Hearing Test for the Deaf

I had to have a hearing test today.  So now it's official.  I'm totally Deaf.   Both ears heard zilch.  I was tested at 100 db and heard nothing.

So what is 100db?  Onto google and I found a comparison chart...

I didn't know that the loudest sound possible was 194db but wonder what might make that kind of noise. Years ago I was tested with equipment that tested up to 140db and nothing registered then either - so I presume you could safely say I'm totally deaf in both ears.

The reason I had to have my hearing tested is that I've applied for a fire alarm (vibrating).  At present, if there was a fire at night, the only thing that might wake me is my cat.  The local fire service don't believe puss is reliable, so have suggested a vibrating alarm. Because I live alone and have a great need for it, I can apply for funding.  They are usually very expensive so they're not in my 5 year plan, and I've always said you have to die of something anyway!!  And hence the reason for the test - to satisfy the funders that I am in fact... Deaf.

So this afternoon I spent a few minutes in an audiologists office with a pair of headphones on my head while I tried to hear one iota of sound.  My reliability of response was consistent.  That's good.  I like to be consistent.

I was rather pleased to put my implant back on and hear again afterwards.  The implant puts me back in the speech zone.  I can't wear the implant at night though as it falls off so no point and this is why i need the alarm.

Next time I'm in Auckland, I'll get a test done to show you my aided hearing.  I don't have anything current to compare with this test today :)

Cochlear Implant Number 3 - Two Year Review!

I just had my 2 year mapping, about 6 weeks early, as I was up in Auckland for another reason. I had my 18 month review back in October, and at the time I thought there was no real improvement. However, soon after I did notice that for some reason I was hearing better on the phone.

I was still getting some Non Auditory stimulation though, which was getting worse, which meant that the electrode I was hanging onto for dear life, really did need to be switched off, just as the audiologists had been telling me all along.

If I give you one piece of advice that you should heed - it's thus:

Listen to your Audiologist. They know BEST!

They switched off that horrible electrode... and Voila - here are my results....


HINT (open set) Sentences at 3 months: 100%
HINT (open set) Sentences at 6 months: 98%
HINT (open set) Sentences at 9 months: 100%
HINT (open set) Sentences at 18 months: 98% (Grrr)!
HINT (open set) Sentences at 2 years: 100% (Yippee)

In background noise +10db SNR at 3 months: 92%
In Background noise +10db SNR at 6 months: 96%
In Background noise +10db SNR at 9 months: 83% (gone down!)
In Background noise +10db SNR at 18 months: 90% (back up a bit)
In Background noise +10db SNR at 2 years: 100%

In background noise +5db SNR at 3 months: 24%
In background noise +5db SNR at 6 months: 47%
In background noise +5db SNR at 9 months: not tested
In background noise +5db SNR at 18 months: 38%
In background noise +5db SNR at 2 years: 95% (HUGE DIFFERENCE)

CNC Words Alone at 3 months: 63%
CNC Words Alone at 6 months: 65%
CNC Words Alone at 9 months: 68% (Slowly improving)
CNC Words Alone at 18 months 60% (gone down)
CNC Words Alone at 2 years: 85% (Whoohoo)

CNC Words Alone Phonemes at 3 months: 82%
CNC Words Alone Phonemes at 6 months: 83%
CNC Words Alone Phonemes at 9 months: 87%
CNC Words Alone Phonemes at 18 months: 75% (Gone down)
CNC Words Alone Phonemes at 2 years: 95%

This is a huge improvement, and one that has put a permanent smile on my face. I never thought it would happen, became to believe that this implant wasn't as good as my first! Just goes to show that the brain eventually does start making sense of it, but it might take a bit longer the 2nd time around when your brain isn't quite as fast!

Thanks to my Audi's for getting me there, and for the Docs who persevered! Any sane person would have run of the hills ages ago!!!

Cochlear Implant - 18 Months Review

Just had my 18 months mapping with this new implant. For those that have forgotten, this is my third implant, after the first one failed. Reimplanted in same ear. Electrodes migrated, so reimplanted again in the same ear.. I feel I'm not doing tooooooo badly...


HINT (open set) Sentences at 3 months: 100%
HINT (open set) Sentences at 6 months: 98%
HINT (open set) Sentences at 9 months: 100%
HINT (open set) Sentences at 18 months: 98% (Grrr)!

In background noise +10db SNR at 3 months: 92%
In Background noise +10db SNR at 6 months: 96%
In Background noise +10db SNR at 9 months: 83% (gone down!)
In Background noise +10db SNR at 18 months: 90% (back up a bit)

In background noise +5db SNR at 3 months: 24%
In background noise +5db SNR at 6 months: 47%
In background noise +5db SNR at 9 months: not tested
IN background noise +5db SNR at 18 months: 38%

CNC Words Alone at 3 months: 63%
CNC Words Alone at 6 months: 65%
CNC Words Alone at 9 months: 68% (Slowly improving)
CNC Words Alone at 18 months 60% (gone down)

CNC Words Alone Phonemes at 3 months: 82%
CNC Words Alone Phonemes at 6 months: 83%
CNC Words Alone Phonemes at 9 months: 87%
CNC Words Alone Phonemes at 18 months: 75% (Gone down)

So no real improvement still in my opinion! I still struggle enormously in background noise, and still did much better with my original implant the N22 before it failed. I also feel that the sound quality of the Freedom has never been as good as the N22. It's much harsher.

But this is still miles better than being totally deaf, so in those terms, I'm happy to be implanted and hearing!

Cochlear Implant - 9 month Review

My 9 month review for my new Cochlear Implant was yesterday. Most results improved, except for the ones in background noise....


HINT (open set) Sentences at 3 months: 100%
HINT (open set) Sentences at 6 months: 98%
HINT (open set) Sentences at 9 months: 100%

In background noise +10db SNR at 3 months: 92%
In Background noise +10db SNR at 6 months: 96%
In Background noise +10db SNR at 9 motnhs: 83% (gone down!)

In background noise +5db SNR at 3 months: 24%
In background noise +5db SNR at 6 months: 47%
In background noise +5db SNR at 9 months: not tested

CNC Words Alone at 3 months: 63%
CNC Words Alone at 6 months: 65%
CNC Words Alone at 9 months: 68% (Slowly improving)

CNC Words Alone Phonemes at 3 months: 82%
CNC Words Alone Phonemes at 6 months: 83%
CNC Words Alone Phonemes at 9 months: 87%

My map itself - I am weird about the high pitches, I obviously don't like them much so tend to have my comfort levels decrease as the pitch goes up. So this time my audie tilted the map up to raise the levels slightly in the high frequencies. It worked - my scores (apart from background noise) increased, however today I'm getting non-auditory stimulation so they in the high frequencies which is an utter pain. So either an electrode needs to be turned down again or one needs to be turned off. I am hoping it's not the start of anything serious!

For the last 2 maps, my threshold levels have had to be increased - each time I get a remap, I can no longer hear where I heard it the first time I was switched on. However I have a very wide or large dynamic range so no one is worried about that at this stage.

I am worried by the fact I don't cope so well in background noise - espeically compared to the first implant (N22) which I had for 15 years and heard in background noise no problem at all, and this frustrates me. I would like to know whether it will improve, or whether this is as good as it will get.

Back to the clinic on monday to fix that electrode I hope!

Robyn Carter - In Concert!

I have been partaking in some Cochlear Implant research in conjunction with Auckland University. The research is being done to find out if people with Cochlear Implants can learn to sing in tune. So far I've had two singing lessons and I'm really enjoying it.

I have been encouraged by the researcher, that I can sing in tune, and that I have a good quality voice for someone who hasn't done any formal training. I have been given tips to increase my range and to practise to learn to sing in tune. I do need a keyboard so I can practise singing the notes back, but as yet haven't been able to find one.

Anyway - down on the farm, in the middle of nowhere, I found I had a very very appreciative audience, so last night, I gave this appreciative audience a concert - and this is the result....

They heard me.....



So they came closer - they must have liked the sound...



Some were rude at first - turning their backs. They obviously didn't like the song.



So I changed song to something more cheerful and jaunty and wow - I had their attention...



Just to show you I had the whole herd in my hand, hearing me sing....



I could get used to this - I must ask for some moolah next time. Looks like I had a standing ovation too....



Encore...



Encore.... Encore....



I might go on tour!!

6 months post switch-on - Cochlear Implant Review

It's now been six months since I was switched on with my third Cochlear Implant. Things are finally starting to go back to what I was used to with my first one, which worked well for 15 years before failing.

My results this time were this..

HINT (open set) Sentences at 3 months: 100%
HINT (open set) Sentences at 6 months: 98%

In background noise +10db SNR at 3 months: 92%
In Background noise +10db SNR at 6 months: 96%

In background noise +5db SNR at 3 months: 24%
In background noise +5db SNR at 6 months: 47%

CNC Words Alone at 3 months: 63%
CNC Words Alone at 6 months: 65%

CNC Words Alone Phonemes at 3 months: 82%
CNC Words Alone Phonemes at 6 moths: 83%

pretty much the same, except a big improvement in background noise, although at one month post switch on that 47% was actually 86% so for some reason I did better back at one month.

I have been practising a lot though. I've been getting audio books out from the library and listening to them - about two per month. At first I needed the book to follow along, but now I don't need that and can just listen to the book while working on photographs. I have to keep listening though, as it's so easy sometimes for my attention to wander and then I get totally lost and have to go back.

I've also bought and borrowed CD's of New Zealand Birdsong. I've been listening to those and relearning the sounds. I used to know them all with my original implant, and they're slowly coming back to me. It has paid off as I was out walking in the country on Saturday and I recognised the bellbirds. So I was thrilled.

I'm finally doing better with the TV as well. I can understand some without text and without the TV cable. With the TV Cable I can follow a TV program well without captions. Still - it's hard work - something to do with the way sound is compressed for the TV. I much prefer captions, but not everything is captioned here in New Zealand, and my last house sitting job had a TV with no captioning ability. In some ways that was good as I was then forced to use and listen without them, and I think that went some way in improving it.

Practise makes perfect.

I knew there was a reason...

CI 3 month Review - Hearing Like a Bat!

Just been to my three month review. Very little changed, my map is staying very stable which is really nice. After tweaking the high pitched electrodes in a very minor way, I was given did an aided audiogram test. The results of this was amazing. Maybe I'm not Robyn any more, maybe I'm Batman!!! Take a look...



This is pretty amazing as I don't think that at any time in my entire life, have I had as good hearing as this result today. This is like having 'normal' hearing - whatever normal is!!

But before you get really excited about this, remember this is just the test of hearing sound - at what level the sound is coming into the implant. It's not the test of my understanding of sound. Understanding of sound is revealed in the HINT setnence tests and CNC words (single words) test. Unfortunately the equipment wasn't being very well behaved today, so I go back next week for those tests. Watch this space!! Last test I got scores of 98% in the hint sentences and 62% for single words. It will be interesting to see if they have improved over the last month. Anything is possible!

But on the whole - I'm feeling very happy with the results of this. I have my Implant team to thank for the result too. My surgeons - Robert Gunn & Bill Baber, who placed the electrodes so carefully to give me maximum benefit. I'm sure they know the inside of my head there very well by now! My audiologist - Ellen Giles - without her expertise I wouldn't have such a great map. And to Gayle - who teaches me how to listen and hear with it all over again. Without them all I'd still be as deaf as a doorknob!

Cochlear Implant Update

I keep getting little messages in my inbox asking...

'How's the hearing?' and
'We haven't heard you talk about your CI - trust it's going well...?'

...and I keep meaning to give an update but keep ending up being sidetracked. First my gorgeous burmese cat went missing, so I was too busy delivering flyers and trying to find her, so the updates went by the by. Then I took off for two weeks holiday to stay with family and friends in the South Island. I went because I got a $10 airfare to Christchurch, and I am a person that simply can't pass up bargains like that. I got back last night to find yet another query in my inbox asking about my hearing.

So - I now feel I should let you know that....

Yes- I'm hearing. It's really exciting, and I'm doing extremely well.

The week I left to go the the South Island I had my one Month post switch on mapping. The results were....

98% open set sentences without lipreading in quiet. (Now that's more like it - back to my original implant score before it failed!)

98% open set sentencces without lipreading in noise (+5db) Wow - that's incredible - I don't think I've ever got that score before, even with my old original implant which was good.

86% open set sentences without lipreading in noise (+10db). Still pretty good, and still better than my original implant before it failed.

66% single words only without lipreading. This is a score which has doubled, as only two weeks before it had been 33%. So the speech discrimination is improving daily.

Am I pleased? Heck yeah - I'm thrilled as after two years of struggling with failed equipment I finally feel that I'm getting somewhere again. I'm making phone calls again, still not with complete ease, but am able to hold my own and get most of the phone call is about.

I picked up my cat from the cattery this morning and she's spent the day wandering around the house meowing. I found I could hear her call from every room. And I noticed I can now hear when the washing machine finishes.

Just before I went away, I fired off an email to my surgeon to tell him the news, and facetiously asked if I should be aiming for 100% scores. His answer.....

'Why stop at 100%?'

Why indeed? !!

Of French Horns and Bomb Raid Sirens

This new implant is wonderful. I am now able to use the phone with confidence at long last. I was forced into it really as I have had to ring around all the vets to see if my old grey girl has been handed in. Unfortunately - she's still missing and i'ts now 9 days. Her poor mate sits at the top of the stairs every night waiting for her to come up. Sad.

Anyway, for the past two weeks I've been pleasantly listening to a kid practising his trumpet or french horn. I figured this kid must be in a band or orchestra gearing up for a concert as it would simply go for hours.

Bron came over yesterday and we were having a coffee and chatting when the trumpet or french horn started up again. The conversation went something like this...

Bron: "Can you hear that"

Me: "Yes - this kid has been practising for two weeks now - very dedicated budding musician obviously"

Bron: "It's a dog howling"

Me: "Rubbish - it's a french horn or something"

Bron: "no it's a dog - I can hear the voice breaking, but it is very low, and quite weird for a dog"

Me: "Really?"

Bron: "Yes - it sounds like a World War II bomb raid warning"

Me: "I guess my implant needs adjusting again!"

So gone are my visions of this dedicated budding musician practising for all he/she's worth, and instead I have the vision of my neighbour's lonely dog howling mournfully for company.

Live and learn :)

I'm not alone in 'mishearing' with a new cochlear implant. A friend wrote.

"The first time I went running with my second implant I kept stopping trying to figure out what the God awful noise was. I was running on a wooded trail and started to get freaked out thinking something was following me. Seriously it took me a good mile to figure out I was hearing myself gasp for air."

I have this vision of monsters breathing down her neck while on her run - I'd be freaked too, as I've heard my own footsteps echo at night and wondering if someone is following me too.

I guess it takes time for the brain adjust all over again, but in the meantime, I'm sure I'll end up laughing a lot at my ear mistakes!

Missing - Lost

Missing/Lost
Northcote/Hillcrest Area

Much Loved Family Pet, Burmese Blue, 13 years old

Healthy but slightly arthritic

Very Vocal, Likes cars, Nosy

May be locked in a little used shed/garage.

Answers to the name of Mika (Meeka)

Owner desperate to find her.

That's the flyer I have been delivering around my neighbourhood today. I've searched high and low, canvassed the neighbourhood, and put up flyers in the local businesses and shops, and all the vets in a 2km radius.

She's old, doesn't ever wander, and recently I bought a new bed complete with an electric blanket for her which she loved. I haven't seen her since Wednesday afternoon. Wednesday night was awful - she's slept on my bed for 13 years, and I really noticed she wasn't there. I keep hoping she'll walk in, demand food, then head to her new bed. But I have a sinking feeling she's not coming back.

We have a safe neighbourhood. There's nothing that's dangerous out there. No Snakes, Bears, wild animals. She doesn't go near the road as she doesn't like cars, in fact I've been scouring hte roadsides/verges in case there was a cat who has been knocked over, but there has been nothing. No sign of her at all. i suspect she got nosy, climbed in an open window nearby, or walked in the door, and got locked in without someone realising.

While my cochlear implant is fantastic, I doubt I will hear her meow over the other noises around, but it's the sound I most want to hear right now.

It's a Success...

It's now two weeks since I was switch-on with my new ear. These are the things I have been hearing...

Indian Mynah birds fighting on the neighbour's roof.

When someone talks to me from Facebook there's a quiet 'click' sound that alerts me to the fact they've messaged me on chat. I had no idea that it gave a sound at all.

Spider Solitaire - has the most wonderful sound when you move the cards. I can't stop playing it just to hear it.

You Tube - Susan Boyle. The implant still sounds a bit flat, but I know the song and could follow aong. I long for a more depth of sound, which I know will come over time. But it was nice to actually watch her vid when I had no sound, and then a week later when I did have sound. The difference was palpable!

You Tube - Sound of Music at Grand Central Station - Antwerp. Wow - to hear the music and and see the dancing as well. I've watched this 100 times already. Fortunately my friend showed me how to download it onto my HDD so I wouldn't use up all my internet alllowance!

The Cats - man - they're loud - have they always meowed this loud?

The Phone - am phoning lots of people and can even pick up the phone when it rings without breaking out in a sweat! I hadn't realised how nervous I had become of the phone in the last two years.

Skype - After much angst getting the microphone to work on my computer, I can now use skype and rang a friend I hadn't spoken to on the phone before. Talked for one hour without any difficulty at all.

Hired DVD - plugged my cable into my laptop and have been listening to movies with and without captions no problem at all.

Talking Books: - listening through my laptop a talking book. Can get about 90% without reading the book with it.

Just hearing the keyboard as I type is lovely.

I keep thinking there's something wrong with my car when I drive it - it's been so long since I've heard an engine, I'm not used to it - so I turn the implant off while driving to stop me wondering if the motor is about to fall out!

Talkback Radio - can follow along in the car and get 95% of what is happening, even those that phone in, where it's not as 'clear'!

Wow - I can't believe two years have gone by and I missed all these things so much. Most people would take all these for granted, but each new sound I hear gives me a thrill that I cannot explain.

I finally feel reconnected again. Long may this current cochlear implant live!

Wired for Sound once Again

The 22nd April took a long time to come. In fact I was emailing my implant team my countdown on a regular basis in the last week. I think my Facebook friends also got sick of it!

I didn't take anyone to my switch on this time around. I think the Novelty of being switched-on has worn off the third time around!

I arrived and the usual thing happened - just like last time. First I had to listen to the sound I could just hear to set my threshold levels, then I had to apply each electrode to 'medium' loudness for my comfort levels. A few sweeps to make sure I could hear each beep, and they were all even, and then I went live. This process would have take the best part of an hour.

Ellen did the usual thing and told me that I would not like the sound all over again. I did my nod - of course - I've been through all this before - of course!

And so Ellen and Gayle started talking to me.

This was the conversation...

Me: "Oh my god - Oh my god"

Ellen: "What - something wrong?"

Me: "There are no chipmunks this time - it sounds almost normal"

Gayle: "Yes - well - we shot them all before you arrived!"

I could not believe it. We sat and talked for half an hour, then my brain wanted more. Everything was becoming quiet after just half an hour. So we did another mapping right there and then and I got a lot more volume.

It was now lunchtime so I went up to the cafe and sat on my own eating my lunch and revelled in the noise, just hearing everyone talking around me at other tables. Chairs scraping, cutlery banging, the coffee machine brewing. It was bliss. These are sounds I had not heard for the six months I was totally utterly deaf. I once again felt 'connected' to the world and it's a really really nice feeling.

After I had finished eating, I thought about texting my friends and family to let them know of my success. But I was hearing so well that I decided to ring them. So then spent the rest of my lunch hour ringing up all my friends and family to tell them I could hear.

Wow - this is definitely not normal, and it's not something I could have done at my switch on day last year. A lot of family weren't home, but the people I did get hold off were amazed and thrilled, and very excited. I dread my phone bill!

I don't think it was something the Audiologists were expecting either! After lunch we did one more mapping, and I was itching to ring the surgeon to tell him and to organise a appointment with him to check my ear as it was still painful. However, Ellen did that while I went off and had a session of testing with Gayle. It was promising and I did well, but I was getting really tired.

I was surprised when I got into my car that the radio was on. It's probably been on the whole time I've had it and didn't know!!

Called into my surgeon, Robert Gunn on the way home. My ear had fluid behind the drum which caused the pain, but no infection (thank goodness) and a small course of anitbiotics to make sure it didn't turn into an infection got rid of it over the next few days. He looked very happy with the outcome this time around.

That night I sent an email to him and to Bill Baber who jointly operated on me in March, thanking them for placing the electrodes so perfectly, and that I realised that without their expertise, I would not be hearing so well.

By the end of the evening, I was not hearing as well again, so was thankful I had another day at the Implant clinic the next day.

Another mapping session, then a break, in which I caught up with Colin who was also there for a mapping session, then I went off to get tested again. By the end of the test, I once again had lost all volume and needed more. My brain is so greedy for sound after so long without it.

We broke for lunch and I spent the hour catching up with Colin and his wife Carmen, and their wonderful children I actually didn't want to part ways - the lunch hour was over far too soon. It's always nice to talk to people who have had many similar experiences who actually understand you, and understand where you are coming from.

I then went and had yet another mapping, and that was that. Off into the big world to learn to make sense of all this sound again.

It was All Worth It!!!

This scar of mine - I have to say I'm proud of it because....




It was all so worth it. I'm sitting here tonight, watching 'Stars in their Eyes'. I can follow the music and lyrics, and it's so pleasant. Two weeks ago, I wouldn't have been able to do this.

I know the scar is a bit in your face. But I remind myself that it was a such small price to pay for an amazing, exciting result. People have said I was so brave, but in all honesty, bravery didn't really come into it. If I had been really brave, I would have had it done without an anaesthetic, but being blissfully asleep I didn't feel a thing!

The last two years have been absolutely crap. For 15.5 years I had wonderful hearing with my first cochlear implant. I was able to get 98/99% open set sentences without lipreading. For those that doesn't know what open set is, it's a series of random sentences that are read out to me, which I repeat back. With my first implant I wouldn't only get 1 or maybe 2 words wrong. Even in background noise, I did extremely well with the implant. In fact, I have to admit, I then took my hering for granted.

Then in June 2007 I was thrust back into silence overnight when it failed. Not complete silence, but the implant was uncomfortable to wear, and the amount I could hear was then only about 20 to 30% - A huge difference. Fortunately, I could still lipread and I got by, but phone use was out, and socialising became difficult in background noise. I began to become a bit of a hermit. However, I kept a brave front, and I put my trust in my implant team to get me right again.

During this time of waiting, I was shocked about how difficult it was to deal with every day occurances. I had simply forgotten over the previous 15 years, just what it was like being totally deaf. Many of my past blogs deal with the difficulty in getting good customer service. I hope I never forget now, and will continue educating people despite my newfound hearing.

In March 2008 I was finally reimplanted and the initial switch on with all new technology went really well. It didn't sound as good as my first implant, but that was to be expected as I had been without useable hearing for 9 months, and the electrodes were all different - it was like being switched on for the first time again.

But after that first day, it never really improved. The chipmunks never went away, and the twang was awful. I got facial nerve stimulation (FNS), and over time, the sound got worse and worse. I was often reduced to tears of frustration and I finally asked for an x-ray. Sure enough, the electrodes had migrated out of the cochlea. At least we had a reason and I could now be re-implanted once funding had been approved. Unfortunately this took too long and by Christmas/New Year I was so miserable that I took myself off to my GP and sat and cried her office. She put me on anti-depressants, stating that no matter what has happened to me in the past, I've always maintained a good frame of mind, but this was tipping me over the edge this time. I had reached the end of my coping strategies.

I took one anti-depressant, then decided that I didn't want them. I sat down and worked out different strategies for coping, which included in keeping busy and socialising more. It worked.

Funding happened and I was finally re-implanted on March 30th 2009, and I was activated on the 22nd April 2009, just three weeks later.

Next blog post: The Switch-on ...

Waiting for Switch-On

My third Cochlear Implant operation finally happened 3 weeks ago on the 30th March.

Just a quick recap - I was originally implanted in March 1993, and switched on in April 1993. I had 15 years of near normal hearing with this implant (Cochlear Corp N22). This failed in June 2007. In March 2008 I was reimplanted with the new Freedom implant and switched on in April 2008. All went well for a few months, then disaster struck and my implant electrodes migrated out of the ear. A very rare occurance. I was reimplanted for the 3rd time on 30th March 2009 - and switch on is scheduled for 22 April 2009.

Funny how all my implants have happened in the month of March.

30th March has been and gone and I'm now the proud owner of another lovely scar. Once again the original 1993 incision was used - the big old fashioned C.



This was taken on my phone so the quality might not be the best!! I can't help think my surgeon should change jobs and apply for the a Hairstylist Position in Vogue!!!

Because of the same scar tissue that dogged the March 2008 implant, only 17 electrodes were able to be inserted, but that was the same as 2008, so I have high hopes that, providing the electrodes do not migrate, that I will hear very well indeed with those 17.

Unfortunately I don't know much more than this as once again I reacted to the operation and woke up with my terrible vertigo. I stayed 2 nights in the private clinic, then was sent home. 4 hours later I hadn't moved off my couch, couldn't eat, drink, and was pretty sick, so my daughter and my mother called an ambulance and had me carted off to North Shore Hospital. I was admitted and only got out on Friday. Spent most of the time with my eyes shut as the vertigo was pretty bad. Which meant communication was difficult as to 'lipread' I need to open my eyes, but when I did the world spun. A pretty miserable state.

The vertigo finally subsided and I got home on Friday, nearly 3 weeks after my operation. It's nice to be home, but I'm very weak - flat on your back in hospital does nothing for your fitness!

Since the operation, my tinnitus has been going like the energiser bunny with those Duracell batteries - going and going and going. It's been driving me nuts. I have percussion in my dead non implantable ear, and a full orchestra in my implanted ear. Trumpets, fanfares, piano, strings, voices. I go from classical, to rock, to spanish, to latin music. I have no control over it. I cannot change the pitch, or rhythm, or even the tune. Lucy in the Sky of diamonds was with me for 6 hours yesterday. Most of the time I have never heard the music before, and I can't help but feel I should be notating it for some future concert!

Today it has suddenly become quieter. Maybe it knows that once I'm switched on in 35.5 hours (not that I'm counting or anything), it will be banished forever.

Switch-on can't come fast enough now. Total silence for the last 4 months has been a trial. My lipreading has improved dramatically, but it's still tiring, and I long for my usual energy levels.

Bring on the Chipmunks - I want to be wired for sound once again!

I have a Surgery Date !!! Wheeeee !!!!

30th March.

30th March

30th March

30th March

30th March

Whew - it's such a relief. Never ever have I ever looked forward so much to have my head cut open. If they could do it tomorrow I'd even be happier, but this at last gives me something to look forward to, and the hope that I might hear something other than my confounded tinnitus all day. The only unfortunate thing is that I will not be able to hear my daughter say her goodbyes, before she goes off to the UK indefinitely on the 12th April. It would have been so nice to be able to at least converse with her properly before she went. But I'm still pleased that things are finally moving.

It's been quite an emotional week. The blow of ACC declining funding, the hope that the Cochlear Implant trust will pick up the tab, and then the hope realised with a date in concrete. I'ts a Monday :)

More tomorrow.....

28 days to go, 28 days to go.......

Finally - The Legal Opinion

ACC sought a legal opinion from Bruce Corkill QC based on Phil Birds report. QC stands for Queen's Counsel - so as far as legal matters are concerned in New Zealand - that's pretty high up. Again I've had to upload them as images. If you need to make your screen bigger so you can read it, you can hold down ctrl and press the + key several times, or you can just double click on a portion of the text which will open them up so you can read it on a bigger but separate screen.








Based on this information - although I think there are a few thigs that aren't correct in these documents, I don't think I have a leg to stand on fighting it, as it boils down to scar tissue pulling the electrodes out.

The Outside Independent Surgeon's Report to ACC...

This is what the Cochlear implant specialist said in his report to ACC. Unfortuantely I wasn't able to cut and paste text but had to upload them as images as it was a scanned document.

ACC Declined Funding for my Cochlear Reimplantation

Ugh.

It happened. ACC denied me funding to fix my defunct, not working Cochlear Implant. It didn't come as a surprise - I had had a really bad feeling about ACC right from the beginning. Probably not helped by the case worker who had been trying to PHONE me despite me putting on my forms that I was unable to hear on the phone!!!

Anyway - their letter verbatim......

We’re sorry, we can’t approve your claim
We’ve been told you were injured on 12/11/2008 while being treated by a health professional. After careful consideration, we’re sorry to say your claim has not been approved.
Why we can’t approve your claim
We’re unable to approve your claim because it does not meet the criteria for a treatment injury.

It goes on to say...

For ACC to approve cover for a treatment injury claim, the following must apply:

*There must have been a personal injury, which occurred when you were seeking or receiving treatment from, or at the direction of, one or more registered health professionals
*The personal injury occurred as part of treatment
*The treatment can be shown to have directly caused the personal injury; and
*The personal injury is not excluded from cover (for example, the injury must not have been mainly due to an existing underlying condition)

The following condition was not identified as being related to treatment in this case:
*Failure of the right Cochlear implant
This is because:
*The treatment you received did not directly cause the condition in question.

A report from the surgeon Mr R Gunn states “At the re-implantation procedure, Robyn was found to have some fibrous scar tissue in the cochlea, and it was only possible to insert 17 of the 22 electrodes. A post-operative x-ray showed that the electrode was well in position”.

In recent months you have had a progressive deterioration in your hearing and non-auditory symptoms which is said to be due to the stimulation of the more proximal electrodes. More and more electrodes have needed to be switched off to eliminate the non-auditory symptoms, so your hearing has deteriorated accordingly.

An x-ray of the implant in late October 2008 confirmed that the implant array has been progressively migrating out of the cochlea. Mr Gunn states “we assume that this is occurring because of scar tissue contraction within the mastoid bone, through which the electrode passes in between the internal receiver/stimulator unit and the intra-cochlear electrode array. This is an unusual complication which has been reported by some cochlear implant clinics elsewhere”.

The claim has been lodged to replace the implant.

Mr Gunn further comments that the migration of the electrode out of the ear “is certainly not simply a function of a disappointing result from the implant replacement operation”.

The underlying hearing loss was present prior to the cochlear implant but you were “hearing very well with her new cochlear implant until the electrode migrated out”.

This is considered to be a rare but already reported complication in some overseas cochlear implant clinics.

External Clinical Advice was obtained by ACC from the ENT surgeon Mr Philip Bird, who specialises in cochlear implant surgery. Mr Bird states that in terms of a physical injury “…the implant itself is not damaged but the electrode has been displaced, possibly by contraction of scar tissue. The extrusion of the electrode meant that the implant is no longer effective. In this respect I think is almost certainly a physical injury given that the device has not been damaged per se. Scar tissue causing migration of the implant necessitating further surgery is not a necessary consequence of surgery. It has certainly been described and is incredibly rare both in the New Zealand experience and the overseas literature”. In fact he notes the incidence is a fraction of 1%.

Legal ECA from Mr Bruce Corkill, QC Barrister. Mr Corkill states:
With regards to a physical injury he states “In the circumstances of this case, the medical evidence is that a physical injury has occurred, namely the scar tissue which is having a critical impact on the implant. However, there is no evidence as to how the scarring was caused – which it would be essential to have if the scarring were to be regarded as a personal injury.”

He goes on to state that with regards to the physical injury being caused by treatment – “The final and critical question is whether that “treatment” is causing the “personal injury”. “Here, it appears that the reverse has occurred. It is the scar tissue which is causing the failure of the implant. On those grounds, then, it is not possible to conclude that there is a treatment injury here, unless it can be shown that the failure of the implant is in some way causing the scarring.”

Claims about scars as personal injuries caused by treatment provided by or the direction of one or more registered health professionals have been the subject of many previous claims over the years. Scars have long been determined to not be personal injuries caused by treatment.

A scar that results from the healed surgical incision is part of the healing process of the body. A scar can grow in claw-like manner into normal skin or other internal body parts such as the ear.

A scar is not a personal injury caused by treatment under the treatment injury provisions. It is the host body’s ordinary mechanism to heal wounds that are the cause of a scar. The incisional wound is a necessary part of the treatment.

The Complex Claims Panel concurred to decline the claim for cover.

*Based on the medical information available, ACC considers that failure of the right Cochlear Implant is not an injury caused by treatment. The desired results have not been achieved in this case. Additionally an injury caused by treatment cannot be found. Accordingly the claim for cover is declined.


So that's it in a nutshell - No reimplantation for me as yet. Funding will have to be found elsewhere to go ahead.

I'm Still Waiting ......

Waiting for anything is always frustrating, waiting to get some vestige of hearing back because of a slow government department is making me want to scream.



Just to recap - I was originally implanted in March 1993. For 16 years I had near normal hearing with the cochlear implant. In June 2007 my implant failed. In March 2008 I was reimplanted and my old electrode array sent back to Australia for an autopsy. A tear in the silicon was found, which was resulting in fluid ingression and loss of sound. Two months after my reimplantation, the new implant started deteriorating. In October it was found that the electrodes migrated out of the cochlea. I'm now totally utterly deaf. Again.

In New Zealand, we are totally reliant on government funding. No private medical insurance here in New Zealand will cover cochlear implants - we're the only OECD country in the world with private medical companies refusing cover them. Government funding falls into two categories. Either - under the DHB (District Health Board, where all my past funding has come from or if you've lost hearing because of an accident, then ACC (Accident Compensation Coporation) would pay for it.

On looking at my x-ray what looks like has happened is that where the electrode array was anchored, obviously swelled, up, and as the swelling went down, it pulled the array out of the cochlea. This is a rare event, but I'm not the first it has happened to, but I am the first it's happened to in New Zealand.

Because this happened after surgery - then it's termed as a medical injury, and is applicable for funding for it to be fixed under ACC.

My ACC form was duly sent off on the 18th November. On the form I put down that I was deaf and they could contact me via email or text phone. The week before Christmas, I rang them via the internet relay to find out where my case was at. I couldn't get hold of my case manager, so left a message for her to contact me via email. She did later that day and in the email she said she was I glad I contacted her because she had been trying to PHONE me! WTF??? I then realised my case manager knew nothing about deafness.

She told me that my case was still at their resident ENT specialist and they would have an answer for me in early January. I told her then that each passing day could mean scar tissue building in the cochlear, and that would lessen the chance of an successful outcome for me. She told me that I could always go ahead and have everything done, and they would reimburse me later. Oh - really? Sure - and just where do I have the money spare for that I wonder?

On the 6th January I rang via the internet relay to find out where my case was back. She explained that she had JUST got the case back from the resident ENT surgeon, and she has been advised to get an outside independent opinion from a Cochlear Implant surgeon in Christchurch. I bit my tongue, as this is New Zeland we're talking about. We're small. Tiny. All the CI surgeons know each other. However, I don't want my case to go offshore so I didn't say anything.

I rang several times over January each time she had no news as it was still in the hands of the outside independent specialist in Christchurch.

On 6th February emailed her and asked if there was any progress. Oh yes, we have to send it to an outside independent Cochlear Implant surgeon in Christchurch and this was sent off on monday. It will take 3 or 4 weeks, and then it has to go to the legatl team for another 3 or 4 weeks!! WTF? I thought she did that back in January? Checking the emails - yes that is what she had done. I expressed to her that I was really unhappy about this as I don't have time for this. Due process she told me.

I re-iterated that she was playing around with my chances of ever regaining hearing again. Due process she said.

Last week I went to see my MP (Member of Parliament) and told him first of the dire problems of Cochlear Implant funding in New Zealand. I outlined that there are 45 people on the waiting list for surgery right now. That's just in our Northern Cochlear Implant programme. However there are only enough implants for 5 surgeries from July to June 2009/2010 and none after that. That we needed more than a bandaid approach to funding - money being thrown at it in election year, but something more sustainable year in year out. Australia has 5 times our population, yet they fund 6.7x the amount of implants we do. In Australia people get two implants as a matter of course - in New Zealand we can't even get funding for one.

I pointed out that this lack of funding is affecting me. Should ACC turn me down, then I take an implant away from someone else on the waiting list, and for this reason, I have to wait for ACC to say Yay or Nay before a decision is made. Obviously it's in the best interests for everyone concerned to get funding from ACC first so if they do say yes, then our waiting list for implants goes to 44. Not for very long though - as at least 30 people go onto the waiting list per year.

My MP Jonathan Coleman is an ex doctor, so he understood what I was saying. I've met him before when my implant was going well, so the meeting for himm was like chalk and cheese - from near normal hearing to hearing nothing at all. He also understood how tiny the cochlea is and about scar tissue.

He has written a letter to the CEO of ACC asking for my case to be investigated as it's taking too long.

Today I heard that a friend of mine who applied for funding to ACC for his failed implant to be explanted/reimplanted, around the same time/or just after me, has had his funding approved already. Whilst I'm so pleased for him, it makes me all the more frustrated with my case and the length of time it's taking.

I'm still waiting.....