Thursday 20 September 2012

New sounds for the first time

It was a challenge to take the boys back to school at the start of term. The noise in the playground. Voices everywhere. Children chasing around. Scooters and bikes rattling. I guessed it would be like this, so wore my old hearing aid on my other ear for support.

It was lovely to see old friends again, some of whom I hadn't seen for the weeks over the summer holiday. I should have prepared some words on how I was getting on and what I was experiencing, but it was and continues to be really difficult to explain.

During noisy times, the best description of the sound I'm hearing is like a jangling set of keys on a key ring. But it's not always like this. The biggest change I've noticed is being able to pick up quieter sounds. Seriously quieter sounds.  And higher pitched sounds too.

Here are some examples of what I've heard recently for the first time in my life:

  • Birds twittering in the garden
  • Leaves rustling in the trees, and my t-shirt flapping during a run
  • Clock ticking (if I hold it close)
  • Exercise bike in the gym "pinging" at the end of a programme
  • Match flaring after being struck on a match box
  • Candle flickering when blown
  • Smoke alarm (no connection to the two above)
  • Rice Krispies snapping, crackling and popping
  • Rubbing sun cream on skin
  • Spraying perfumes
  • Buttering toast
  • Rubbing hands together
  • Dragging feet on the carpet
  • Breathing (after a run...)
  • Remote control buttons when pressed
  • Difference between S and SH
Quite amazing really, and nothing short of a miracle.  But there's still a long way to go.  After all, I can pick up these new sounds and sometimes distinguish them from other sounds, but I'm not yet always able to remember what they are.  As they warned me, it's going to take a lot of practise. It's a whole new language. I can only imagine this is what it's like for babies, learning the sounds of life for the first time.

Listening to voices remains incredibly hard. Even now, I still cannot tell the difference between Dan and the boys.  It's a real effort to make sure I find the time to sit down in the evenings and practise listening.  Dan will say aloud the months of the year, or days of the week, or family names or numbers.  He reads out news articles as well, or paragraphs from books. I close my eyes and try to work out what he's saying.  The more I do it, the easier it gets.  But it's slow progress. Every word needs to be re-learnt. No doubt I will rely upon lip reading for a while yet.

One small success though - if Dan stands at the other end of the house, in the conservatory, and talks normally, I can hear if he's asking whether I want a cup of tea or mug of coffee. That's quite neat.

My next appointment at Addenbrokes in Cambridge is today. This will be my third programming session, where they will again check and adjust the range and volume of frequencies handled by my implant.  It will be another long day, but certainly interesting to see if it makes any further improvements.  Fingers crossed.

Thursday 30 August 2012

Switch on - Day 0 (continued)

After a welcome and some introductions with the audiologist, I was handed my shiny new processor (the bit for the outside of my head) in Bordeaux Red and hooked up to her computer.  The switch on took about an hour, and unlike the name suggests, involved more than just a simple flick of a switch.


The implant cable which now sits inside my cochlea has 12 electrodes, which you can see if you look carefully at my x-ray image.  Each of these electrodes is responsible for a different set of sound frequencies, ranging from high to low tones.  The switch on process involves adjusting each electrode in turn, to produce a comfortable range of high and low volumes.

"Ouch!!!!" was my first reaction when I was connected to the computer.  I felt a loud, uncomfortable crash inside my head.  My instant reaction was to rip the processor off my head.  But I resisted, and the sound faded away.  The session continued like this for about 30 minutes, using the computer to throw different tones at different volumes at my implant - the quiet ones were fine, the louder ones brought tears to my eyes.

And then came the moment to listen to the real world... Click.  "Hello Catherine, can you hear me?  I've switched your implant on now.  Testing, testing, 123." I lip read her perfectly.  But what I heard was different.  It wasn't a voice at all.  It was just squawks and beeps and whistles.  It was same for every sound, voice or not.

Walking back to the car, I felt nothing but exhaustion. When we got home, there were so many sounds coming from everywhere and after an hour, I pulled the processor off, and wondered how it was going to work.  I'll be honest, I wasn't expecting it to be quite like this.

While not pleasant and consistently uncomfortable, this reaction is typical, so I'm assured.  My brain will take time to adapt.  But at the moment, it feels like there's an awful lot of adjustment to be made.  

Wednesday 29 August 2012

Switch on - Day 0

The switch on happened today, and went smoothly.  I'll write a brief summary of the day shortly and upload some photos, but need to gather my thoughts first.  Before then, and over the coming days, I'm going to list all the sounds I'm hearing for the first time.

X-ray of my head

Here's an X-ray of my head, following the operation to insert my implant.  You can see the implant fixed to my skull, and the 12 individual electrodes on the curled wire which sits inside my cochlea.  Click on the image to see a larger one.


Monday 27 August 2012

The "switch on" is tomorrow

Four weeks after the operation, the day of my "switch on" is almost here. On both Tuesday and Wednesday this week, I'll travel once again to the Emmeline centre at Addenbroke's in Cambridge, to receive a processor for my new implant, and then begin the process of getting it switched on and configured.

I'm desperately excited, but also nervous - in near equal parts. Over the past few months, I've tried to keep my expectations low. But it's difficult not to imagine a life with more hearing than I have now. Will it work for me? Will I be disappointed? Will the sounds I hear just be loud muffles, rather than the quiet ones I hear now? Volume is nothing, clarity is everything. And what about everyone else? My friends and family have been so supportive, I don't want to let them down.

It will be a shock at first. The auditory nerve on the right side of my head, which carries the electrical signals from the implant, won't know what's hit it. From carrying nothing more than a slowly decreasing, drought-laden trickle over the last 34 years, to a gushing deluge in an instant.

Of course, my brain won't recognise most of the signals immediately after the switch on. I've been told I'll hear robotic beeps and whistles to start with - whatever they really sound like. It will take time for my brain to piece together the new sensations with the sounds that are causing them. How quickly this happens, if at all, will depend upon how quickly my brain can adapt. They say it's usually as good as it will ever be after a year.

Whatever happens over the coming days, weeks and months, I know that commitment and dedication from me, and patience and support from friends and family will play a huge role. And from that point of view, I know I'm in the best possible place to make the most of this opportunity.

Monday 30 July 2012

Thank you everyone

I'd like to express a big thank you to all those who have written messages of encouragement, sent cards, delivered beautiful flowers, given gifts, cooked hot dinners and provided childcare over the past few days.

You've really helped me and are very much appreciated - thank you everyone, not least my wonderfully kind family, the Coopers and Kilkellys (Dan's sister's family).

Saturday 28 July 2012

Surgery day arrives: Thursday 26 July

Thursday morning followed a slow and restless night spent worrying, apart from the obvious, about not waking in time for an early breakfast before my fasting deadline. It was to be unfounded. I found myself soft-boiling an egg and toasting some soldiers at 5.30am. I needed to be “nil by mouth” from 6.30am, and didn't want to miss getting a good start to the day.


After dropping the boys off with their play buddies for the day, Dan and I made our way to Cambridge, with me in the driving seat. I needed the distraction.

It was a lovely morning for a drive, the sky filled with bright blue and hot sun. We opened the windows and listened to Kiss FM on the radio. Funnily enough, they played several songs I could remember from when my hearing was better. I felt happy, but wondered if these familiar sounds would be the same in the future.

The Spire Cambridge Lea welcomed us more like visitors to a hotel than a hospital. We were shown quickly to my room. A nurse introduced herself, asked some questions and then took my blood pressure and temperature. She suggested I change into the regulation gown and antithrombotic tights straight away, just in case I was first up. I let Dan take a photo, but only if didn’t end up on Facebook. A minute later, “looking good…” was trending under the photo on my profile.

A few minutes later, the anaesthetist entered the room and introduced himself. The surgeon arrived not long after. We were keen to find out what time I was going in. Unfortunately, there was a delay, with my slot now looking to be around late afternoon or early evening. My heart sank.

Dan started to look hungry. To be fair, it must have been a couple of hours for him... I encouraged him to have his lunch. He looked relieved, and said “I guess there’s no point in both of us being hungry?”. I smiled; my tummy groaned.

It was a long afternoon. I had a stash of magazines to read and the TV to watch, but they didn’t really help. There was a garden with a sitting area near my room, so I started to wonder if it was worth getting changed back into my clothes and going out there. No-way was I going out there in my gown. At just that instant, rather ironically some might say, the fire alarm sounded. Seriously?

I rather begrudgingly ended up in the garden. My gown wasn’t tied up properly at the back, and I felt quite exposed from the back. Literally, Dan indicated later. Just call me Bridget Jones. Fortunately, the alarm stopped after 5 minutes, and we went back to my room.

At around 6pm, my turn finally arrived. After one last toilet stop (yes, 8 hours after my last sip of water), I jumped back onto my bed, and was couriered down the corridor to the anaesthetic room. After all these weeks, the operation was here.

My hands grew clammy as the team checked my details, and one of them carefully inserted a cannula into my hand. The kindly anaesthetist said I looked terrified. How very observant. I suddenly felt a cold stream trickle its way up my arm. A nurse stroked my hand and said it was okay. I begged to differ, and decided to tell her it wasn’t working. But before I had the chance, I opened my eyes and found myself in a different room.

The throbbing behind my right ear told me it was over. As I came to, I could see a nurse’s lips moving, but not clearly enough to read them. My head felt heavy. I just wanted to see Dan.

Fifteen minutes later, they wheeled me back to my room, two hours since I’d left it. Dan was relieved to see me. He looked tired though. The nurse said I hadn’t needed stiches, or a bandage – just glue. Amazing, just glue.

I was ready for a cup of tea, or four. I got through two small tea pots, and then worked steadily through some brie and grape sandwiches, and other snacks. Having been warned about permanent changes in taste after the procedure, I wondered if they’d taste different. A bit metallic perhaps, but not too much. Disappointingly, chocolate still tasted moreish.

It was starting to get dark, and was time to settle down for the night. Dan stayed with me, having crafted a bed from two armchairs in the room. It was fine, he assured me. My pain was too much to disagree with him. I drifted in and out of sleep during the night, watching TV and reading in between. Nurses appeared at regular intervals to take my vitals, and supply me with codeine and paracetamol, which helped.

In the morning, I had breakfast and was allowed to leave at 10:30am. I felt tired and sore, slightly dizzy, but managed the walk to the car, and survived the surprisingly bumpy ride up the A11 back home. Every bounce jarred my head.

Our boys were waiting for us outside our house, holding welcome home pictures and balloons. My mother-in-law was cheerily waving with them, having looked after them overnight. They all looked so happy but were wary that I was in pain. The boys were keen to see my scar as soon as I stepped foot in the house. “Yuck” apparently, but not quite enough to stop them requesting repeat viewings several more times during the day.

It was wonderful to arrive home again, with the surgery behind me. Four weeks and counting to the implant “switch on” back at the Emmeline centre at Addenbrooke’s in Cambridge.

Monday 23 July 2012

Not long now...

Only a few days to go now, with my surgery planned for the afternoon of Thursday 26 July.  It will be performed at the Spire Cambridge Lea Hospital, and involve an overnight stay.  If everything goes to plan, I should be home on the Friday afternoon.  Here's hoping...

Tuesday 10 July 2012

My last pre-surgery appointment

I turned the key in the car ignition at 7:15am precisely, aiming to reach Addenbrooke’s in time for cup of tea before my 9.30am appointment. It was an early start, and made alone this time, but the morning sunshine spurred me on.

I’d barely sat down in the waiting room when my name was called, coinciding with the arrival of my BSL interpreter. The welcome was friendly and made me feel that the long drive was worth it.

My last visit to the Emmeline centre, confirming my suitability, was only a week ago. Today, I was here for two sessions, entitled "Device Information" and "Expectations and Outcomes".

As the name suggests, the first session was to explain how to use and operate the implant processor – the outside bit that I’ll eventually have magnetically stuck to the side of my head.

Unlike standard hearing aids (or at least all the ones I’ve had), the implant processor can use a rechargeable battery pack as well as conventional batteries. The rechargeable unit lasts for up to 12 hours. The conventional batteries last for between 3-4 days, which is similar to what you get with a standard hearing aid.

Fortunately, the centre supplies both (including a year’s supply of batteries) so I won’t have to choose between them, although the thought of finding space for yet another charger alongside the mobile phones, tooth brushes, ipods and laptops fills me with dread.

I hadn’t prepared for the next question. Perhaps the most important one of all. What colour processor would I like? Remembering my well-used colour chart from an earlier birthday present, my heart said Sparkly Glitter but my head said Purple.  I opted for Bordeaux Red.
As we continued the session, I expressed some concern about losing the processor or damaging it. Will I need additional insurance to cover it? Apparently not. I was told that the NHS will deal with this for me. Reassuring, and yet another reminder of the fantastic service they provide.

We moved on next to recommended safety guidelines, and read through a leaflet which outlined a disturbingly long list of dos and don’ts. Most of them are common sense, some not quite so. For instance, I shall no longer be able to go on “extreme” rides, rub a balloon on my hair, walk through an airport metal detector, touch an electric fence, use a Van-der-Graaf generator, or touch the screen on an old CRT TV.

As I’d already found out, MRI and Nuclear Magnetic Resonance (NMR) scanners pose a huge risk. If I ever do need a scan, a clinician from the centre will need to supervise it. In some cases, I might need surgery in advance to remove the implant altogether. All rather daunting, I’ll move on quickly.

After the operation, I’ll be provided with an ID card confirming my membership to the Cochlear Implant group – or rather to provide guidance for airport security, and those that may need to treat me in an emergency. They also strongly recommend I wear a Medic Alert bracelet with the message “Cochlear Implant User – Do Not Use MRI Scan”. Moving on again.

The second session was an opportunity to discuss my expectations of having a Cochlear Implant fitted. Being profoundly deaf from birth, the level of hearing improvement for me is likely to be far lower than someone who was recently deafened. This is carefully and gently conveyed to me again, as it has been throughout all my visits here.

I appreciate this, but I’m willing to go through the process, even if it improves my hearing by the slightest amount.  It’s not going to make me hearing, but it might make me hear more. And any improvement won’t occur immediately, but rather over a year or more. So I think I’m prepared for the worst, but desperately hoping for the best.

This last session eventually ended, and so I made my way home again, keen to relay all the information to my family. And perhaps, to check that Bordeaux Red will match my summer wardrobe.

Thursday 5 July 2012

My hearing test audiogram

Here are the results of my latest pre-implant hearing test, taken a few weeks ago.  Normal hearing senses sounds between 0-20 decibels (dB) at the top of chart.  Profound hearing loss is towards the bottom. Every increase of 10dB sounds twice as loud. A pneumatic drill is normally around 120dB, and usually causes pain.



Tuesday 3 July 2012

To be, or not to be?

My first assessment at Addenbrooke’s was almost three weeks ago, but it seemed less than that, as we sat in the visitor room waiting for my results. After five minutes, one of the team came up to where Dan and I were sitting. This is it, I thought. “We’ve got a bit of a delay, the consultant has been called away to an emergency” she said.

After another half an hour, a familiar-looking nurse strode up and enquired “Catherine Cooper? Come this way, please”. At last, this really was it. She led us to her room, and then went back out again to get my notes.

We sat alone in the room, and Dan scrambled about to get his camera to take a shot, supposedly for posterity, but more likely for this blog, before she returned. As I sat there, I said to him, “I don’t think I’m getting it”. Surely if they were going to offer one to me, they’d have made me wait for the consultant? My heart sank.

The nurse came back, sat down, opened her file, and abruptly said “Yes, the team met this morning and would like to offer you an implant”. Silence. “Pardon?” I said, questioning what my eyes had just read from her lips. “They would like to offer you an implant” she repeated, giving a thumbs up this time.

Dan laughed, and jumped up to give me a hug. I was stunned. I didn’t quite know how to react. I was expecting the worst, and hadn’t prepared for this. Part of me thought “Wow, this is unbelievable.” But at the same time, I felt a bit disappointed. Why hadn’t I researched this years ago? Had I struggled for nothing? Why wasn’t I offered this before?

The nurse and Dan sat staring at me, waiting for a reaction. “Great” I garbled, still in shock. The nurse said I could go away and think about it, or decide now and fill in some forms. I nodded gently, understating a decision that might turn out to be the most significant one in my life.

We filled out the forms together, and I signed a disclaimer. I was then handed a letter for my doctor, requesting a pneumococcal vaccination, to reduce the risk of meningitis after the operation. Just the usual sort of thing. And then a further appointment was arranged for next week, to talk more about the operation and my expectations. “Keep them low”, I keep telling myself.

As Dan drove us home from Cambridge, my head cleared and excitement set in. I started to text my family and friends with the news, and received a steady trickle of congratulations and encouragement. I looked out of the window and gazed at the passing scenery, knowing this journey would become very familiar in the years ahead.

Sunday 24 June 2012

I've been invited back to the clinic.....

I've finally got my appointment with the consultant. It will be on Tuesday 3rd July at 3:15 pm. We'll discuss the results of my assessment. Is this when I'll find out whether I'm suitable for a Cochlear Implant or not? I'm a bit nervous!

Thursday 21 June 2012

It's a no-brainer, right?

Over the last few days, I’ve had time to sit down and do some research. My main aim was to find out what the risks and disadvantages of having a Cochlear Implant might be. There is an overwhelming amount of information out there, some biased, some balanced. The difficulty is identifying which is which.

Here's some of what I've found so far:

  • Not everyone is a good candidate for a Cochlear Implant - I'm still waiting to find out...
  • Implant procedure is invasive and could destroy any existing "conventional" hearing (i.e. picked up by my ear drum, small bones and cochlear) on the side they operate on - only a problem if the operation doesn't work? - this is because the insertion of the implant into the cochlear can damage the few remaining hair cells that actually work
  • Risk of serious infection to the surface lining of the brain and meningitis - they vaccinate against meningitis to reduce the risk
  • Risk of fluid leakage from the brain or cochlear into the area created for the implant
  • Risk of implant rejection, if the body rejects the implant
  • Risk of increased tinnitus - I get this already...
  • Risk of dizziness and vertigo
  • Risk of permanent paralysis to the facial nerve - I don't like the sound of this one
  • Risk of changes in taste sensation - could be useful for chocolate and wine
  • Risk of Cochlear Implant manufacturer going bust - means no support, or software upgrades, surely not very likely in the current climate...??
  • Pain and numbness around the ear for a few days or weeks - I expected this
  • Must avoid contact sports forever, to reduce risk of damaging implant, more surgery would be needed if it was dislodged or damaged - I'm not really one for them anyway
  • Must avoid CAT / MRI scans forever and anything with a strong magnetic field, like metal detectors - what happens if I need a scan in the future?
  • You only get one Cochlear Implant due to limited funding, although children can get two - one is better than none though?
  • Cost and hassle - leading up to, and after the operation, weekly visits to Cambridge, arranging childcare, disruption to my family, rehabilitation over a year, not to mention the non-stop effort of learning all the new sounds I've never heard before - not sure this last one is a disadvantage...
So... suddenly the no-brainer doesn't seem quite so straight-forward. Perhaps my hearing isn't so bad after all?

Tuesday 19 June 2012

No news yet but.....

On Embarrassing Bodies, Channel 4 tonight, there's a piece about Cochlear Implants. A woman called Suzanne, who I don't know, had one fitted recently. I'm not sure what they'll show, but it should be interesting one way or another.

It'll be on at 8:00 pm. I am hoping for the boys to be in bed, fast asleep! I hope you can watch it too, and I'll be keen to hear your views. Please post the comments on my blog.

The big question is, will this put me off having a Cochlear Implant if it doesn't work for Suzanne?

Monday 18 June 2012

My thoughts for the day

It’s only today that I am starting to think, yes, this could be it. I’m beginning to feel excited about the idea of having a Cochlear Implant. The question now is not whether I should go for it, but more of, am I suitable to have one? I’m starting to panic a little, and hope that I can have one.

I must be patient and wait for the letter to arrive in the post. Will it arrive this week?

In the meantime, whilst waiting, I should probably read more about the disadvantages of having an implant. There are risks, after all.

Saturday 16 June 2012

The day after

My assessment day arrived before I knew it, and I felt as though I hadn’t really thought about things properly before I’d got there. It was reassuring to have Dan with me. I know he’s very excited but he doesn’t put any pressure on me, and reminds me that I don’t have to make a decision straight away.

I can just remember sitting down in the waiting room for my first appointment. The posters and photographs on the wall reminded me of my childhood, when I used to have hearing assessments and speech therapy sessions as a slightly confused little girl.

I appreciated having a pre-booked BSL interpreter. It made me feel relaxed. When she arrived, I wanted to sign away and have a nice conversation with her, but she was there to do her job and I was there to do the tests.

There were two particular tests I had to do that I found difficult.

The first test was my hearing test. I’m not so keen on the hearing tests because they don’t work with my tinnitus. Most deaf people get tinnitus, and it tends to get worse when not wearing hearing aids. For the hearing test, I had to take mine out. After been given a set of head phones, I had to press a button every time a beep came on. It is difficult enough being deaf, but even worse with my tinnitus playing tricks on me. But I did the best I could.

The other test I did, I had to sit and listen to five different sentences which came from a loud speaker. I got a little bit upset at this point. I thought to myself, I really can’t hear what is being said. I did manage “The” once but nothing else. I used to be able to hear better than this, surely. Without stating the obvious, it did bring home to me that I’m well and truly deaf. Dan told me not to worry but I couldn’t help feeling sad. But he was right. I am here after all, to see if they can improve my hearing.

Friday 15 June 2012

My first Cochlear Implant assessment

Dan dropped the boys off early at breakfast club, and then we drove the 2 hours to Addenbrooke's Hospital in Cambridge for my first assessment. We arrived just in time for the first 10am appointment, followed shortly after by a BSL interpretor, who I'd booked in advance - lovely as I knew I'd be able to relax and not have to rely upon lip reading the whole time.

And so began a long series of tests and questions, as well as a handful of answers along the way. The objective of the day was clear - to check my suitability for a Cochlear Implant, perhaps ending with the eventual offer of surgery and rehabilitation over the next few years.

First, I had a standard hearing test (headphones on ears without hearing aids) and then a bone conduction hearing test (against my head). Then I had a speech comprehension test, listening to five spoken phrases and trying to pick out what was being said. I could only manage to pick out a single word, "The". The results were poorer than those recorded at my recent visit to the advanced hearing clinic.

And then we moved into another room to discuss Cochlear Implants in more depth. The benefits, the technology, the risks, the expectations, the reality, suitability and so forth. I was gently reminded again that not everyone is suitable, and even those that are experience different levels of change. It's not a cure for deafness, but in some cases, not all, a Cochlear Implant has the potential to make a remarkable difference. Could it really help me?

During the meeting, the audiologist talked about the new sounds I might be able to hear - birds singing (now that would be amazing), gentle rain drops, flies buzzing, the letters S or Z as well as a whole wide range of sounds that many hearing people take for granted - perhaps even voices without lip reading.

But again, my expectations were very carefully managed. Everyone is different, and will have a different experience. The research indicates that adults who have been hearing and then gone deaf, tend to have a better hearing ability (they call it "outcome") compared to those who have always been profoundly deaf, like me.

After this discussion, I was asked to read out some text and describe some pictures while being filmed. The quality of my speech and use of language is apparently one factor in deciding suitability.

At around half 12, Dan and I had a rather quick lunch break and then went to see a nurse to weigh me, check my blood pressure and get a full run-down on my personal and family medical history. This was a surprisingly quick session lasting just a few minutes.

The next appointment was an auditory processing test to check the health of my auditory nerves - essential for a Cochlear Implant. I had 3 electrodes stuck to my head, and then had to lay down on a bed for 20 minutes. During this time, my auditory nerves were stimulated with electrical impulses (it sounded like a hissing), with my brain activity recorded.

The final test of the day was a CAT scan, partly used to gather information about the shape of my cochlears, which could determine the choice of implant, if we get that far.

And so the day was complete, all tests done. From here, the team will review their findings and decide whether or not to offer me a Cochlear Implant, probably within a few weeks.  The waiting game begins...

So what exactly is a Cochlear Implant?



In a "hearing" ear, sound causes the ear drum to vibrate, which in turn vibrates the tiny bones in the middle ear. These vibrations move the fluid within the cochlear in the inner ear, and the flow moves against receptors (hairs) which fire electrical impulses up the auditory nerve to the brain. The sense of hearing is created by the brain's interpretation of these impulses.

Unlike a conventional hearing aid, a Cochlear Implant bypasses the eardrum, middle ear bones and cochlear hairs.  Instead, and from within the cochlear itself, the implant produces the electrical impulses required by the auditory nerve.

According to Wikipedia:

"A cochlear implant (CI) is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing.
Cochlear Implants may help provide hearing in patients that are deaf due to damage to sensory hair cells in their cochlea. In those patients, they can often enable sufficient hearing to allow better understanding of speech. The quality of sound is different from natural hearing, with less sound information being received and processed by the brain. However, many patients are able to hear and understand speech and environmental sounds. Newer devices and processing strategies allow recipients to hear better in noise, enjoy music, and even use their implant processors while swimming."

Tuesday 8 May 2012

Back to the advanced hearing clinic

I had my new digital hearing aids fitted and switched on during an appointment with the audiology team at 8:30 am this morning. What do I think? I don't like them! As I've always found with digital ones, they're loud and echoey. The lady's voice sounded robotic. Although I could hear her breathe as if she was right next to me. That must be good? I've been told to give them time, and not to put my old hearing aids back on. I must give them a go.

The next question was, have I thought more about a Cochlear Implant? I said I had thought about it but was still not sure. Why? It's a very big decision to make. I am worried it will change me as a person. What happens if it doesn't work? I am worried about covering childcare during all the appointments as well. It will be a lot of hassle?

Nonetheless, I agreed to go for an initial assessment at Addenbrooke's Hospital in Cambridge. I don't have to make a decision right away. I still have time to say No. My mind is spinning with questions. An appointment will arrive in the post.

Saturday 14 April 2012

Advanced hearing clinic

I've just returned from a hearing test with the audiology team at the Norfolk & Norwich Hospital.  As suspected, the hearing in both of my ears has decreased since my check-up last year but they say there is a new and more powerful digital hearing aid now available, which may work better for me.  I need to go back to the hospital in two weeks time to get them fitted.

They also asked me whether I have thought about having a Cochlear Implant.  I haven't really, as I'd never thought I was suitable.  A lot of thoughts are going on inside my head and I am thinking, "Wow, really?".

I am to let the team know whether I would like them to refer me to Addenbrooke's Hospital in Cambridge when I go back in a couple of weeks.  I don't know what to do.

Thursday 12 April 2012

A brief history of me

Hello, I'm Catherine. I was born profoundly deaf although it wasn't picked up until I was 6 months old. I wore phonic ears as a toddler, eventually moving onto hearing aids. I was brought up to communicate orally, relying upon speech and lip-reading, rather than sign language. I can vividly remember the numerous and often frustrating speech therapy sessions I attended as a child.

I was born in England in 1978, but moved soon after to Germany. My mother and father had trained as teachers, and decided to take up teaching posts in Hanover. There were several RAF and Army bases in Germany, all with schools for the children whose parents worked in the British Forces. I loved Hanover and can remember it clearly.

At 6 years old, we moved to Berlin. A new teaching post. The Berlin wall was still up, and we were very privileged to be able to visit East Berlin several times and each time, had to go through the famous Charlie Check Point. The Soviets were very serious and we were not allowed to communicate with them, other than pressing our passports flat against the car windows. I was pretty scared but amazed at how different life was on the other side. They seemed very poor.

At 8 years old, I was sent to boarding school in England. It was the Mill Hall School for the Deaf in Cuckfield. My mother and father felt I was falling behind and not coping very well in a main stream school. It must have been a difficult choice for them, but on finding out, I can remember feeling ghastly and crying continuously.

Mill Hall School opened new doors for me and from the nervous and isolated child, I opened up and the penny dropped. I had so much catching up to do and worked immensely hard.

However, I was terribly homesick as I had to live with foster parents and couldn't go home to Germany until the school term ended. The first term was eight weeks long. I spent many nights just crying, and writing letters home saying "Can you see my tears?" which had dripped onto the paper. I can feel my eyes welling up now as I write this!

Mill Hall was an oral school, but I learnt sign language through my friends. It gave me an extra and much needed level of confidence.

At age 11, I sat an entrance exam to get into the Mary Hare Grammar School for the Deaf in Newbury, Berkshire. I passed, and was thrilled to pieces. Mary Hare gave me the best time of my childhood. I am still in contact with several of my friends, and have kept a special bond with many of them. It was a boarding school, but lots of my friends went home at weekends. Still being based in Germany, I would often stay with my friends' families at weekends. It's fair to say that the person I am today is through those formative years spent with my friends and their families.

When I was 18, I had to leave the safe and protective bubble of Mary Hare and return to the "hearing" world again - a daunting prospect. I went back to Gutersloh, in Germany, and spent a year there. Mainly to get used to being with hearing people again, but also to spend time with my mother and father. To begin with, it was awful. I was so far away from my friends and missed them greatly. I hated being in Germany and it was a difficult challenge to live with parents after so long apart, particularly now as an adult and not a child. I felt very isolated and jealous of my friends who were still together back in England. However, we all did so much letter writing and I met up with my friends over Christmas, Easter and a summer in Cornwall. I started going running, and would run for miles! It kept me going but it was a very long year.

Now 19 years old, I embarked on a degree at the University of Plymouth. With the confidence I gained from taking a year in Germany, I had a fantastic time. The first year in particular. But I struggled with understanding the lecturers, even with a full-time note-taker sitting beside me. I got through it and after four years, including one gap year in Ipswich, passed with a degree.

It was during the gap year in 1999/2000 that I met my now husband Dan, who happened to have a summer placement at the same company I was working at. We married in 2002, and had two lovely sons - Elliott and Joshua, both hearing. My life was complete.

This all changed when my father-in-law died at the beginning of September 2011, aged 67. It was an absolute shock and utterly devastating. I was immensely fond of Terence and had always felt a special connection with him. His own father had gone deaf in early adulthood, but was strong minded and didn't use hearing aids or other equipment to help him and those around him - in part, perhaps fearful of society, which must have been very different then.

Having not been able to help his own father, I think Terence was pleased to have the opportunity to help me. He was always interested and always made sure I knew what was going on at family gatherings, sometimes including 16 of us, or days out. I am so grateful that we can talk about Terence to this day, and remember the good times. But it doesn't help that I miss him. We all do.

Perhaps coincidentally, it was around this time that I noticed that my hearing loss, already profound and worsening each year, had degraded even more. Discretely, I started to lose my confidence again. The signs were there - feeling uncomfortable in group situations, declining invitations to social gatherings and avoiding chatting to groups of mothers at the boys' schools.

In May 2012, I decided to book a hearing test with the audiology team at my local hospital. It was a standard process that I'd been through many times - the usual hearing tests, and then an increased amplification re-programme for my hearing aids, all done within a couple of hours.

The outcome from this particular meeting though, was anything but what I was expecting...