My Cochlear Implant Journey

This will be the first in a series about my deafness. Travelling will test me to the limit particularly in a foriegn speaking country and I hope this blog will inspire many deaf people to seize the day and NOT let their deafness put a limiting factor of their fun, enjoyment and experience!

First of all, you need to understand my deafness 🙂

As you may have realised, I am profoundly deaf in both ears in which I wear a hearing aid in one and a cochlear implant in another. Both enable me to listen fantastically and hear everything that goes around me.

Recently, I went through a Cochlear Implant Operation in August 2011 on my ‘dead’ ear (couldn’t hear even with hearing aids) and 4 months later, I am able to get by and hear even more than I could with just the use of a cochlear implant  See below about my journey:

‘Last year, after failing to improve my degenerative hearing (caused by Pendred’s Syndrome) with a new set of hearing aids, and also based on the experiences of my friends who have undertaken what I decided to do, I ultimately believed that a Cochlear Implant on my ‘worst’ ear would be the best step forward.

So on the advice of my hearing services; I made an appointment with the ENT Consultant through my GP. This took rather a long wait and by this time last year, the ENT Consultant could not believe I did not have a Cochlear Implant already and quickly organised some appointments to gather some test results and also to refer me to the National Cochlear Implant Programme at Ropewalk House, Nottingham.

Very soon, I had an MRI Scan, which pretty much determined a symptom of Pendred’s Syndrome showing widened vestibular aqueducts in my Cochlear, and more importantly that my Cochlears were both pretty much implantable.

Meanwhile, while all of this was happening, I was still not 100% convinced that the Cochlear Implant would work for me and it helped that the medical profession said that I could pull out at anytime of the programme if I ultimately decided if it wasn’t for me. I viewed at this point as a fact-finding mission for me as I couldn’t find enough information to make an informed decision outside of the programme. However, as time went on, I became more and more convinced it was for me.

The hardest part for me was convincing both my parents to support me in obtaining a Cochlear Implant. Both were not sure at all and they weren’t happy that it was irreversible. I knew that I was 25 years old at the time and I could do whatever I liked, but they raised me and were very much involved in improving my hearing as a child. So their support for my decision would greatly help and convince myself that I made the right decision.

I finally got my first appointment with the NCIP in February this year and I duly attended and went through a lot of hearing tests, discussions and many more, but at the end of the day, I was then informed that they would not be able to give me a Cochlear Implant due to my hearing on my left ear being deemed better than the standards set by the funding guidelines. I argued that it was for the right ear as I couldn’t hear even with a hearing aid out of it, but for some reason the hearing of my left ear meant I couldn’t have one at all in any ear. I was absolutely crushed and I felt that ‘this is it, that’s how good my hearing is ever going to be.’

2 months later, I got a surprise in the post that NCIP had managed to obtain enough funding for me but I needed to go back for more tests. This time, I didn’t raise my hopes at all, and with a degree of cynicism, I went back to Ropewalk, Nottingham. After a few more tests, they essentially agreed that they will put me forward onto the waiting list once all the requirements have been met. Assured that everything was going in the right direction, I invited my parents to both come and find out themselves about the Cochlear Implant Programme particularly to the Group Meeting day when we met other Cochlear Implant Users and they shared with us their experiences in preparation, the operation and how they hearing changed afterwards. This essentially helped my father understand how beneficial the Cochlear Implant would be as I was pretty much 100% convinced that I wanted one. My father attended with me to every appointment afterwards and he always said to me how much better he felt after each one and fully supported me to go for the Implant, also with my mother’s support.

After, signing my consent forms for the operation, it was a waiting game to see when I would get called up! I was placed as a back-up throughout June and most of July. I went to the DELTA Summer School for a few days and told people I was on the waiting list. I honestly believed I would have to wait until the autumn for my operation. But it was to my extreme surprise when I returned from a holiday to Munich In August that my operation was scheduled to take place 2 days later!

I got a very short haircut done to do away my long locks of hair as the surgeon would have needed to shave a part of my head above the ear, and arrived in Queen’s Hospital in Nottingham at 7am starving hungry as I had nothing to eat since 6pm the night before as a requirement for the operation. The Surgeon and the Anaesthetist went through the procedures with me and off I got changed into my flattering sheet and was duly escorted to the operating room. I got knocked out rather quickly and I do remember falling asleep and my vision going dark…I thought they were annoying me by asking the same question ‘What year were you born?’ Apparently, I was giving different answers…’1985’ ‘1984’ ‘1885’ ‘1775’! I’m sure if the last answer was correct, I would be in the Guinness book of records!

Then I woke up! 6 people were stood around my bed thinking I was going to leap out in confusion, but instead I offered a shaky grin and murmured..’alright?’ After ensuring I recovered fine and said that it was a successful operation, I was transported back to the ward to my relieved Mother and Father waiting for me. They remarked I was bright as a button and very soon afterwards, I was on my feet walking to the bathroom. I managed to glimpse myself in the mirror and saw the amazing headpiece they had on my head to ensure I didn’t knock it about!

The next day, my parents took me back home and I spent 2 weeks on painkillers and before I knew it, I was back at work. I had the internal parts in but still waiting for my scar to heal and the swelling to go down before I could be handed my external parts and ‘switched on’.

Then 1 month after my operation, I went back to Ropewalk in September with my father and I was ‘switched on’! As the audiologist flicked the switch, a symphony of crackles and beeps swelled in my right ear and seemed to beep or crackle in sequence to the audiologist talking. After a few minutes, they calmed down slightly and I began to hear her voice come shining through! For 15 years, I haven’t heard a voice properly in that ear and yet I was hearing it now! Then my father spoke, and I looked at him funny. Surely he didn’t sound like that…a loud person! I’m often telling him off for mumbling or being soft spoken that I can’t hear him properly. Yet I was hearing him loud and clear! Apparently, my father said I had a huge grin plastered across ear to ear throughout the whole switch on appointment. The audiologist was very surprised how much I could hear already, particularly environmental sounds. I could hear the tap running, the rustle of clothes, footsteps and many more! So throughout the next 2 weeks to my next ‘tune-up’ I was hearing lots of new things or forgotten sounds.

It was a completely new world for me and I was often asking people what the sound I was hearing and before I knew it, I was hearing different bird calls, high-pitched whistles, the wind outside, a mobile buzzing on a table many metres across the room, the car indicator sound that was a revelation to me, and I could hear my music miles better than I could with the voice coming loud and clear through my headphones.

Music was the one thing I was particularly concerned about. I love my music so much and I brought myself up listening to music and too often people would find me dancing to tunes and I’m lip-synching along…but would the cochlear implant change all that? I needn’t worry! I can still do that but this time I don’t have to stand for at least 30 seconds figuring out what the song is…now I can immediately identify a song and understand the words come clearly. It’s amazing!

After several re-tunes I began to incorporate my hearing aid back into my left ear as I wanted to see what my hearing would sound like with both the hearing aid and the CI.  A lot of people have said it is really uncomfortable hence to just wearing the cochlear implant. However, I believe it’s the best way for me. But it’s not to say that either is better than the other generally. I think each supports the other by adding in the new sounds or experience that the other could not provide. I think the hearing aid is good at giving the sound depth and volume to a sound that the cochlear implant cannot do at the moment but the cochlear implant is very good at the clarity, range, awareness, direction of sounds, and picking up new sounds! Sometimes I can hear new sounds through the CI for example, I was talking to my mother in her living room and she saw I was straining my neck to look outside the window to the road thinking that someone was vacuuming their car as I was hearing an unidentified sound that sounded like a drone. But she informed me, to my delight, that it was actually a cargo train going by on the embankment on the other street. I completely forgot this sound and not heard it when I was a child when I just dismissed the sound as annoying…well it certainly wasn’t annoying to me! It may have been annoying to my parents that weekend that I kept jumping up and down and yelling ‘Train!’ everytime I heard it!

I’m waiting for my 3 month re-tune next week, which will hopefully add more depth to sounds I’m hearing in the CI and find out more what could be done to improve my CI Experience.

But the CI has by far exceeded my expectations and I wouldn’t change it for the world as it’s massively boosted my confidence, my understanding of conversations in groups and most of all, re-introduced me back onto the telephone particularly at work in which I have to receive calls from unknown people about unknown topics almost on an hourly basis! I still struggle at the moment with names and I have become military in my conversation as I’m spelling out the word for them.. ‘alpha, tango etc’ but over time I seem to be getting better.

So CI? = Cochlear Implant? Nah…It’s Critically Invaluable!’

Ed xx

This post was written in November 2011.