Let’s get borgerised!

2 08 2009

I’ve never been keen on the idea of joining the cyborg crowd. A friend told me of her experience and this got me considering the idea more seriously. Martine was about the same age as me and, like me, had always been deaf. She received her cochlear implant a few years ago in Belfast. Six months after the operation, she decided to try her hearing aid in her other ear to compare it with the CI. She was stunned by the huge difference in quality of sound and binned the hearing aid. What you don’t have, you don’t miss! Last month I asked my doctor to refer me for a CI assessment. I thought there’s no harm in finding out more, perhaps they will tell me I’m not deaf enough for a CI or that it will be a benefit to me.

My first hospital appointment was with the speech therapist Liz. She told me about the procedure and of the risks involved. This CI centre has put 600 people through the procedure over the last 25 years, of whom 50 are non-traditional CI users, i.e. those who have always been deaf and have no or few neural pathways to make sense of new sounds. The operation is a few hours long and the patient goes home the next day and needs to take 2 weeks off work. Switch-on is 6 weeks later. Rehabilitation, making sense of new sounds, takes a few weeks for most patients. For non-traditional patients like me, rehabilitation takes up to 2 years. The benefits also are not as great for non-traditional users. Those who have previously had hearing, can use the phone and hear without lip reading. Non-traditional users won’t be able to use the phone and will still need to lip read, however a lot of the strain is taken out of lip reading. There are some risks attached to this procedure, as in any operation. Patients need vaccinating against meningitis before the operation, as the skull is opened up and exposed, posing a greater risk of catching meningitis. There is a risk of facial paralysis, but Liz was very confident this wouldn’t happen, as the computer beeps when the surgeon gets too near the facial nerve and he just moves away. There is a risk that the CI won’t work, but it can be replaced. The procedure is irreversible, I wouldn’t be able to go back to wearing a hearing aid as when the CI’s electrodes are implanted, they are inserted right into the auditory nerve in the cochlea and destroy all the hearing in that ear.

Liz then gave me a CI to look at. It is huge! It’s much bigger than my hearing aid. And it’s ugly.


Source: Wikimedia Commons

The part that sits behind the ear, and unfortunately looks just like a hearing aid (why oh why can’t designers come up with something cool to wear?), houses the microphone, the speech processor (which can be updated), and the battery. The round bit that sits on the head is the magnet. This connects via an electromagnetic field to a magnet inside the skull linking to the implanted electrodes. Up to 24 electrodes (or channels) are implanted to give enough perception for the speech frequencies, compare this to the 15,000 hair cells in a normally hearing ear. Sound won’t be heard as a hearing person would. A few of my friends have had CIs recently and the first thing they said was ‘Everyone sounds like The Clangers!’.

The House Ear Institute has demos of what a deaf person hears through a cochlear implant. I’d love to hear your thoughts.

My next appointment was with the audiologist. I was told that some people are disappointed with their CI because they had very high expectations. A CI does not replace hearing, it is just a very powerful hearing aid and works in a different way to a traditional hearing aid which utilises your residual hearing. It’s not a magic cure, and you can only work with what you’ve got. I was told that I’m certainly within the hearing loss range for a CI but that I’ve done extremely well with hearing aids, so that could work against me. So can’t this effort with hearing aids be transferable? Hearing with a CI will mean that everything will be very loud to a person who hasn’t heard for a long time, like coming out of a week in a dark room into bright sunlight. It hurts and it’s overwhelming. I was given the standard hearing tests and finally a word test. The computer spoke about 12 sentences and I had to listen and repeat. No lip reading! The audiologist said I am likely to score zero and not to worry. I said I’m going to guess, if that’s ok with you. The look on her face was priceless when I scored 52%. Um. They should have used single words, and not sentences! Then I would’ve scored zero, with no grammatical clues to work out what’s being said.

Last week I went to see the consultant surgeon. Just prior to that appointment, I found an audiogram at home, dated 1997. It showed quite a different hearing loss. I hadn’t realised that I had lost so much hearing since then, I’ve lost 30 decibels. I took this audiogram with me and gave it to the surgeon (some dumbass hospital somewhere had lost all my medical records). His opinion was that I am certain to need a cochlear implant in ten years time as my hearing is deteriorating so much. I’ve barely noticed, but then I don’t listen, I don’t use the phone, I look and lip read all the time. So the question has now become one of when, not if. I don’t really have much choice. It’s going to be total deafness or a cochlear implant – forget the hearing aid.

This has suddenly become a lot more scary.

I’m very curious about the development of a new and superior cochlear implant which was reported in 2006. Maybe I should wait?

More updates soon. The next step is a MRI scan on Friday. Some shut-eye time!

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8 responses

3 08 2009
Jeremy Freeman

Fascinating blog – Ravit and I shall be following your progress closely.

3 08 2009
lyntoo

Good luck, can’t be an “easy” decision… Thinking of you. xx

5 08 2009
mog

I had my CI put in at the end of June and have had it switched on for almost two weeks. The sound is more comfortable than through my hearing aids and already I hear better than I did with the aids. My implant is a Med-El, which has preserved some of the low frequencies, but still has an electrode right into the cochlear if I lose those frequencies too. It looks good too I think. I have a picture on my blog and more info that may interest you.

5 08 2009
funnyoldlife

#Jeremy & Ravit – you can probably give me some useful advice on this, having been through this on the sidelines. Let’s update & discuss in September.

#Lyntoo – thanks hon!

#Mog – ‘More comfortable’ sounds interesting. I will look at Med-El. Is that one of those hybrid implants I’ve just found out about? I will be reading your blog.

It’s hard to ask my surgeon questions when I don’t even know what questions to ask….

5 08 2009
mog

Hi there
No it’s not an hybrid you don’t wear a hearing aid in the implanted ear. The electrode, FlexSoft is very floppy and the idea is that it causes little damage as it goes in to the cochlea. My hearing is down in the low frequencies in that ear since the op but I still have some. The combined effect of having some residual hearing is said to improve the success of the CI, the quality of sound heard.

I was guided by my surgeon, he said that would be the best for me and I believed him. Each CI has plusses and minues but I don’t think that there is a bad choice, just a different choice

5 08 2009
Sarah

Randomly came across your blog, a lot of what you’ve mentioned here are things that I’ve contemplated before. I’m severely-profoundly deaf in both ears (since a young age) and it’s progressive so it is prone to getting worse over time. I’ve been offered a CI before because I have really bad tinnitus in both ears and my doctor thought it may help to make the tinnitus fade into the background more, especially since I choose not to wear hearing aids (I prefer to use the natural hearing I have). It’s always interesting to see how they’re developing technology over time, and the development of CI and hearing aids is something I try to follow…just in case! I hope you can find out enough to help you make your decision 🙂

13 08 2009
funnyoldlife

#Sarah – I’m going to ask my audiologist about Naida hearing aids, I’ve heard they are good, even though some people are experiencing problems.

7 09 2009
Sarah

Oooh, thank you, may have to check those hearing aid out myself. I still have my old digital hearing aids, and I tried them on a couple of weeks ago to see what everything sounded like again…and it was the first time I can remember hearing one of my cats meowing 🙂 (I don’t think my blog shows up on here, just in case, its: http://www.starsandrainbows.wordpress.com)

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