My final post? 7 months on

So, I am thinking this might be my last ever post on this blog.

I have reached the point where there is not really much new stuff to report.

I know it has only been 7 months since I got the implant (7 months! is that all???! Can you believe it?) But already, I think I have reached the peak, and plateaued. The implant will not get any better or different now in my right ear. It has reached its’ ‘zenith’.

And what a zenith that is.

I can hear on the phone now. Very well.

It's goodbye TTY, hello normal phone since I had the implant. However, I keep the TTY on my desk just in case! Can't shake the feeling of needing it there.

So well in fact, that I have had a normal phone installed on my desk at work alongside my trusty TTY phone that I always used when totally deaf.

So, as you can see – the cochlear implant actually did what I dreamt it would do – it allowed me to reconnect with the world on the phone again.

I can also hear a lot better in group conversations and meetings. Where I used to strain to hear someone at the other end of a meeting table, now I can sit back and hear almost every word. That never ceases to amaze me.

The things I still can’t do all that well are:

• hearing lyrics to music (I can hear them better than I could with the hearing aids, but they are still a bit unclear at times)
• watching movies and TV – I still need captions if I am going to really relax and enjoy movies and TV – however, I have been to see Avatar and
  

  I still need to watch TV with captions. Which is why it's so frustrating when they don't have them!

  District 9 without captions, and understood most of it. I can also understand most TV news without captions.

• I still tend to lip-read in noisy environments, but I can hear people a lot better in noise.

So, if I am going to leave anyone with a word of advice, or perhaps a message to the deaf community, or maybe parents considering an implant – having been through this all before, having met so many people who’ve had implants, having talked to ENT surgeons, doctors, audiologists and researched online – it would be this:

Kate’s Final View on Cochlear Implants

Disclaimer, this is only my view, no one elses. You might think it’s completely wrong, yo! If you do, then leave a comment, but make sure its a clever, well-thought out comment. I’ll delete stoopid ones!

• A cochlear implant is not a cure for deafness. It is just like a hearing aid, except it is implanted in your head.
• It does work wonders for some people, and not so well for others, just like hearing aids. To find out whether you are a good candidate, you need to see your cochlear implant specialist. A normal audiologist just won’t cut it – they just don’t know the real facts and figures.
• It appears that people who go deaf later in life are probably going to benefit most. I was one of those, losing hearing over ages 11-19 years.
• It appears that people who are deaf since birth, and get the implant after 5 years old seem to find it harder to adjust – maybe because of crucial years of language development have passed? Not sure.
• From what I have seen, deaf people who get an implant before the age of 5 years old seem to find their cochlear implant more useful.
• Even with an implant, you will always be deaf, and something like 20 per cent of the time you will not be using it (i.e. swimming, shower, in bed, when playing messy sports), so it pays to learn sign language and lip-reading to use with your family and friends.

I am glad I got the implant. I am also glad I waited because it was an emotional ride. But I would do it all again, definitely. If I had a deaf child tomorrow, I would give it a cochlear implant before the age of 4, teach it sign language and show it how to lip-read.

There, getting off my soap-box now.

Here are my final test results for the 6 month test at the Sydney Cochlear Implant Centre – please note the disclaimer my audi asked that I include on my hearing aid result!

These are the test results for my Phonak hearing aid in my right ear: Note: These hearing aids use “Input Compression” or “AGCI” (Automatic Gain Control for inputs). This feature means that the hearing aids vary the amount of amplification according to the loudness of incoming sounds. Soft sounds are amplified more, while loud sounds are amplified less. The complexityof the aids means that they amplify warble sounds used in aided threshold testing differently to running spech. For this reason, aided thresholds measuired with a non-linear aid can only give a general impression about what is audible for complex sounds such as running speech.

This is the test result for my Freedom Cochlear Implant, in my left ear.

My final speech recognition tests were:

Sentences

• 100 per cent for both hearing aid and cochlear implant together
• 100 per cent for just the cochlear implant
• 66 per cent for just my old hearing aid

Words

• 84 per cent for just the cochlear implant (I was zero per cent when I used my hearing aid)
• 20 per cent for just my hearing aid

So, I as you can imagine, I am contemplating getting a second cochlear implant.

But I am going to hold off for a few years, only because the hearing aid balances out the sound of the cochlear implant, and makes everything sound ‘normal’.

So I guess you could say ‘watch this space’ – I may come back with a new blog:

“Kate’s Second And Hopefully Final Cochlear Implant”!

Who knows!

Until then, bye, and thanks for reading!

Kate Locke, signing off! That's it from me - have a great 2010!

 

I won a Human Rights award

Do I look a little nervous? Perhaps! Not every day you have to stand up in front of 400 people to talk for 3 minutes.

Can you imagine my face when they told me I had won? I was in shock.

It was the Australian Human Rights Community Award for an Individual.

It’s a big thing for me, because when you do the sort of stuff I am doing, it’s very lonely work – you think no one notices it. You do it, not for recognition, just for trying to change things for the better.

Plus, I’ve barely won ANYTHING in my life. So this is mega epic for me.

You can actually hear the acceptance speech at the awards ceremony which was held at the Sheraton on Park in Sydney on 10 December 2009.

For all my deaf friends, I have asked them to please put up a transcript for hearing impaired people! And lo and behold, mine is the ONLY one that comes with a transcript. HAHA.

Click on the link below to hear the audio of Human Rights awards speech:

• Read the transcript of Kate Locke’s Human Rights Awards speech
• Hear the audio

 

Listening to TV on plane flight with cochlear implant

Ben and I flew to Perth last month to attend the Hear For You mentoring program for deaf kids in Western Australia.

It’s a 5 hour flight from Sydney to Perth - I normally hate flying long flights because I can’t hear the announcements (freak out when pilot says anything, think we’re going to crash); can’t watch TV (no captions); can’t listen to the radio (I’m deaf remember); can’t read a newspaper (too big for economy!); and get bored of my book after 3 hours of reading.

So had readied myself for torture.

I am a nervous flyer. All the captain has to do is murmur "It's a beautiful day outside, and we're 20 minutes from Sydney." and because I can never quite hear clearly what the announcements say, I'll freak out, thinking "What did he say?? Did he say we are going to crash??!! Oh my god, we're all going to die!" And then wonder why everyone else starts reading the newspaper and ordering beer. Delightful.

We were flying Virgin Blue which is budget, so you have to pay to watch TV if you want it. After we settled in, and took off, they made an announcement that the credit card payment machines attached to the back of the headrests were broken, so they were going to give everyone free TV for the whole flight.

Everyone whooped and cheered, except me, because I thought I wasn’t going to be able to hear anything, so would be left out yet again.

But then I thought, geez, if it’s 5 hours of free TV and movies, I’m going to have a go. I’ll just watch the pictures if I have to – that will be better than just being bored out of my mind.

I held up the headphones to my hearing aid and cochlear implant and tried to follow the TV – I could hear it, but it was so static-ey and unclear, it was really disappointing. On a whim, I decided to try the ‘t-switch’ on both hearing aid and cochlear implant, which shuts out all the background noise, and only picks up the radio signals coming from TV. You have to have special headphones for that, so I didn’t think the Virgin ones would work.

But surprise! They had an operational telecoil built in! No notification anywhere, those stupid dolts. It turned out even Virgin Blue themselves didn’t know their flipping ear phones were built in with telecoil adaptability. Pathetic.

Holding the ear bud up to my ear, suddenly I could hear the audio quite clearly! I turned to Ben going “I can hear it! I can hear it!”

Wrapping my scraf around my head I managed to get the ear bud close enough to the cochlear implant microphone to be able to hear the audio for the TV/movies on the Virgin Blue flight. I sat like this for 5 hours from Perth to Sydney.

Small obstacle was the fact that the headphones provided were ear-bud types. Now that is difficult for cochlear implantees, since the microphone for picking up sound is behind your ear, not in it!

Ben said: “Why don’t you try sticking it to your microphone?” and I’m like “With what??”

In the end we wrapped a scarf around my head, and I sat like that for the whole 5 hours, and was able to watch TV and hear it perfectly.

 

Senate inquiry into hearing health launched in Australia

This is an important shout-out to all my Australian readers with a hearing loss.

The Australian Federal Government has launched a full Senate Inquiry into deafness!

Is there anything about having a hearing loss or being deaf that frustrates you?

• Have you ever felt annoyed at the cost of buying – and maintaining – hearing aids and cochlear implants?
• Have you ever been upset by the low standard of services of an audiologist?
• Ever wished you could stay with Australian Hearing after you were 21 years old?

The Australian Federal Government want to hear from EVERYONE in Australia about what issues they face when they have to deal with a hearing loss.

They are planning on using your input to change the way hearing health is dealt with in Australia.

It is so important that you email them to let them know what it is like for YOU personally.

All you have to do is send a short email to community.affairs.sen@aph.gov.au by 9 October 2009, letting them know what frustrates you most about your hearing loss in Australia, and what you would like to change.

I have done one already. If you need help in knowing what to write, have a look here.

http://katelocke.wordpress.com/2009/10/01/submission-australian-senate-inquiry-hearing-health/

This is your chance to finally let your Government know how difficult it can be living with a hearing loss in a hearing world.

Don’t miss this chance.

 

My submission to the Australian Senate Inquiry into Hearing Health

30 September 2009

Re: Inquiry into Hearing Health in Australia

To the Community Affairs References Committee (community.affairs.sen@aph.gov.au):

I would like to make a submission to the Hearing Health Inquiry.

I am a deaf young professional living and working in Australia.

The current Australian hearing health system is antiquated and not working well at all – it makes being deaf in Australia very difficult and expensive.

For example:

• my hearing loss was first discovered at age 11, and I was given hearing aids without any sort of rehabilitation or support. it took me ages to get used to them and to wear them. It was a traumatising experience as a child. I didnt wear the ones I was given at 13 until I was 18, because I hadnt been given adequate support in understanding how to use them
• When I did start wearing them, I received free hearing aids and batteries through Australian Hearing which was fantastic, and really helped.
• then suddenly at the age of 21, just when I was unemployed and studying full time at university, I was told I could no longer get any services through Australian Hearing
• I had to find a private audiologist, and many that I had didnt understand my hearing loss well enough, and I bought hearing aids from each of them, when one would have been enough. Each hearing aid is about $3,500 to $4,000. I was also convinced to buy expensive additional gadgets  for up to $1,500, which I have never used, because it was not correct for my hearing loss.
• One of my hearing aids broke and I had to buy a new one, as it was not covered under private health insurance
• I had to get a personal loan to pay for it, and then I had to go on Centrelink payments as well, because I had trouble paying my rent.
• I have just received my first cochlear implant. I had to take out private health insurance in order to get this over 3 years at $90 per month. None of my hearing friends pay anywhere near this amount for private health insurance.
• I had to take out special cochlear implant insurance at $300 per year to cover my cochlear implant, when someone who has an ipod can get that covered with their home and contents insurance. I have tried to get my cochlear implant covered under home and contents, and all the big insurers refuse to cover them.
• I’ve had to buy a special TTY phone and special Telstra HipTop mobile phone in order to communicate with people, as these are the only two I can use being a deaf person.
• Audiologists charge huge amounts for ear moulds when you don’t need them (up to $250), and for repairs (up to $500), and for batteries (they cost me $300 a year).
• I have been to see the Minister for Ageing about these issues, but as hearing health is under Ageing, it’s not the main part of the portfolio. Hearing health gets lost in Ageing. It needs to be put over into Health.
• Hearing health is not an ageing issue, I am only 29 years old, it is a health issue. Many of my deaf friends are under 30 years old.

There is an essential inequity as to how hearing health is perceived as compared to other health issues, even though hearing loss is one of the most prevalent health issues in Australia.

According to the Access Economics Report, one in six Australians has some form of hearing impairment, and this is projected to increase to one in four by 2050 (from Access Economics (2006) Listen Hear – The Economic Impact and Cost of hearing loss in Australia).

I would like to see the following changes made to the way hearing health is dealt with in Australia:

1. Hearing health should be moved out from under the Federal government Ageing portfolio, and placed under the Federal Government Health portfolio, alongside eye health. It currently does not receive the attention it deserves under the Ageing portfolio.
2. Subsidised government services should be offered via ‘Australian Hearing’ to people between the ages of 21 and 65 if they are on a low income, unemployed, full time students, or part time students. In Australia there is currently no help for these people in affording hearing aids, implants and other hearing health services.
3. Insurance companies should cover hearing aids and cochlear implants if they are lost or broken. Currently most insurers will cover silly things like iPods, but not a cochlear implant processor, which is $8,000 to replace, and vital for many to be able to hear.
4. Former child clients of Australian Hearing who are not unemployed, students, or on low incomes should not be suddenly cut off from services of Australian Hearing. They should be able to pay for services to stay on at Australian Hearing with their audiologist.
5. All hearing aids, cochlear implants and other hearing health aides should be able to be claimed as a tax deduction once someone starts work. Currently you can’t claim expensive hearing aids as a tax deduction.

Thanks for accepting my submission.

Sincerely,

Kate Locke

 

Two days back into ‘normal life’

Me (mostly recovered!) and my nieces, Nina and Amandine, at Neutral Bay Wharf in Sydney.

I am back to some semblance of normal life, being able to go back to work, and wash my hair. (Although am still without any sound in my right ear. Only 6 days until switch on.)

But having everything ‘go back to normal’ has had the interesting affect of making me much more aware of the changes to my head and ear.

My ear feels tender to touch now - whereas before it didn’t at all!

I get popping in my inner ear every time I swallow.

And I can REALLY feel the lump under my skin where the implant sits now – and I have to say that it is one thing that freaks me out. Sometimes I just walk down the street, with my hearing aid turned off, in total silence, feeling this lump under my skin on my skull, and wondering what it will sound like, what it is doing under there.

I mean, geez. I have a computer in my head! It’s going to take some getting used to.

One other thing that happened too, today – I was ‘testing’ how much I could hear in the implanted ear (basically nothing, until I get switched-on), but I got Ben to sing against my ear, and all of a sudden, I could hear his voice, though I couldn’t make out what he was saying – I could tell the pitch he was singing in, and the rhythm.

I got all excited, thinking that maybe the sound waves were making the electrodes move, and therefore maybe I would be able to hear without powering up the microchip – perhpas sound could be powerful enough to make the electrodes act like normal hair cells?

A dedicated boyfriend: thank you to Ben for yodelling into my ear when I wanted to 'test'.

But then we realised that as soon as he moved away from my ear, i.e. let go of me, and moved his lips away from touching my ear, it was like the sound stopped. I couldn’t hear it anymore. Even though he was still yodelling away like a mad man. (*sigh* what boyfriends will do huh?)

In fact, I was feeling the sound through my body, via vibrations!

Before I got the implant, I couldn’t understand speech much at all in that ear, though I could hear noise – but I didn’t realise because I used to test it by saying “Ben, talk into my ear loudly”, and then I could make out what he was saying (usually stuff that made me blush). However, it turned out I was actually ‘lip-reading’ by the feel of Ben’s lips making the sounds against my ear – because once he moved away – again, it was like suddenly it became muffled.

But now I can’t even lip-read through my ear, but my body picks up the vibrations, and makes me think I am hearing sounds.

Weird I know. The human body is an amazing thing.

The bionic ear will have to contend with Super Ear!! who will win??

The other weird thing is that since getting the implant, the left ‘hearing-aided’ ear has gotten bizarrely super-sensitive. So I am hearing things out of it that I had never heard before. Like bumps and things coming from the apartment above us. Apparently they happen all the time, but I have only just started noticing it!

And my breathing! It sounds SO LOUD.

So, I don’t know, maybe my ‘bad ear’ was holding back the ‘good’ ear, and now it’s finally free, realised its destiny and become SuperEar.

But all this will probably change after the switch-on. 6 days to go.

 

How long until I hear again?

People have been asking me how long it is until I hear again; whether I will actually have to wear something external to ‘hear’, or if its all internal; and if it will be like completely normal sound.

Well, in answer to those questions – the implant will be activated in 14 days, so in the implanted ear, I currently hear absolutely nothing. But I am doing okay on my other ear that still has the hearing aid, I am hearing about 20 per cent of words that people are saying, but understanding about 80 per cent of sentences. (When I want to. If Ben is annoying me, I can understand 5 to 7 per cent of what he says. Isn’t the brain an interesting thing?)

Here is a scanning electron micrograph of a normal hair cell region (called the organ of Corti)

It is quite freaky, because with my implanted ear, I used to be able to hear some very loud noises such as trucks and buses, or someone clapping or shouting right next to my head, unaided. But now, the insertion of the electrodes into my cochlea has destroyed all the remaining hair cells that would have detected those sounds for me. And now it is like my head is like wood.

Check out this incredible picture of cochlea hair cells. I am not sure whether these are animal hair cells or human - if you want to read more, check out this great article:  ‘Hair Cell Regeneration as a Therapy for Deafness‘ by Shelley Batts, a Neuroscience PhD candidate at the University of Michigan.

Of course hair cell regeneration is a good couple of decades away, so not an option for me.

Second query – I will definitely have to wear something externally in order to be able to hear. A cochlear implant comes in two parts – an internal, and an external part. So, yup, I will have to wear a magnet and wires on my head if I want to be able to hear out of that ear – hence all the robot jokes people keeping making … See what an implant looks like here.

And finally, the million dollar question… will I be able to hear like a normal person?

Well, the short answer is no.

Imagine your inner ear – it has thousands of tiny hair cells, the things that send the sound to the nerves of your ear. Each hair cell stimulates a part of the nerve, giving you a different sound.

The cochlear implant seeks to ‘replace’ those hair cells – and it only has the equivalent of 22 hair cells – or rather 22 electrodes that stimulate your nerves via the computer in your head. (robot! robot! robot! ok that’s enough)

Also – the human cochea is so tiny, that when the cochlear implant is inserted, it can’t reach all the way into it – it only reaches into the section of the ear where the high pitched nerves are…

My face at switch-on? Gaaah! What am I getting myself into!

So this means that every sound your microphone picks up around you will be translated into this new high-pitched, supersonic, electronic, robotic, ’22 electrode’ tone. You don’t hear low pitched sounds.

My god, you can see why I have waited so long before I do this! It is going to sound like robots, darth vader, electronica, screaming cats, El Horiffico!

And the SCIC pamphlet says: “Don’t worry about how awful the sounds are at first. You’ll get used to them.”

Like Rudd telling us the stimulus package has worked – how very, very reassuring!

In short – if I were to calculate how long it would take me before I am hearing quite well out of my implanted ear. I would say …. by Christmas? That’s almost 5 months of hearing rehab. Cool. I sound like Amy Winehouse (mum, she’s a jazz/blues singer that’s on drugs and sings about it – way cool. Love kate).

 

How much did the cochlear implant cost me?

Cochlear implants are expensive.

In Australia, they cost almost AUD$25,000-$30,000. And that’s just for the surgery and implant, not for the rehabilitation and software ‘mapping’.

Luckily, I had private health insurance, which meant the entire amount was covered, except for one payment of AUD$250 night in hospital as excess. I was also really lucky that my doctor and my anaesthetist didn’t charge me the regular ‘gap’, which can be a couple a thousand dollars (thanks guys – you really made my day).

But if I hadn’t had private health insurance I would have had to pay the full amount, or go on the waiting list at the Sydney Cochlear Implant Centre (SCIC).

SCIC receives VERY limited funding from the NSW Health Department for a limited number of cochlear implants for public patients – something like 44 a year.

And considering that 1 in 6 people in Australia have some degree of hearing loss, that numbers seems extremely, pitifully small!

Anthony Roberts wants the Government to support the Sydney Cochlear Implant Centre.

If you are interested, read a request by Liberal member Mr ANTHONY ROBERTS (Lane Cove), Legislative Assembly, 5 March 2009 for more funding for the cochlear implant centre from the government – and then skip to the bottom of this very moving speech, and see how many voted NO! I couldn’t believe it. Shame on them.

Jillian Skinner has been a very vocal supporter of cochlear implants, and good on her. Read a short article here about the lack of funding given

Jillian Skinner, Shadow Minister for Health, and Deputy Leader of the Opposition, is a supporter of the SCIC.

by the current state government.

 In America cochlear implants cost up to US$40,000, and I am not sure that they are covered by any sort of national medical scheme. Being deaf in America would suck.

But get this – and this is the thing that annoys me most.

So I get a cochlear implant for $25,000, and it cost me $250. It is regarded as a prosthesis.

My hearing aids cost me AUD$4,000 … each. And they are regarded by the government as a luxury item.

So, my private health fund gives me back … AUD$600 all up for those hearing aids, and then tell me I can’t get new ones again for several years, even if they break, or I lose them, so I can ‘re-earn’ my health fund points. Hearing aids last up to 5 years.

So hearing aids were more expensive for me to get – costing AUD$7,400, plus batteries, plus audiology appointments, than a cochlear implant.

It is actually cheaper for the people of Australia to get cochlear implants, whether they need them or not – but only if they win the ridiculous race that the current government makes us run – to be one of only 44 people in Australia that will be helped financially to hear again. And 1 in 6 people in Australia have some form of hearing loss. Check out the Access Economics ‘Listen Hear’ report for that figure.

It is ridiculous, but Australia’s hearing health system is operating on an antiquated model – nothing has changed much since they developed the system in the 1940s, following the world wars, and providing for the many new ‘noise-deafened’ veterans.

In fact – it is cheaper for me to buy a return ticket to the UK, stay in London for a week, chilling out, and get a pair of hearing aids free through the UK’s National Health Service, and then fly home – cheaper than buying them here in Australia.

Something is wrong with this model. And the Labor government is in charge of it. And they are doing nothing about it.

I know because I have been to see the Minister in charge of this portfolio, not once, not twice, not three times, but I have been about 5 times to tell them that their hearing health set up is not working, and is not fair.

*sigh*

One day it will change, but only because people like me – the ones who actually use the technology, and need it - make a racket about it.

 

2.5 days until surgery

So near… not long now.

What is the scariest thing about the surgery for me? I often wonder if I am over-reacting a little, but if you read the list of ‘possible risks’ to cochlear implant surgery, it is a bit freaky.

My fears, outlined in chronological order:

My worst fear is, of course, dying under anaesthetic.

Most people would say “Pffft! As if that’ll happen! You’ll be fine!”

But I think it’s a real fear, though rare.

My father was a paediatrician in a town in New South Wales, and us kids would often overhear stories about patients. One particularly harrowing memory I have is of a story about a group of 14 year old girls from another high school near mine going on a joy ride late one night in their parents car, and getting into an accident on a rural back road. The accident was serious, but most of them got away with broken bones and concussion.

One of the girls had to go under a general anaesthetic to fix her shattered leg. She died under the anaesthetic, and it was later discovered that she had underlying heart problems that had never been diagnosed. I remember noticing dad was quiet for a while after that. I think I was about 10 or 11 when that happened.

So, that is fear number one.

Fear number two is facial paralysis.

Apparently the surgery site is so close to a bunch of nerves in your face, that you can get paralysis down one side of your face, and it goes all lopsided. And though I am not a vain person, I don’t particularly want to look like Jabba the Hutt from Star Wars. But I guess if it happened it wouldn’t be the end of the world. Ok, I’d probably scare my little nieces and nephews until they were old enough to understand that ‘the monster is Auntie Kate’, and have to eat through a straw for the rest of my life, but I know Ben and my family would still love me. (hopefully)

Fear number 3 is loss of taste, or change of taste.

Again, because the surgery is close to a bunch of nerves, there is the potential for interference in the taste buds, either on one side of the mouth, or all over.

Now, my little brother once told me a story about a friend’s father who had to have a life-saving operation on his brain, but they were going to have to go via a particular nerve – and so the surgeons actually gave this man a choice – either lose your hearing, or lose your sense of smell & taste.

This guy chose to lose his sense of taste… (hey, I would have done the same, I think)

And he later said it was the worst thing he could have done, and if he had known what it was like, he would have chosen his hearing.

Well, I think he sounds a bit crazy, but – could you imagine not being able to taste, or smell anything??? At least you could eat those Brussels Sprout and Watercress Smoothies without gagging, so you’d be healthy without the pain … but what greater experience is there than the scent of a fresh coffee, baking bread, the taste of a homemade pie, a hot pizza, a cold beer, a fresh strawberry…

You also wouldn’t be able to smell burning if there was a fire, or smell food to tell if it’s off or bad. Imagine discovering the funny texture of the milk was because it was off! Gah!

So, you can understand the worry there too.

Fear number 4 is that the cochlear implant might just not work at all.

I can’t put my hearing aid back in ever again after the surgery, so this is why they want you to get as little help from the hearing aid as possible.

I have already mentioned that I don’t get much speech recognition from the hearing aid – but I can hear some environmental noises, and it kind of balances my head to have both hearing aids in.

So, the thought of something going wrong and being ‘one-eared’ forever … it’s kind of worrying.

And finally, last fear, number 5 – is dizziness.

Because the surgery disturbs the inner ear, the balance centre of the body, there is potential to be completely out of balance, dizzy and nauseous for a number of weeks or even months after the surgery. That …. would just suck…

So there we have it. All my fears rolled into one post. If this was on paper I would symbolically burn it. But because of the digital age, I’ll just press publish, and let everyone else have nightmares about it.

 

So … what’s actually going in my head?

Ok, the question I get asked regularly is if a cochlear implant is where I get a cochlear transplant from a dead person.

BE-BOW (*game show button noise*) … WRONG!

I simply become a bionic woman via the insertion of electronic electrodes into my inner ear, and I will forever have to wear a magnet on my head, which could get caught on the fridge (perhaps if I was really drunk), or to the car (getting in and out, maybe drunk again).

You also only ever get ONE cochlear implant at a time. Most people wait several years before getting a second, if they get one at all. The majority of people only have one.

To give you the idea of the fear and loathing I had to get over – here are some pictures of what is going on and in my head, as of this month:

This bit goes INSIDE my head. Yaay!

Ok, so this bit is the bit that gets put in when I go into surgery. Scary? Yes. They drill a hole here, sand down some bits there, put back the bit that was missing there, and then patch it all up and hope for the best.

You can see why people always harp on about which are the best surgeons.

Well, my surgeon has the nicest teeth.

But seriously, I was going to ask him my big, silly fear -  if anyone had died under this operation – but at the last minute, all I could get out was “so…. I guess you’ve done a lot of these before..?” And he was like “Hundreds”. I couldn’t bring myself to query how many of these were alive, but I figured I hadn’t seen him on Australia’s Most Wanted, so I was probably ok.

Ok, and now for the external part:

This part is the processor, and goes outside the head.

So, I must admit to being disappointed that the great scientists of the world have still not managed to create a ‘wireless’ Cochlear Implant.

It still just looks like a really crappy hearing aid. Unfortunately, the very worst thing about it is the magnet and the wire. Can you imagine walking around for the rest of your life with a magnet and a wire on your head?

You have to be pretty desperate to want to do this.

But I have to remind myself – at the age of 13, I felt the same way about my new hearing aids – and now I barely notice them. In fact I love them. I haven’t gone so far as to name them, as some people I know do (I kid you not) … but I hope that one day, I too, will learn to love this ugly guy as much as I have come to love my hearing aids.

My beloved Hearing Aids - for want of better name - H1 and H2. RIP H2.

I will certainly miss my beloved hearing aids. (Though I will get to keep one! But it’s still sad to never to be able to use one in my right ear ever again. Sad and scary.)

Because once you get an implant – you can never ‘turn back’ so to speak. It’s like joining a spooky cult where they brain wash you and get you to sell your soul and drink kool-aid. Ok, am definitely joking now, but have to lighten the mood a little. Because the idea that I can never back out of an implant once I get it is scary. So it’s good bye hearing aid.

Perhaps I’ll have a little funeral for it? Like my work colleagues had for my fish when it died. They kept it in the freezer for me and everything (I was away on annual leave) so that I could have a ceremony when I got back. Our own mini-morgue. And our Brand Manager even made me a match box coffin for it.

So perhaps, this is the therapy I need… A hearing aid funeral … to say goodbye to “H2″…

 

How do you know when you are ready for an implant?

Knowing when you are ready is a difficult question – because the outcome can be so varied, it is really difficult to apply one methodology for selecting a candidate to all possible candidates.

The audiologists can give you hearing tests, but they are not the key indicators as to whether or not a person will benefit.

I have met people with positive and negative experiences of implants, but all of them seemed to agree that, mentally, you need to be prepared… because it is tough. It apparently seems to be better to have had some degree of hearing before…

Babies get implants too! And apparently you benefit more the earlier you have it done - because you grow up used to that sound.

And children implanted at a very young age seem to benefit the most! (from what I have read, and been told). Can you imagine a little baby going through what I am about to go through? I can’t imagine how parent’s must feel. Well, I guess I could imagine a little bit, actually! Fear for the pain your baby might have to endure with the operation, but then hope and happiness that they will be able to hear!

I am glad I am going through the Sydney Cochlear Implant Centre (SCIC), because they have dealt with hundreds of people getting implants since the 80s. So they have really had the experience of seeing which implants worked with which people…The SCIC were the ones that initially said to me: “You are not deaf enough to benefit from the implant yet” , and then again, said it every year, even when other private clinics were saying “go for it” (those private clinics probably stood to benefit financially from me getting an implant).

The speech perception tests the audiologists do to tell if you are ready for an implant are always interesting – this is where you sit facing a big speaker in a sealed audiology room. You wear your hearing aids, and repeat back a list of sentences and words you hear.

I just get such a shock from these tests, every time, because it always reveals to me how deaf I am, and how much I rely on lip-reading in day to day life.

I mean, most of the time I, and others around me, forget I am deaf. To give you an example – I can usually hold a normal conversation with someone in a quiet room, ‘hearing’ everything that is said (unless they mutter a lot, have a teensy-tiny voice, or have an incredibly strong accent!). But if you told me to turn away from that person, or if they held a hand up in front of their mouths… I would be stumped.

In the Audio workstation you can see the speaker in the corner, which you sit right up close to, and listen. The room is padded all over with carpet, and is so quiet, I can feel my brain squeak. If that is possible.

Crazy, it amazes me every time I do the test. I sit there, staring at this black speaker in this quiet, quiet room. And try to repeat back what I hear. Usually I can pick up one or two words, and then that means I guess the sentences…this always gives me kind of a fake score – like “oh you can hear 40 per cent of sentences”, when I am actually only picking up 5 per cent, and guessing the rest!

This time the audiologist used the word test – where a list of words are said, in no particular order … so you have no context in which to put it – making it a lot harder than a sentence recognition test.

Picture this – the Audiologist says to me: “OK, just relax, and repeat back to me exactly what you hear.”
Me: “Ok…. ” [list reading starts through the speakers] “…um …. Mmpff …. rdmmpff, or could be mmmmpghhg…. um, mmmppph. Perhaps mooommm?”
Audiologist: “Hmmmm… sounds like your hearing might have dropped a bit since the last time you were here.”

And “ding ding ding!!!” I am finally a candidate for an implant!

Well of course it isn’t quite as simple as that – I had had a barrage of other tests when I was younger, but what we were really waiting for was for my hearing to get worse.  As my friend Abigail says – it was one of those bizarre situations where you are actually happy to fail a test.

I guess, the moment I knew I needed to get an implant was when I realised that my boss Penny, having come back from a 5 week trip overseas, hadn’t just relaxed so much,  that she was talking quieter. hahaha

So, yeah, I am ready. bring it on.

 

Who am I, and why this blog?

It is 3.20am in Sydney, Australia, and I am awake! Why you may ask?

I can’t sleep because, in 5 days, I am getting my first cochlear implant.

I have waited over 10 years for this moment.

I am profoundly deaf, but it wasn’t always this way. I grew up with normal hearing, until I had a hearing test at 11 years old. They discovered I had a mild to moderate hearing loss that had gone unnoticed for a few years. What a shock! I had always wondered why I didn’t like talking on the phone as much as other people – or why my friends always told me when my name was called in school assembly.

It was because I was struggling to hear! Unfortunately for me, the news was not good – the doctors had no idea what caused my deafness, and they predicted it was degenerative, and would worsen over the years. So began my journey into deafness.

By the age of 18 I was wearing hearing aids all the time, and by 24 I had to stop using the phone altogether. I am now 29years old, and have been ‘profoundly’ deaf for 5 years.

Have a look at my audiogram below to see what it actually means to be ‘profoundly deaf’:

This audiogram depicts the full spectrum of hearing loss, and as you can see, I am waaaaay down the bottom!

So, I don’t hear much without my hearing aids:

• I can’t hear my alarm clock in the morning.  I get my partner Ben to wake me, or I just wake up naturally.
• I can’t hear on the phone or on a mobile. So I use a TTY phone, msn, text, fax and email.
• I can’t hear people’s voices at all. With hearing aids, voices are muffled, so I lip-read.
• I can’t hear music – but I can with my hearing aids. I love music, and even used to work for Rolling Stone Magazine.
• I can only just hear trucks and aeroplanes, but only if they are close by. With hearing aids they are annoyingly loud.
• I can’t hear my own footsteps or my own voice without my hearing aids – and I have to say that is the weirdest feeling.

So, there you go. It’s hard being deaf, but you get by. Sometimes I actually like it.

Haven’t you ever walked down a busy road, or been in a noisy room, or heard a baby crying on a bus, and just wanted to stop all the noise? Well, I can! It’s the best thing about being deaf. One minute there is a racket coming through the hearing aids, next minute, just wonderful silence, and I can think again.

Anyway, back to the story…Everything I had been hearing about cochlear implants was making me think that it might be worth looking into. Afterall – my main wish is to be able to hear people’s voices better, without having to concentrate on their faces so much all the time. It’s tiring reading lips and body language all the time! And some people even talk about being able to hear on the phone again… I can’t imagine it – I have been without the phone for so long, I just don’t really believe it will be possible. But ….. then again …

So, finally, my last assessment at the Sydney Cochlear Implant Centre happened in May this year – and, after years of telling me I was borderline, and was doing quite well without an implant – they finally annouced that, “gee, you are so deaf now, you would probably benefit from an implant, and now was the time to take the leap of faith. ” Ai ai ai! Mon deiu! The time has come!

I decided to start this blog for my friends and family so they could see what I am experiencing when I get my cochlear implant.

It’s probably also going to be a good way for me to vent when the going gets tough! And it most definitely will get tough. Most people don’t realise that an implant does not give you normal hearing, and takes up to a couple of years of rehabilitation before you really start hearing things better.

But I guess the most important thing for me in writing this blog is that I get to keep it as a diary so I will have this experience on record for the future …  and, as well, to share those experiences with whoever is interested.

Because if you don’t know much about it – getting a cochlear implant is a huge decision, not one to be taken lightly, and it most certainly does not ‘cure’ deafness.

And my cochlear implant surgery date is Wednesday 1st July… Only 5 days away.

The countdown begins …