Billy 2.0 – Failing Ugly

Hospital Waiver Form

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.

An hour after the operationWhen 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.

Cochlear Implant X ray (not author's own)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

10 Comments

  1. Tina says:

    You're doing brilliantly!

    By the way, you can go through airport metal detectors and security gates - it's up to you if you want to declare your electronic status but I never bother and just waltz through. I only have issues with the airport gate in Kuwait which is turned up so high I can probably hear it buzzing if I listen hard enough, and the library at work (too many books have gone missing). Also, I do martial arts and so a few other CI users.

    My favourite bit in the guidelines is where they warn you against crawling under electronic fences :)

    Reply
  2. Tina says:

    P.S. With "high performance" security gates, your implant will switch off for 2 seconds then on again - don't panic! You might want to take the magnet off before you walk through so you don't get that OFF-ON rush.

    Reply
    • WLMager says:

      I'm planning to start up with the Muay Thai again in 2013 to keep fit... and that's good news re airport security. Those BCIG guidelines seem somewhat over cautious to me anyway.

      I'm typing this with an old and busted macbook pro laptop on my lap, crackling with static electricity, so I may come to regret this statement... xx

      Reply
  3. Andy says:

    Congratulations! The after op bit will wear off quite quickly don't worry. I had a bit of a headache but to be honest I have had worse hangovers. Don't take all that stuff about static electricity too seriously. I use all kinds of electrical apparatus including a welder and flashguns and nothing has blown yet! I expect you know more about leccy than the medics so just use your common sense and stay away from 33kV transformers!

    Reply
  4. Sofya Gollan says:

    I've walked through many airport detectors and never been stopped. Forgot about the scuba diving ban - woops! But as for avoiding martial arts, well you may as well avoid any physical activity as what they're talking about is an accidental blow to the head. My toddler is more lethal than any martial arts instructor with his tantrum blows to my head if he can manage it.

    Reply
  5. Robyn says:

    Congratulations - you're now over the easy bit :) The hard work is still to come! I don't worry about metal detectors at the airport - just waltz through them without letting anyone know.

    As for sports - I played touch rugby, indoor netball, basketball, I ran, went to the gym, played soccer, all with my implant ON, so would worry about sport too much.

    i've also managed to put my hand on an electric fence (live) in error. Wiped my map only fortunately, just went and had it put back on the following week so I could hear normally again. I wouldn't recommend doing that too often though!

    Cheers
    Robyn in New Zealand

    Reply
  6. Peggy says:

    Congratulations! Sounds like you are off to a good start. I don't remember having pain, but then I don't remember having pain after giving birth to 2 sons. I suppose the joy of sound (and childbirth) takes away the memory of pain.

    I did suffer from dizziness and continue to this day after 6 months of surgery. However, after my sessions with the physical therapist and correcting my contacts, the dizziness is less worse. I was diagnosed with vestibular disorder. I never received the same information as you did but I do not regret having this surgery. I went to a party and had a great time because I was able to understand much better what people are saying. Before I would be quiet and unsure what people are saying.

    As far as restrictions...there isnt any except you can't have a MRI done. I've flown many times and would tell the security that I have a CI and they let me through. On the computer, it shows on my head that there is metal and only one time they looked at it. I played sand volleyball a month after surgery, I even clipped my CI to my hair so I won't lose it in the sand. Instead, i lost my wedding band! but found it the next day with a metal detector. I didn't play very well due to my dizziness.

    Good luck on your upcoming activation. I look forward to reading about your progress.

    Reply
  7. Rob says:

    Hi - glad things are going well all sounds very similar to my Mum who had her op 5 weeks ago now and went for switch on today. Unfortunately hers seems to have some tech problems so they were not able to complete that and we have to go back next week. Im hoping they can get sorted without another op as she is quite old but I guess will find out next week. What make did you go for?

    Rob.

    Reply
    • WLMager says:

      Oh dear, that's worrying. I hope it gets sorted soon. I went for Med El in the end... see my other blog posts etc.

      Reply
      • Rob says:

        Thanks and I wouldnt worry they said these devices are extrememly reliable so its just very bad luck that my Mum is having problems with hers im sure yours will be fine! We also went with the Med El device seems the best option all things considered. Good luck with everything I hope it all works out for you :-)

        Reply

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