I have had my Cochlear Implant for 3 1/2 years. Now 22, I was born a normal healthy baby, but at 5 months I had meningitis, which left me with bilateral profound hearing loss. From the age of 18 months I wore a body worn aid, before moving onto BTE’s at the age of 2. I used lip-reading and visual clues to help with communication. Then from about the age of about 10, I then just wore one HA in the left, as I found I had no hearing at all on the right. I attended mainstream schools, with a hearing-impaired unit attached, in Taunton, Somerset for my primary and secondary education where I had support and used a radio aid, which I loathed! I was 10 when I saw a documentary on TV about cochlear implants. I was shocked by the sight of the surgery, and the fact of drilling into the skull!! It looked frightening. My Dad asked if I would like one –I said NO!! When I was 17, I was assessed to see if I was a candidate for a CI. At the time I did not see any harm in finding out what it involved. Everyone kept saying to me that I have not got very much hearing at all, that I had nothing to lose – but I did not believe them as I felt I was hearing enough and my HA’s were my lifeline. Even when told that with a cochlear implant it would be much better – I did not believe them, as at then I could not possibly believe what I was missing. Looking back now I can see how little hearing I had.
I made my decision May 2001. A dilemma I had to face was which ear to be implanted. Originally, I was hoping that the right side would be implanted, meant I have something to fall back, should it not work or failed. However, they felt that the left, which I had my HA in all my lifetime, would have better simulation – better chance of working. It meant I would lose my residual hearing in that ear – meant I would not be able to use HA again. Although I was worried about it – a friend told me – forget all your fears, worries etc and just focus on actual thing. That was what made me decide to go for it!
It took about 18 months from first referral to surgery which I was dreading. The night before surgery was the longest of my life! The following morning was taken to Theatre – I can clearly remembering wearing my hearing aids for the last time – I wanted to relish the those last moments of the hearing I had left – as I knew that I would not be able to use them afterwards again for rest of my life. It a bit like ‘end of an era’ for me !! I cannot tell you how scared I was! I remember blacking out, and then it felt like only a moment I was waking up. At first I was not sure where I was and remembering panicking and felt trapped as I had this bandage, oxygen mask, drip and all these wires all over the place!! Then a nurse put up a sign, right in front of my face; saying ‘Alison, you are in Recovery – it all over’. I cannot tell you the HUGE relief – I was pleased it was over and I made it! However I did have a lot of tinnitus – which I found annoying, this lasted for some months, even now I do get an occasional tinnitus.
I was apprehensive, worried and curious about the switch on but I was also excited! I could not wait. Then the big moment came on; I tried really hard not to get my expectations high. I heard NOTHING at first then it started coming in – only loud unmeaningful noises – it sounded unreal and awful. I thought it this it? My hopes went rock bottom. I hated it, but tried really hard not to get upset and to stay positive but it was easier said than done, but I can tell you I was let down and disappointed. At that point I really wanted my hearing aids back – as I could hear more with them. Nothing made sense. I kept thinking what have I done? I wanted my old life back, but I have no choice, except this, or total deafness! I had no idea what to expect only told that it would be very different and not pleasant to start with. No one can tell you what it is like, until you experience it for yourself, as everyone is different. I was told that as I lost my hearing at 5 months old, meant I have not had any memory of normal hearing, meant I have had to start from scratch again – its like being a baby again, this would mean that everything would be completely new for me. This is because it was going to take longer for me to accept them. It wasn’t until about a good year before I started to appreciate the new sounds coming through. Suddenly I was getting a lot of new sounds each day.
I have just had my CI Annual Review on 16th Nov. 2004. I could not stop smiling all day at my results!! This cochlear implant is now part of me – without it, I am lost. I cannot imagine not using the processor. I can say now I am very pleased with the results and the fact that I have got this implant. I have been too scared to use the phone due to lack of confidence mainly but recently I’ve had to call work on my mobile whilst stuck in traffic, as I would be late. I then had a 15-minute conversation with my Mum, again on my mobile and this went well. Last year I got myself a CD player using the cable to input directly to the processor – again I have enjoyed music – I can hear a lot – mainly the rhythm. I can also follow the car radio especially whilst waiting in traffic Last week for first time, for some reason the subtitles weren’t working on a TV programme but I found I could follow a lot of the conversation and WOW!! I had never done this before! Right now I am listening to the weather on the TV with my back to the TV – typing this. It sounds very clear and I know I’d never get this, if I still had HA’s!! This is way beyond my expectations!! I have made more trips to the cinema in the past 12 months since I had the although I do not pick up the full context but can follow it a lot better than before with HA’s.
I know this is not perfect, but I am more than happy with this – it is far more than I had hoped but if I had chosen not to have the implant 3 years ago, then I would be missing out on all this. A lot of people have also stated that my speech has improved a great deal and people who I have not met before implantation sometimes don’t realise I have a hearing loss. Many people, especially my colleagues whom I have been working with for 2 and half years, have said to me they forget I am deaf! Since I have been implanted I have had regular appointments with various members of the CI Team and I can’t thank them enough! I have found this a long, difficult ‘ups and downs’ road; it has taken me 3 years to get to the point when I feel I am happy with all this. The CI team all have been great to me and were always there if needed.
Words of advice – get a lot of information, ask loads of questions – no matter how stupid they sound, talk to Team, other CI users, attend the Users Groups which is a very good support network, weigh up the pros and cons of having an implant and not having an implant. You really have nothing to lose, but only you can experience this. People can only say what it could be like because they have been through it and the professionals can only comment from what they hear from previous implantees. Have a lot of patience and however difficult it is, keep your expectations low, and GO FOR IT!