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…





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!