William Mager: Billy 2.0 – Failing Ugly

So, I’ve had the operation, and I feel pretty good, considering.

I’m trying to stick to my policy of full disclosure as much as possible without dissembling or rationalising. Especially important in this post, as I’ll be talking about the operation I’ve just been through, and the side effects I’m now living with for the rest of my life.
At about 1pm on Friday I was lying on a hospital bed in my gown and DVT socks (not my sexiest look), when a very nice doctor came to take me through the final pre op briefing. He showed me the disclaimer form I had to sign, which gave me pause for the first time in the 18 months or so I’ve spent in the process of getting a cochlear implant. You can see the form at the top of this page but the handwriting might not be the easiest to read.

The Intended Benefits: ↑ hearing.
Serious or frequently occurring risks: bleeding, hard bandage, infection, scar, damage to chordal → altered taste, damage to facial nerve → facial weakness, dizzyness, tinnitus, CSF leak, meningitis, device failure, replacement

I asked him what the ‘CSF leak’ was, as that didn’t sound like one I’d come across in my research. He told me that stood for cerebrospinal fluid. When they drill the hole into my inner ear they sometimes accidentally puncture the liquid casing of the brain, which then leaks out through the hole. But, he quickly added, it’s nothing to worry about. It only happens in one or two percent of cases.

Wait, that’s 1 in 50? What?!

I signed the form anyway. I said goodbye to my wife and went upstairs to the operating theatre, where I took my trainers off and laid down on a bed. The two anaesthetists started chatting to each other about Sri Lanka while injecting a pint of what looked like mlik but was acutally anti sickness medication into my arm, followed by the general anaesthetic. I started to feel very warm, and could feel a tingling sensation rising up my body, then I closed my eyes and I was under.

When I woke up, the first thing I saw was the face of the trainee nurse, Jon, who had observed his first cochlear implant procedure. He looked pretty pale and shaky, and I think I asked him ‘Are you OK?’ to which he nodded vigorously and gave me a thumbs up.

Then I felt the pain.

I think most of us have had an ear infection, an ice cream headache, or sore ears after a rapid descent from a long flight. This feels like all three, but localised in the left side of my head. When I turn my head too much to the right, pain shoots down the side of my neck. It’s not agonising. Just a dull ache that’s always there. Strangest of all, when I turn my head a certain way, I can feel the skin stretching over something foreign – a magnet and a tiny circuit board that is now inside my head for the foreseeable future.

They wheeled me down to my room, where I was very talkative and chatty. Basically I was still high on anaesthetic. Anyone who’s woken up still drunk from a good night out will know the feeling. After necking a bit of codeine I was playing around on facebook and twitter as usual. I wolfed down the fish and chips provided by the hospital. They tasted awful, but I could taste them. My mum brought me a bit of cake which tasted even better. Three hours later, I went home.

Of all the side effects on that form I signed, I don’t seem to have many, if any. Since I took the bandages off, my earlobe feels a bit numb. The skin in front of my ear feels numb too. But I don’t have any damage to my face, my tastebuds or my balance. Touch wood, I seem to have got away more or less side effect free.

At the same time, I’m wondering how life will be now I have this tiny magnet, circuit board and electrode permanently stuck inside my head. I definitely feel different right now, and I sort of miss the old, relatively undamaged, complication free, pain free, side effect free Billy 1.0. I can’t do a system restore to my old self. Whoever I was before – physically at least – is now gone for ever and I have to live life as I am now.

Short term, I just need to get over the initial pain and feelings of strangeness in my head. Long term, there are further adjustments to make – most of which are detailed on this very comprehensive page.

I can’t do contact sports like football, martial arts or rugby.

I can’t go on roller coasters with a high g force rating.

I can’t scuba dive below a certain depth.

I can’t go through airport metal detectors or security gates without a letter.

I have to be really careful around static electricity from now on. A lot of people were making jokes about how my cochlear implant was like installing a Soundblaster card in an old PC – they were closer to the truth than they realised. I have to avoid old CRT monitors, comedy hand buzzers, live rails, anything which might deliver an unwanted charge to my delicate electronic internals.

So, that single solitary benefit ‘↑ hearing’ is looking increasingly outweighed by a lot of other factors. When I’m switched on in a few weeks’ time, will all those side effects melt away into insignificance?

Will the implant work at all, or will it ‘fail ugly’ and have to be replaced? Will I be able to cope with the new sounds, or will it be a long period of adjustment?

I’ll soon find out.

Further Reading: Cochlear Implant Safety Guidelines

This post was first published on William Mager’s blog. Check it out here: http://wlmager.com/blog/

The Limping Chicken is supported by Deaf media company Remark!, provider of sign language services Deaf Umbrella, and the RAD Deaf Law Centre.