I tried them both at IDR 60 for a few days, then both at IDR 70 for a few days, and couldn’t really tell the difference. Two implants are giving me so much more hearing that I am happy enough with a lower IDR – but I just decided to stick with IDR 70 for both. Both implants have IDR 80 for music. – I’m a sound junkie!

I’d recommend Arlene Romoff’s book, Listening Closely: A Journey to Bilateral Hearing. She offers a lot of great insights into what it’s like to have two cochlear implants. My cochlear implant team have seen very few bilateral adult recipients. The evidence of the benefits of going bilateral is thin on the ground in the UK, particularly for those who, like me, were born profoundly deaf.

Here is a comparison of my hearing before I started my cochlear implant journey, and now, with bilateral implants. Amazing, isn’t it?


Going bilateral has been absolutely incredible. It’s been better than I’ve dreamed and hoped. I didn’t even need all my mapping sessions as I progressed so fast. I’ve never been able to hear well with two ears nor benefited from bilateral hearing, but wearing two hearing aids all of my life, lots of rehabilitation work, Auditory Verbal Therapy sessions, and the cross-over training of the sequential implants have really set the scene for my success. If you’re thinking of going bilateral and you’re hesitating … don’t wait one second longer! Go for it and grab it with both hands! You’ll LOVE it!

*Crying buckets of happiness while doing the longest Snoopy dance ever*

Mike’s hand built cochlear implant processor

10 10 2011

For the Geeks among us, it’s possible to build your own speech processor and save about $7,000 on buying a Harmony. A PSP body processor headpiece and cable plug into the connector at the left edge of the gold board.

Yes, there is no battery for it. It must be plugged into a wall power socket.

Yes, it must have a USB cable going to a computer.

Yes, it’s big (5 x 9 x 1 inches).

Yes, you have to write your own stim software, similar to HiRes or F120.

Yes, you need to write your own fitting software, similar to Soundwave.

This processor allows me to experiment with future stim strategies so that we may all hear better with our Advanced Bionics implants.


Hey, thanks Steve

7 10 2011

I was very sad to read of Steve Job’s passing. His brand of magic has made my life more accessible. I can hear clearly on my iPhone 4 which has a T4/M4 rating – great for listening clarity. I’ve got lots of great applications on my phone which help me in so many ways – talking books, iPod, radio, keeping me in touch with blogging, RSS feeds, Twitter and Skype. I can get my remote captions on it too, for conference calls and meetings. I can’t carry an ordinary laptop around, it’s too heavy and stresses my spine after a few minutes carrying it, so his MacBook Air saves the day. Saves me from a lot of doctor visits too. My little iPod gives me a lot of opportunities to listen to music and talking books, and gives me more opportunities to learn to listen and improve my cochlear hearing.

This article by Tim Carmody touched me …. I hope Steve Jobs knew how much of a difference he  made to people’s lives. He pushed the disability envelope and helped other people to see that there are possibilities and different, and better, ways of doing things.

Cook night :)

7 10 2011

Tonight’s subtitled feast : Let’s make moussaka.