Monday, January 5, 2009

I'm So Over Being Deaf

I'm seriously no longer coping with this whole deafness issue. I managed to get through Christmas, but New Year totally sucked. I was meant to go up to my brothers place for afternoon tea on New Years Eve, but I couldn't get off the couch and face yet another afternoon sitting around with a plastic smile on my face, understanding nothing, and wishing to go home. Yet staying at home did me no good either. I ended up crying all day.

We're now 5 days into 2009 and I'm still not happy. Although I'm making an effort. I organised a picnic with friends and family yesterday and we sat in the sun in the park at the beach and had a great time. I've invited friends around tonight for a champagne, so I'm not just sitting around doing nothing, although I AM avoiding people as much as I can.

Over christmas the implant became very uncomfortable again, so today, when the implant centre opened after christmas, I went over to see if they could tweak the last remaining electrodes so I can hear comfortably as an aid to lipreading. The result was dismal. One electrode had to be switched off so I'm now down to five, and the others had to be turned right down as they were uncomfortable. The impedance test showed major changes, but Ellen thinks that could be because I'm not wearing the implant as much as I should.

To give you a recap...

In march 2008, not even one year ago, I was reimplanted as my old first implant I had failed. On doing the autopsy, they found a tear in the silicon, so there was fluid ingression, which meant the electrodes couldn't work.

The new implant showed great promise... Take a look at the map just one week post switch on...

From The Ambling Rambler


And you can read about it in the blog I did back in April 2008

I got to that stage, then slowly slowly electrodes had to be switched off and I heard less and less. An x-ray showed that the electrodes had been pulled out of the cochlea. Today? This is what my mapped looked like...



As you can see, the two maps are vastly different, with the first one giving me a very broad specrum of sound with a great dynamic range, to virtually no dynamic range and only a small proportion of sound. With this latest map, I only hear a fraction of what I heard with my first implant, and a fraction of what I first heard with my implant at switch on in 2008. I recognise no sound. Voice is totally muffled. It's now been 18 months since I heard properly.

I am going to be reimplanted. My fate is at the hands of ACC or Accident Compensation Corporation. I have just heard today they are required to get 2 more pieces of information: the advice of an independent CI / ORL surgeon and the legal advisor. They've already had my application for 2 months. I had hoped that they would give me an answer before Christmas. I should have realised that Government Departments only work at one speed - S L O W.

It's enough to drive a girl to chocolate, champagne and icecream. All three I bought on the way home from my mapping session today. If that doesn't cheer me up, then there is no hope!!!

12 comments:

Anonymous said...

Oh dear .... I wish I could be there to cheer you up. Instead bring your champange, chocolates etc down to Blenheim and we'll all help you in your misery, or we'll crack such poor silly jokes you'll soon feel better xx Carold & Co

Anonymous said...

Take the champagne and chocolates to the implant center! Maybe that will entice someone to take action.

You could always come to Kauai, and we'll help you drink and eat and be crazy!

Truth be known...."It ain't butt cancer" so hang in there....you'll eventually wear down the insurance company and get what you deserve!

Larry

Robyn said...

The trouble is that it's not an insurance company, but a government department. The second problem is that I don't really have a lot of time. The longer they sit on the application, the more chance I will have scar tissue, and the less likely a successful outcome. so time is absolutely Crucial.

The implant centre is doing wonders - they rang ACC today on my behalf to hurry them along and to express concern at the length of time it's taking.

Cheers
Robyn

Jennifer said...

Oh, Robyn...ugh :( ((hugs)) I am hoping that things start moving much faster for you soon...two failures in such a short time is SO discouraging! I know how hard the quiet can be...I want you hearing again ASAP! Hang in there!

Carol said...

Have they given you an explanation as to why the electrodes are migrating out of the cochlea? You poor thing - after so many years of successful hearing, to have the last 18 months on your plate is truly shocking.

MKChaikof said...

I'm sorry to hear that medicine in New Zealand is as much of a bureaucratic nightmare as it is in the U.S., albeit in different ways. This is not the way things should be with healthcare. I hope that you get the go ahead for your new CI soon.

Bionic Wombat said...

I am stunned to see the differences between the two mapping sessions - so hang in there and hopefully the new electrode will do wonders

kim said...

(((((((((((Robyn)))))))))
I wish I were there to cheer you up. We could be deaf together. I don't mind writing at all either. It makes me so sad to hear what you're going through. Hugs, Kim

Amy said...

Wow! That is a huge difference. I hope help finds you soon. Amy

Colin said...

Don't hide the champagne and chocolate. Get into them both and go for broke. It may not help your hearing but ACC might decide you need urgent attention.! And don’t give any chocolate to Ellen and Gayle, Last time I did that they turned off more electrodes.

I’d eat all the chocolate and then at least I could blame my headaches on something.

I would be surprised if ACC will have moved beyond holiday and festivity requirements of the department before February though. They will have called an urgent meeting to see how the can levy over indulgence in Christmas dinner and will be analyzing the incidences of chair failure, repetitive strain injury from opening all those presents and back injury following our habit of overloading our front appendages!

Be interesting to see if you get re-implantation approval before me. I think Robert should do mine after yours because he will be much more serious and his thoughts during surgery wont be straying his recent holiday and the fish he has cought.

I look forward to you coming to stay later in the month when the noisy yapping tourists are absent from the local attractions and Christmas euphoria subsides with pending back to school enthusiasm!

Cheers
Colin

Liz said...

Hi Robyn,
I am so sorry to read you are having so much trouble with your reimplantation. That's a really rotten deal! Here's hugs across the big pond... {hug}
Liz

Robyn said...

Yep - pretty rotten - I wait this week to see if anyone is going to do something about it :)