C.I.B.O.R.G. D.A.Y.

27 02 2010

It’s my big day. Bye bye crappy hearing aid. Hello bionic ear. I’m calm. Still asking myself, Am I REALLY deaf enough for a cochlear implant?

THURSDAY 7AM

I got to the hospital and sat in reception, listening to my iPod with my last few minutes of bilateral hearing, until they called me upstairs to the B ward at the Royal National Throat Nose Ear hospital in London. I went through all the prep with 2 nurses – a form detailing any medical problems, and they took MRSI swabs, my blood pressure, and temperature. I met with the surgeon who marked my neck on the left side, he said the surgery should take about 2 hours. The anaesthetist also came to talk to me, then my friend Karen arrived. I chatted with her for the rest of the morning as my surgery was scheduled for 1pm.

I was totally calm and remained so for the whole CI experience – I think this was because I had done so much research and watched a video of CI surgery, and I had the courage of my convictions, I knew I was doing the right thing. This morning, on my way in, I tried listening to my iPod with just my left ear, and I couldn’t even follow the melody of my favourite U2 songs, whereas I was easily able to do this with my right ear. Rock on!

I was given a hospital gown, stockings to stop blood clots, and plastic knickers(!). Wow, this was a whole new fashion thing going! I eyed them nervously until the last minute, the nurse had to almost force me to get all that gear on. The stockings made me laugh as they have holes in the bottom of them … to tickle my feet when I wake up maybe?

THURSDAY 1PM

I walked upstairs to the operating theatre’s recovery room with a nurse and hopped onto a bed. I was to get a general anaesthetic. The nurse covered me with blankets and hooked me up to monitors, with monitor pads stuck to my chest. The anaesthetist had a huge syringe which looked like it was full of milk. He gave me the anaesthetic and looked at me …. I looked at him … he looked at me .. I started laughing and said “It’s not gonna work is it?!” then the next thing I remember is waking up, I was wide awake very quickly and they took me back to the ward with a big grin on my face. It was the best sleep ever and I wanted to do it again! My surgery had taken 4 1/2 hours.

THURSDAY 6PM

I felt very happy and wide awake. David had arrived and he and Karen had been waiting for 4 1/2 hours, they were worried as they had been told surgery would be about 2 hours. I had no pain at all apart from over the ear where the bandage was too tight – it felt as if my ear had been bent over before being bandaged up. I asked the nurse to loosen it for me and that helped a little.

The surgeon came to see me, Prof Saeed from Manchester, who has 15 years experience of CI surgeries, and I am his 294th CI patient – so that’s a very experienced CI surgeon! He said all 16 electrodes are working and the operation was perfect, he was totally thrilled. He asked me to close my eyes and smile, to check that my face is working ok. I then had dinner, I was starving by then, and I discovered that I can still taste food – I had been told I might lose my sense of taste after surgery. I showed the internal part of the cochlear implant to Karen – I had a dummy one with me – and my nurse was absolutely fascinated by it. From the moment Karen and David arrived, I didn’t stop talking, and I was chatting to Amanda and a few other friends via my Blackberry, so I feel as if my hospital stay has been a very enjoyable social event with a good sleep thrown in!

THURSDAY 11PM

I tried to settle down for the night but there were too many pillows, the ward was too warm, my stockings were tight, the bandage was hurting, the tinnitus was roaring like a freight train in my new CI ear. A nurse spoke to me about my pillows but it was dark on the ward and she is dark skinned ….. I gave up at that point! Too tired to explain good communication tactics! I eventually got to sleep after 2AM.

FRIDAY 6AM

A nurse poked me awake – grrr – to take my blood pressure and temperature. Another nurse came to take the bandage off and she pointed out a big swollen bruise on my chest which I hadn’t noticed. Must have got that when the surgeon had to put his foot on me to keep me down …

I had breakfast of cornflakes, tea and toast. I went back to sleep and woke to see Karen there. The nurse removed the tubes and needles from my hand and we headed off to the xray department, where they xrayed my head. The xray is to check the CI has been put in the right place. I collected my discharge note, sick certificate, and confirmed my checkup date. I got dressed and had a quick lunch, then we left for home.

FRIDAY 1PM : Home 🙂

I was able to walk and my balance was good, but I felt quite unreal and had to walk slowly. I wore a pashmina to cover up the crazy hair, I’m not allowed to wash it for a week. The pashmina worked well as it was light and comfortable. The scar looks good, it’s a lot smaller than I thought it would be, and my hair will cover it anyway. I think it looks like a very professional job.

There isn’t any pain in the ear itself. The ear is numb and it’s sore going down the neck, and I have a sore throat/jaw/shoulders/head, bruises on the back of head and chest, it hurts to turn over or to get up, I feel like I’ve done 500 situps, but overall, the operation is a breeze really, and I wouldn’t have any qualms in going through it again for a 2nd CI if I go for that. I’d get to have another go at the drugs and pants thing. I think the worse thing was the tinnitus yesterday, I didn’t expect it to get worse, and to the level that it did, of a freight train, so that was a shocker.

What I found difficult during my hospital stay was communication with the nurses and surgeon – they were foreign and I couldn’t lipread them. Luckily, David can sign so he translated for me. It’s a shame the nurses and doctors don’t get deaf awareness training. It really is so important, so that the patient has a better hospital experience – it’s not just about the medical support, it’s about the holistic support. The psychological aspect is important as well. It’s like yin and yang. I had to constantly ask nurses to repeat, to look at me when speaking, to write it down. It was so frustrating and tiring.

SATURDAY

I woke up to an amazing thing …. silence. No tinnitus! It has been coming and going today but it’s quieter than yesterday. At this moment, as I am writing this, there is silence. It is bliss. I have had constant tinnitus all of my life and it really sucks, but you can’t do anything about it except learn to live with it. I managed to get 7 hours sleep and I feel much more clear headed today. Physically I am really aching and don’t feel up to doing anything. The numbness on the left side of my tongue has gone away and my lips are becoming less numb. I’m amazed at how much better I feel.

I’m really happy because it was a good surgery and the surgeon was thrilled, and by having the CI on the worse ear, I had nothing to lose and so much to gain. It really helped to have such great support throughout from my friends that have CIs, they have been through it themselves and are great at offering reassurance and advice. My hearing dog Smudge was totally spoiled when I was in hospital, he really enjoyed all the fuss, new toys and treats, and is probably wondering when I’m going away again!

I’m so unbelievably TIRED, but I am a very happy bunny! For now, it’s back to the sofa for tea and chocolate biscuits…





Monsters in my head

3 01 2010

I’ve had a sleepless night, worrying about the CI. I have just a few monsters in my head that won’t go away. Let’s get them out into the light of day, in order of size, biggest monster first ….

The implant won’t work as well as my hearing aid.
My biggest worry, and probably my most unreasonable one. I don’t believe it will be a magic wand and give me perfect hearing, but I don’t believe it will work that well for me as I’ve always been deaf. I keep reading about recipients who have done brilliantly but they have had hearing for some years before losing it, giving them a massive advantage over me. It’s a leap of faith and I don’t do faith. I don’t do religion. I believe in what I can see evidence of, so taking a risk like this is a biggie. Also, will my surgeon, Dr Lavy, be having a bad day and be ‘off’? Will my CI be one from the production line, not discovered to be defective until switch-on? Will they find out at switch-on that not all the electrodes work?

I am going to lose all my hearing in my left (implanted) ear.
I can hear *something* in my ear, which helps to balance my right ear, and makes me feel what I am hearing is normal as can be and balanced. I really don’t want to lose anything at all. Hearing only out of one makes everything seem skewed, and I feel like I am on drugs. It makes everything a lot harder to understand. So I am already mourning for the loss of the hearing that I still have. I might be able to retain some residual hearing, depending on which CI I opt for, but I feel that the operation will pretty much take away whatever hearing is left.

The anaesthetic.
Not that I’m going to die. might die. It’s about letting someone else pump such a strong drug into me. It’s about the going under. It’s about having someone close to me, my dad, who went under and never woke up, I still think about that every day. It’s about the sheer horror of it.

What the world will sound like Afterwards.
Not nice. Not normal. Will it ever be normal or nice again? Will I be able to enjoy music again? It’s 22 electrodes compared to 15,000 hair cells in a normal hearing ear, that difference in quality of sound really freaks me out. 22 will sound crap to a hearing person, but hopefully it will sound brilliant to me, coming from the other end.

Having a huge lump of plastic and a magnet on my head.
It will be bigger than the biggest hearing aid Ive ever had. Hopefully I can hide it with my hair. Hopefully I won’t hate wearing it. Hopefully it will stay on my head ok without me constantly having to flip it back behind my ear. Or I could decorate it and make it pretty, kind of like a badge advertising my hearing loss in the same friendly way my hearing dog does.

Facial paralysis and loss of taste.
Dr Lavy will use a monitor during surgery that beeps if he goes too close to the facial nerve so I am pretty sure I won’t come out looking like I’ve been liquified in Photoshop. But still…… and I LOVE my food, I don’t want it to taste weird or to taste like cardboard – but hey, I can stand to lose a few pounds!

Enough batteries to have my own landfill site.
I will have to think about batteries every single bloody day. Not just once a month when it runs out with a beep-beep-beep-beep and another hour or so until it dies. It will just die instantly. It will not last me a full day. I will have to remember to recharge batteries every day – at least everyone will always be able to tell when I’ve been out on the lash the night before and have been too drunk to remember to put batteries in the charger – I won’t be able to hear properly next day! If I go for disposable ones, I’ll have to make sure not to run out. But then again, this one is a bit like remembering to get food to feed the dog. Sorry, Smudge :-O

My hair will fall out.
This one probably seems stupid to all you guys reading this. Ladies, you probably understand. I have a real hate of having dirty greasy hair and wash it every day. I don’t think I can wash it for maybe a month afterwards. It’s going to look gross but I have a strategy for that – I am going to buy a buff or choob from Blacks and wear that during the day. Leaving my hair to get this dirty and greasy makes me think it will just slide out of the hair follicles …. ick.

Getting home after the operation.
A tricky one when I have no family around me and everyone else is at work. Plus I hate to ask friends who have a million better things to do. My interpreter has offered to come and take me home, however she lives in Kent and will have to drive right across London to the hospital, across London again to take me home, then across London again to get home herself. I could go on my own but will probably fall down a tube escalator while crying my eyes out, haha. The last time I had anaesthetic was when I had teeth out to make room to straighten the others. I was very dizzy afterwards, kept falling over, and couldn’t stop crying. Apparently the crying was a natural reaction to the drugs. Or I could stay overnight in hospital….. yuck.

So there you have it. My own little book of horrors. I’m shutting them back in the cupboard – for now.