I was born with profound deafness in both ears. I had good usage of two powerful
hearing aids until I was 22. Sadly, the good hearing I had through my hearing aids
deteriorated. I was unable to do many things I used to be able to do and relied heavily on
lip-reading and making sense of the little residual hearing I had. I spent a lot of my
time straining to hear what was being said to me, falling asleep with exhaustion as a
result. I also had the onset of tinnitus which made matters worse.One of the things I was
able to do before this happened was able to hear on the phone and I had a interest in
music.
I am now 24 years old. I used a hearing aid on my unimplanted ear right up to switch
on, this is now gathering dust! This phenomenal account you are about to read can
only be put down to the short space of time it took me to obtaining a CI (2 years) and
having a good auditory memory of sound. I was switched on, on the 20th January 1999. I am
a Clarion S series user. you can contact me by e-mail at bddl@cix.co.uk
I went to the hospital for some tests for research purposes. These were rather boring
but quite interesting, I had three long questionnaires to go through plus a verbal hearing
test where I have to work out what is being said verbally. I really HATE that test. It
gets me nowhere!!!
The exciting bit was when I went with Linda (who is the head of audiology) Mum and Dad
came too. She showed us three implant devices that would be suitable for me. There was the
Nucleus 24 which had 4 programmes and 2 coding strategies (SPEAK and CIS) This was a nice
model but looked rather fiddly if I were to change programmes or volume/sensitivity as
there are loads of buttons to press!!.
Then came MED-EL which only had 12 electrodes but didn't have much in the way of
features so we dropped that one.
The third one was Clarion by Advanced Bionics The processor is a nice sturdy one with 3
knobs one for on/off and programme selection, one for volume and one for sensitivity. The
microphone is contained in the transmitter coil which eliminates the need for a piece of
plastic sitting behind my ear, which I tried and it got in the way of my glasses!
So I have to choose between the N24 and the Clarion. Will have made the decision by
Tuesday as the hospital need to know so that they can order the implant ready for my
surgery in January. Mr Grahame (the surgeon) has yet to finalise surgery dates for the New
year so I hope to know by mid to the end of December the definite date.
28th November 1998
A huge development occurred today. The hospital phoned to ask if I would go in on the
7th December for my CI surgery as there had been a cancellation. I eagerly accepted as it
beats waiting till January.
Monday 7th December 1998
My time for admission was for 1pm in the afternoon. I arrived at the hospital in good
time and I was asked to report to the Ward I was assigned to (Clamalt Jones). On reporting
to the nurse's station, I was informed that I may need to go back home for the night and
return the next morning due to a Bed shortage.
I was taken to the Day room and was asked to sit and wait for a nurse to come and see
me, I waited for nearly 2 whole hours until someone came to admit me at 2.30. Sheila asked
me the usual questions that are asked for admitting a patient into hospital.
I was then summoned for blood pressure and weight before seeing another nurse for heart
and info about the anaesthetic. And to sign a form saying that I will go ahead with the
operation.
Mr Graham came to see me to tell me about the op which I already knew about. I asked
him about the risks which were too trivial to be worth worrying about.
My friend Joseph popped into visit me while I was waiting all this time. My Parents
dropped in and stayed with me for a while. Followed by another friend (David)
Whist I was eating supper. My nurse came and told me that a bed has been made available
At least I wouldn't have to travel down at 7am the next morning.
Tuesday 8th December 1998
Waiting for the OP
My father came at 9.30 to keep me company before being taken away for the big
operation. I had a fairly comfortable night, despite the fact that Hospital beds are
uncomfortable compared to the one at home! <LOL>
My OP was scheduled for 12.30pm, but was delayed a couple of hours as the surgical team
was a little behind, well CI ops is a delicate procedure and cannot be rushed!
I was wheeled off to the operating theatre at 2.30pm and was taken down in a lift to a
small room, which adjoined the main operating theatre. I was wired up to a heart rate
monitor and blood pressure, air support came when I was "dead to the world" The
next minute a needle was being inserted into a vein in my left hand, and a tingling
feeling spreading through my entire body.
Then pitch darkness which seemed like 10 to 15 seconds, perhaps a while longer. Then I
became aware of something heavy wrapped around my right ear and head, I came round feeling
very groggy and light headed and briefly focused on my parents, and I asked them how the
op went. I vaguely saw mum saying that the operation was a complete success with full
insertion of the electrodes plus the implant gave out a good signal when tested. I was too
groggy to work out how an earth they were able to test the implant if I was not awake
enough to give feed back! I did not remember anything about being woken up in the recovery
room and coughing the tube up which aided my breathing. I drifted off back to sleep and
felt someone taking my blood pressure. A came round again still feeling light headed and
with a most strange taste in my mouth which I rinsed out and felt very dry and thirsty, my
mum said I had to wait till 8.30pm before drinking. I went back to sleep and awoke to find
some very good friends of mine standing at the foot of my bed. Feeling a little less
groggy I managed to talk for a couple of minutes before waking up at 7.45pm feeling a
little more refreshed and I had to ask my mum to recap on how the op went as I didn't
register it the first time round. I was pleased to hear that the implant stood a chance of
working.
As I still had pain killers in my system I felt very little pain and a tad bit of
soreness. I was given some more pain killer to keep it that way. The anaesthetist had
obviously selected a nice combination of drugs to knock me out with as I didn't feel sick
from the anaesthetic. Around 9pm I had a sandwich and a cup of T which went down a treat.
During the night I had a fair bit of soreness which woke me up and I had difficulty
getting back to sleep. I summoned a nurse with a bit of difficulty as there was no bell
push! LOL. I managed to get back to sleep and the pain subsided later on.
Wednesday 8th December 1998
My attempt to walk went very well. I felt a bit dizzy but this went after a few
moments. Apart from that my balance was fine. I found that I had to move around a bit
slower otherwise I feel funny.
I felt a lot better than yesterday. One of the doctors came to take off the bandage and
to look at my scar. She was satisfied with the result and was happy to send me home. I
went for an x ray before being collected. I was given a couple of bottles of pain killers
and a list of precautions to take.
Conclusion
Some final thoughts and reflections as a result of my CI OP.
Has there been a leap in the way CI ops are carried out? I may be one of the few people
sitting here at home with no bandage round my head. My doctors and nurses Have said that
the op went very well. My op was a very short one as Mr Graham had little trouble getting
all the electrodes in, plus there was no blockages in the cochlea. I am thankful for his
expert hands and skill for performing a very professional job. Also the stitches that were
used to stitch my small wound up are dissolvable, there is no need to have them taken out.
Now to wait for switch on, which will be in roughly 5 weeks time. The next update will
be then.
I hope that you have enjoyed reading this report. Please feel free to comment with
comparisons from your op experience or any thoughts, thanks.
Ben's Hook-Up/Switch-On Report
Now, where do I start? I arrived at the hospital in good time for my appointment; my mum
and dad came as well. My Audiologist came and got me after setting up the computer. She
explained what she was going to do, first thing was to make sure that the magnet would
stay on my head. The magnet came off so a stronger magnet was put in. Then came the
connection of the speech processor to the computer and then gave time for the computer to
initialise.
After this period of silence came the first of the sounds to programme the processor,
apparently I had managed to pick up the very first of the frequencies the computer sent
out. The first range of sounds were the very soft sounds that I could hear before going
completely silent, then came the loudest of volume that I could tolerate with. Then came a
series of sounds which I needed to tell my Audi when they sounded the same strength.
Then came the big part, going live. My Audi told me to turn my volume up gradually until I
could hear what was going on in the room. This experience was really quite hilarious! The
first sounds I heard was a continuos series of "bubbles and squeaks" it sounded
so funny I burst into a fit of laughter which sounded even weirder. My mum and dad were
saying the months of the year out loud. After a few minutes my brain started to
"click" and begin making sense of this drivel I was hearing. I was hearing a
combination of "bubbles and squeaks" and "natural sounds" It was
really quite fascinating, my Dad clapped his hands, it sounded like they were laughing.
Once outside in the corridor, suddenly everything went quiet! Well, my mike had fallen off
my head and I needed to put it back on. I could hear my footsteps on the carpet and my
trainers squeaking on the polished floor. I could hear door hinges squeaking trip to the
loo was a funny experience. The toilet being flushed sounded like a mini waterfall and I
could hear the tank filling up afterwards. Running tap water gave off a similar sound,
where as the hand drier sounded like a mini thunderstorm!
Next challenge was the traffic outside as we went to a sandwich shop for lunch,
surprisingly, I could hear the "Roar" of the traffic, which didn't bother me too
much. Once in the shop, I heard some more "bubbles and squeaks" of some people
talking and so on. I heard a plate clanging and experimented with mine to hear the effect,
I was getting a bit carried away and one of my friends (Elsie) suggested that I stopped
before I broke the plate J I went across the road to where one of my friend's worked and
went into his office, in the corridor to his room I could hear the sound of people
talking, not speech, just sound. In David's office (my friend) David sounded like
"bubbles and squeaks" but after 5 or so minutes I was able to hear some of what
he was saying. I was fascinated by the sounds of the fax, the dialing, depression sounds,
and ringing sounds were amazingly clear and distinct.
Then I went back to the hospital to see Kathy my audiologist to go through another
programme, to tell you the truth not much difference apart from a little less
"bubbles and squeaking" noises.
Coming back home was a different experience. Since the traffic was much heavier on the
walk to the station all I could hear was a constant stream of "bubbles and
squeaks"L most disorientating as all the vehicles sounded the same. In the station, I
heard a voice of the announcement, no words, more continuous "bubbles and
squeaks". The sound of the incoming train frightened me at first, as it was so LOUD!
On the train the same babble of sounds. I need time for my brain to get used to all that
noise!
Back home in the quiet I find I can pick up far more sounds, I've not have a chance to
explore yet but will report back soon. I can hear the sound of the keys typing and my
sister next to me when she calls me. An adventure, which has just begun which, will
hopefully progress over time.
Experiences, thoughts and comparisons please, how were you on your first day, I'm amazed
how quickly the brain can adjust to the new sounds.
After Switch On Report
I started out with the SAS coding strategy, which worked marvellously, until I tried CIS.
More on CIS later.
What can I say about my hearing improvement, this being 1 week after switch on? Please
friends, be warned, what I am about to tell you may seem hard to believe, but all what I
am about to write actually happened.
Thursday January 21st
It's only been 1 day since I sent my hook up report, But I'd like to report a change in
the way I'm hearing things. How many of you experienced "the morning after
effect?" When I put my implant on it took a few minutes for my brain to initialise as
at first were bleeps and bloops, the bubbles and squeaks that I was describing had ceased.
Outside overall sounds were less confusing. The sound of an approaching/passing car was a
Gurgling like sound. Women's voices now sound Like Mickey Mouse! All high and squeaky,
sometimes A little too squeaky to my liking as it set me off in a fit of giggles on the
train. You may remember that going back home the eve of switch on, I was unable to
identify the sounds I was hearing. Today I was able to hear the warning signal which beeps
when the doors are about to close. I also heard the sound of the wheels over the tracks.
On the London underground I could hear the train doors opening and closing of doors and
the screech of breaks.
Music
Tunes sound similar and close to how I remember them. Music with singing in it sounds like
it has been badly recorded. The voice sounds distorted. I attended my first classical
music concert ever in the evening I heard squeaks and squeals and a bit of melody. But I
enjoyed it! Odd isn't it? The choir sounded ok could not make sense of the words.
The other one is the TV, I experience a tunnel like sound, the voices seem very distant!
And the women squeak away like anything, the men aren't too bad. I may need to ask my
audio to tone down my high frequencies a little to See if it helps a bit.
Friday/Saturday January 22nd/23rd
I went to my local synagogue on Saturday, but found I was very out of tune, everything was
garbled, but I could tell when the congregation was singing and managed to tell the
difference between a child's and man's voice.
After the service, this particular week there was a series if talks to give insight and to
learn more about our religion (Judaism). I chose to stay in one place, which had the
fewer echoes. The "Talk" turned out to be a question and answer session. The
Rabbi spoke very quickly which made it difficult for me to follow and I'm sure some
hearing people were having trouble following also! The lovely thing was that I was able to
hear the rabbi talking, not getting everything but 50% of one answer, and was also able to
tell when someone behind me was asking a question, so I was able to turn round to see what
was being said.
The noisy environment of the "Elevenses" (better known as "kiddish")
was difficult, background noises were overwhelming!
I tried the "talking book" Paddington At The Station" which was a cassette
and book. Surprisingly I managed to follow word for word, getting lost on 2 pages; this
was reduced to one on the 3rd attempt (Sunday).
I noticed, when watching TV there was an improvement in the sound quality. I was able to
follow quite well with subtitles (captions).
My Mother suggested we played "Simon Says" to test my ability to hear without
lip-reading. This excise was great fun. The "miracle" here was that I was
able to identify simple instructions with my eyes closed! Some sayings sounded really
strange which sent me into a fit of laughter. Once I had seen the words on people's lips I
was able to remember some of the commands again when they came round. The results varied.
As the saying goes "practise makes perfect". To make things more of a challenge
a friend of mine, her name is Susan, suggested that I try and work out who said the
command. This needs even more practise.
Sitting around the dinner table. I was able to follow and take part in conversation. This
is something I have never been able to do.
Speech is getting easier to understand. However I was not yet able to hear my own voice. I
needed amplification here.
Music still varies. It sounds good but again voices don't.
The Phone.
Many people may think that this is early days, and the phone is out of bounds. So
being brave, I decided to give it a go, well I had nothing to lose. I was able to hear the
recorded 1471 message giving the number of the person whom called last. With an actual
phone call, the voices have a tunnel effect. At the time of writing this, I am now using
the CIS strategy. CIS is better over the phone and I was even able to pick out some words.
The morale of this experience is that if you don't try you'll never know. Please see
Monday 25th Jan for CIS experience.
Monday January 25th
I was given CIS coding strategy to try today. I can report that sounds sound a lot more
natural to me and much less electronic sounding. People's voices sound like they are
talking naturally and background sound is much more easily identifiable, and more
bearable. People' voices sound too quiet and I need to crank the volume up to hear them,
increasing the background noise in the process. I think I need some amplification overall
for one map (programme) and general amplification overall for the other.
I've kept that brief as all I have to report is a big improvement overall as the
"echo" and "gurgling" sounds have gone. Also my Mum and Dad have
started talking to me normally, this is a bit harder as although I can hear them, I miss
parts, which either need to be repeated or filled in based on what I have already heard. I
think I need to get used to this since I've been used to hearing my parents talk to me in
deaf tones. My Mum said to me that she had to talk in a forced voice for many years.
I attended a meeting this was the AGM for the Jewish Deaf Circle. Lo and behold I got 90%
of what was being said, there was an echo in the room which was working to my advantage as
it carried the sound across to me. Voices were quiet as described previously.
Monday February 1st
My friends on the CI forum have been telling me it's going to get better! (They couldn't
be more accurate.) I'm still reeling from the huge progress I have made since switch on.
I went to the hospital again today to see my speech and language therapist Linda to tell
her how I've been getting on. She was astounded and very pleased to hear that I've been
progressing so well! She suggested that I practise listening to sentences to pinpoint the
areas I need help with, as I reported that I was finding the standard training exercises
way too easy. She also equipped me with the patch cord for me to be able to plug directly
into walkmans and CD discmans . She also gave me the pickup coil for the phone that could
also be used to tap in to loop systems (FM systems).
Back at home I went over to the TV to try out the pickup coil, this worked really well and
made watching TV much easier. Next I went off to try the patch cord. This again helped to
make music sound a lot better and clearer for me without any outside distractions.
Then came the big test the phone, you may remember from my earlier update that the phone I
found difficult. Well, I asked mum to call me on the mobile from the front room to see if
I could hear anything. I hooked myself up and to my amazement, I was able to hear Mum
talking word for word, of course had to speak a bit slower than normal. I tried my sister
same result. My brother who speaks very quickly on the phone was a bit harder. I've yet to
try Dad. Next it was upstairs to the phone in the computer room to try some
different people. First came a very good friend of mine named Susan nicknamed "my
second mum!" She was really pleased to hear me talking on the phone after 2 and a
half years or more of not doing so, I heard her word for word. Then came my Best friend's
(Joseph) family and himself. His father answered the phone and this bit is amazing, I've
only heard his voice once in person, but I manage to recognise his voice as I've never
been able to hear him on the phone before as he speaks very quietly. Then I spoke to his
mum. I didn't recognise her voice at first but managed to hear her but was more difficult
due to her accent. Then came Joseph, we spoke for 15 mins, but I had to ask him to
slow down a bit and repeat a few sentences to me.
My conclusion? Yes, my hearing has got better, but this is amazing! I am now back to where
I was 2 and a half years ago with my hearing situation, this is what my hearing used to be
like before the sound deteriorated in my right ear with that dreaded onset of
tinnitus. Yes I was able to hear on the phone, but the implant has made some marked
improvements to my hearing.
So there you have it.
The text in these pages remain copyright of Ben Leigh please feel free to e-mail him at
ben.leigh@cwcom.net if you would
like to use this text.
