My journey to a cochlear implant

As a hacker, I thought other hackers might be interested in my journey to getting a cochlear implant. It’s still the early stages, but I thought I would document this wonderful journey to the land of being able to hear.

I was born in New Zealand, in 1988 and had moderate hearing loss since birth. The reason that my ears refuse to work lies in a mitochondrial disease (mutation A7445G). In the last 5 years, my hearing loss has progressively moved to the ‘severe’ level.

This specific mitochondrial mutation causes people in my family to go progressively deaf and there’s a chance for a severe skin disorder, known as Palmoplantar Keratoderma.

My family was quite lucky that we have a wee bit of research into our specific genetic mutation (A7445G) thanks to Marion Maw and Denise Allen-Powell who worked for the Biochemistry Department at the University of Otago. From their studies, they found that there were four generations of my family with the A7445G mutation and the pattern showed that it is a maternal mutation, i.e. it is carried out by the females of the family and passed from one generation to the next.

The most interesting thing about myself and other family members was that none of us relied on hearing aids. We are all master lip-readers, and body-language experts. Growing up, it was natural to pay closer attention to someone and concentrate harder to understand them than it was to “listen”.

Quite recently I applied for a cochlear implant here in New Zealand and went to my first appointment with the Southern Cochlear Implant Programme. Here, my eyes were opened to exactly how deaf I was.

In the appointment I was asked to sit in front of a television and repeat sentences of what the person on the screen said. I got 90% right. Silly deaf person, you’re not supposed to be able to hear! So they turned off the picture, and still I got 90% right. (the funniest one I repeated was, “the farmer hates broads” but it was pests or something… oops)

The disbelief came when it was time to listen to singular words. With the screen turned off, I got 0%. With the screen turned on, I got 8%. That’s crazy!

The audiologist, who has had some extensive knowledge of my family (other members have had cochlear implants) explained to me that, the way I communicate is quite different. Because I don’t *use* my ears (because they’re borked) I make up for it in lip-reading, body-language and the big one: context. She said, that I am probably overworking myself just to understand context. I may well understand 8% of what someone has said, but based on the few words I heard, the way they said it, my brain would make up the rest.

I was flabbergasted at the insane level that my brain was helping me. (probably explains why I’m so dog-tired all the time). All this pointed me towards being a cochlear implant candidate, and because of the amazing success rate that the surgeons and this specific programme have had with my family members, I was told I’ll be the “ideal” candidate.

By candidate, I mean I’ll be on a waiting list (it’s a maximum of 3 years) but it’s all free. Paid for by the taxpayers (thank you my fellow kiwis).

My goal by documenting this process is that one day, when I have had a foreign body (shudder) inserted into my head, is that I’ll be able to hack it. Not the processor per se, but I can simply imagine the possibilities of somehow hooking it up to my Android… augmented reality cochlear implants anyone? Way better than Google Glasses ;-)

If anybody has any experience with Med-El (Austrian) or Cochlear (Australian) … brand cochlear implants, please let me know. Choosing brands isn’t quite the same as choosing between Adidas or Nike shoes.

P.S. Google, I’ll be happy to test your new Google Ears when you make them!

9 thoughts on “My journey to a cochlear implant

  1. Joe

    I was nearly able to do a research project with cochlear implants as an undergrad, but the supervisor chose someone else.

    From what I understood (this was 5 or 6 years ago) they were pretty basic. In your position, I’d go for the one with the most electrodes (that is, highest resolution in fourier-space) as that will improve the experience.

    I listened to a few sounds played through an implant-simulator (only 8 electrodes, but there was a new one coming with 25 at that point) and it nearly made me cry – while you can make out words, music is rendered into static (since it can only render as many frequencies as it has electrodes.)

    Good luck, I hope the surgery and the calibration aren’t too painful; I’m sure the the goal will be worth it :)

    Reply
  2. Sean Stickle

    Interesting! But aren’t *all* mitochondrial mutations matrilineal? You’re not getting any mitochondrial DNA from your Dad, after all.

    I look forward to further accounts of your journey, veb.

    Reply
  3. Maxime

    My mother just got implanted a few weeks ago with a Cochlear implant. They will activate the implant for the first time next week and we’re all very hopeful that it will work (the doctor also say she’s the perfect candidate). Like you she’s an excellent lip-reader. She has lost hearing completely in one ear (0%) recently which triggered the need for an implant (2 month waiting list and 100% paid for in France!). She used to have less than 1% hearing in both ears and used hearing aids which she will continue to do with the working ear. Mail me if you want more info.

    Reply
  4. Jarek

    Hi Mike,

    my son got his implants four years ago when he was two years old. Having the choice between Advanced Bionics, Cochlear and Med-El we decided on the last one primarily because of its smaller size (with a similar/the same number of electrodes/other parameters as and the other two brands). Med-El also claim to process music very well and indeed my boy is a keen (and pretty good for his age) singer. We observe that more and more people in the UK have been choosing Med-El.

    One important factor is the long term support for your implant in case you consider relocating. Different implant centers prefer different implants and may be worth to check around which is the most widely supported.

    Good luck on your exciting journey!

    Reply
  5. Dominik

    Hi Mike

    A very interesting post!
    My Cochlear Implant surgery was on the 14th November and the switch-on is on the 12th December. I am counting the days! I have similar background like you and I am considered as an “ideal candidate” like you. Further, I am good at lip-reading (but not extra-class) and very good in understanding getting the context. I decided myself for Advanced Bionics because of the “Clear Voice” feature and because they have merged with Phonak.
    I am looking forward in reading more of your journey to the Cochlear Implant.

    Reply
  6. danny

    I’ve had the cochlear implant for about 10 years now. I still use the old s series processor since I can just a audio cable directly to my android g2 and play all my tunes without bothering anyone anywhere because after all its all in our head..lol.. I want to be able to program my processor at home at least to store it on one of the three channels, another words hack my processor.

    Reply
  7. Shannon

    I’m a second-year software engineering student, and I’ve had a CI for 6 years now. I’m also interested in hacking it and controlling it with my android. I’ve bookmarked your site – if I make any progress I’ll let you know.

    A couple months ago I applied at the company in Australia that makes my implant, but they didn’t seem much interested. Oh well!

    Reply
  8. Xerxes

    Hello! Stumbled across your page, and just wanted to confirm that from what I know of CI technology, it will make an incredible difference to your hearing performance, for the same reasons others have outlined above. :)

    Wish you all the best, and if you have have any questions, i’d be happy to answer as best I can.

    DISCLAIMER: I’m a software engineer for Cochlear Australia.

    Reply

Leave a Reply

Your email address will not be published.

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>