"The best thing ever!"

The CI group meeting was scheduled for 2pm today, I took a half day from work to attend, but forgot how bad the M50 was at lunch hour especially with the road works approaching the M1 that I didn't get there til 2:35pm! I arrived as Martin was almost finishing his story. I was so disappointed to have missed most of it but it couldn't be helped... Martin became deaf later in life and was 'very happy' with his implant, his only disappointment was music. He couldn't make any sense of it; was all 'garbled noises' to him. He urged us to go in with an open mind, to 'expect nothing' go with the flow and do not compare yourself to one else. His ‘biggest achievement’ was being able to hear on the phone again via the mobile bluetooth loop, to join a group of friends in the pub and not feel ‘left out’.

There were four other people present, going for a CI in the next few months; all males. Two were younger while the other two were older than me. One of the lads is currently in his leaving certificate year - what a stressful time to get implanted! Two were Irish Sign Language (ISL) users, like myself, and actively involved in the Irish Deaf community. We had an ISL Interpreter present for communication and the CI team took turns providing speedtext.

Fiona, the other CI-Implantee arrived shortly after me with a huge smile, brimming with confidence that made me warm to her. I like people who are positive, upbeat, chatty and assured. Jaclyn introduced Fiona as one of their 'successful implantees to date...' Fiona then launched into her story, telling us how she had a congenital mild loss that appeared when she was 9/10 years old and got progressively worse in her mid-teens; ended up profoundly deaf by the age of 19. From my work in DeafHear.ie, I am very aware of the negative impact post-linguist hearing loss has on people, especially Teenagers. This is the worse age to experience a hearing loss, you lose friends as you can’t keep up with the peer group, educational opportunities are hampered and family relationships are further strained with the angst-ridden-teen being isolated and left out more - leading to teenagers going totally off the rails. But Fiona seemed to have weathered this really well.

I got butterflies when Fiona mentioned that had her operation last November 2008, with switch on after Christmas, she was 9 months into the AR programme and "loving it!". Could this be me in a year's time?!

I was amazed as Fiona ran through an impressive list of what she 'can hear now' with the CI - down to the fact that she no longer had to look at people as she talked to them. As if to demonstrate Jaclyn asked her a question and she answered correctly without looking at Jaclyn. Amazing! More so was her 'new found love for music', which she was listening to via the T-links on her iPod.

The biggest measurement of change was obvious from her Word Recognition Scores - she went from a '<10%' pre-CI, to 27% one month post-switch on, to an amazing 84% 3 months post-switch on!

Like Martin, Fiona also warned us to 'expect nothing' in the first month - admitted that her 'switch on' was very disappointing, she 'hated' the sounds she was hearing in the first few weeks, it just wasn't 'normal' to what her brain remembered from her childhood but little by little she overcame the dislike to adjust to the new CI and become the person telling us today that couldn't imagine life without the CI "... it's the best thing ever!"

Hearing Fiona and Martin's CI experiences made me more optimistic about getting the CI. My only disappointed with the meeting was the fact that both CI experiences were non-ISL/Deaf community involved so some of my questions remain unanswered. Guess I just have to find more CI experiences myself and get the answers I seek.

So what IS a Cochlear Implant?

Basically: A flap of skin is lifted behind my ear, and a hallow will be drilled into my skull for the electrode to sit with a small hole drilled into the ear canal where the array will be poked down and curled directly into the cochlear. The array will damage the cells inside the cochlear that provide remaining residual hearing I currently have, while attaching itself to the auditory nerve. When the external processor is switched on, sounds will not travel through my ear canal as before, but via the processor, through the electrode, down the array directly into the nerve and up to the brain.

Once the implant operation is done, I won't be able to hear in the implanted ear. While the scar is allowed to heal for a few weeks, I still won't hear anything. The processor will be 'switched on' after 4 weeks and I will get a barge of sounds, but I'm told that this 'sound' may make no sense to me at all. As the way people 'hear' with a CI will not be the same as how normal hearing is perceived. I will undergo aural rehabilitation process to 'map/programme and relearn/translate a host of new sounds.

The length of time from the actual implantation to the time when CI actually 'starts working' can be as long as 9 months... a lot of hard work ahead... Gulp! Wish me luck!

Beaumont have invited me to a group meeting on Wednesday 26th August with other people going for the CI in October/November/December to meet a couple of CI Implantees and get more information on the process and find out what the CI was like for them. Looking forward to that!

The Road to CI Approval...

Today, 6 years after I was referred to the Implant Programme, I was finally considered 'within the criteria' for implantation and will get a Cochlear Implant (CI) in November 2009!

I was stunned speechless when I got the news... Must have had my best poker face on too, Jackie had to ask if I was 'okay', she pointed out that 'most people' are usually 'visibly taken aback' when they are told how soon their CI operation would be and I wasn't 'appearing at all THAT shocked'... I was taken aback - I was shocked - I just wasn't showing it! LOL!

It’s been an emotional journey to this point. More so in recent weeks since my audiologist asked at my annual assessment in June if I was still interested in getting the CI, so she could refer me to the surgical team for a decision on my 'borderline criteria status'. I was hesitant at first, but said yes, half-expecting to be declined again.

I have a bilateral profound hearing loss since a severe bout of Meningitis at 2 years old that left me in a coma for 15 days, on waking up I kept touching people on the lips as they were talking to me but it was few months before anyone copped on that I was deaf. My right ear is marginally better than the left, with the residual 'ability' to distinguish some speech.

The audiogram here from the first Assessment in October 2005 shows my hearing ranging from 80dB downwards. Normal hearing varies within -10 to +10dB range; anything 25dB or more is considered a hearing loss.

It took 18 months from the initial GP referral in 2003, before I was called for my first appointment in October 2005, where it was discovered that I had 39.5% word recognition with my old hearing aids. This, along with having a profound hearing loss, put me into the CI criterion that was set at 42% word recognition. My MRI was clear and I was all set to meet the surgical team for the next step.

Noticing my old Analogue Hearing Aids, the audiologist suggested I try the new digital aids specifically designed for a profound hearing loss. Accepting the new hearing aids, I found them brilliant but not as 'satisfying' with some sounds as the old analogue aids.

Before I got my Digital Aids: I never knew the EazyPass Tag 'beeps' as the car passed the Toll readers on the M50!

While the new Digital Aids DID open a new range of sounds I never heard before, I found the speech notes had flattened to an extent... To explain this, the chart above demonstrates the difference as best as it can be described*. The Analogues basically amplified what residual hearing I had equally across the spectrum, while the Digital counterparts are programmed for each frequency, giving the boost only where it was needed to produce an 'evener support' across the spectrum. (*Note: this it is not an accurate representation but it gives an idea how both hearing aids worked for me).

I was totally gob-smacked at the next CI Assessment, just over one month later, the digital aids actually produced a much higher word recognition score of 56.3%, putting me cleanly out of the CI criteria. I was delighted with my results but disappointed too. I genuinely didn't think I was hearing that good; while the Digitals enabled more environmental sounds, I was still missing out on some of the speech tones that my old Analogue Aids offered. With reassurance of an ongoing annual assessment, I would remain on the CI list in the event of any future changes in my statistics or the CI criteria. At every assessment I had to ask for the programme to be re-checked and adjusted, time and time again... I still wasn't satisfied.

Shortly after getting the Digital Aids, I started to develop a series of ear infections, slight skin irritations developed inside both ears that naturally affected my hearing big time. It was 9-10 months before they discovered I had an allergic reaction to the acrylic ear-moulds! Once the new hypo-allergic ear-moulds were in place the infections went away but my hearing had changed. Initially blaming a malfunctioning in my digital programme, I went back for my annual Assessment planning to request that the Digital Aids programmes be re-checked. To my amazement the hearing test showed my hearing had decreased to one level lower than 2005 test. My word recognition score had also dropped to 52%, putting me into borderline consideration with the new CI criteria that had been increased in recent years to 48%.

The audiologist decided to do individual ear word recognition test, and discovered that my left ear scored 21% while my right ear was 37% approx. These scores, along with the changes in my hearing test and work recognition, were enough to suggest putting my case back to the CI team for possible Implant consideration.

One month later I received a letter for an "Aural Rehabilitation Pre-Op Counselling" appointment with Catherine Percival (Speech Therapist) and Jaclyn Smith (Audiologist). The letter had me thinking positive that this was 'maybe' the starting point of the long path toward getting approval for a CI in late 2010 or 2011 even.

But nothing prepared me for the news that awaited me today: due to my position on the list I've been fast-tracked approved to have a CI on 18th November 2009 - 14 weeks from today in fact...

Wow!

I know there's a lot of work ahead of me, a lot of thinking and decisions to make. My emotions are all over the place; from fear to excitement, from confusion to delight, I am still in a daze... someone pinch me please! Yes, it's official: I’m getting a Cochlear Implant!