A Hearing Loss & Late Deafened Blog

Cochlear Implant Frustrations by Robyn Carter

In audiogram, Cochlear Implants, Deafness, Hearing aids, Hearing Loss on January 6, 2009 at 8:58 pm

 

It’s now official. I have just been diagnosed with depression for the first time in my life. Simply because of the frustration I’m having with lack of hearing, and lack of action in terms of ACC funding my new implant. 

ACC is our Accident Compensation Corporation.  When you have an accident in New Zealand, ACC covers the cost of any medical need you may have to treat injuries caused from that accident.  Normally, my hearing is covered under the District Health Board funding, as my hearing loss isn’t caused by an accident.  However, when the electrodes from my implant migrated out of the cochlea after surgery, rendering me profoundly deaf once more, this is termed a medical injury and is covered under ACC.

The hearing loss I’m dealing with is huge compared to when my original implant was up and working properly. I haven’t really heard properly except for a very brief window in 2008, for 18 months…. Going on 19 months but who’s counting?

Two months ago, when an x-ray was taken, we finally discovered that the electrodes had moved and so we applied for funding from ACC.  I checked with them just before Christmas hoping I’d have an answer then – but it wasn’t to be.  I was severely disappointed but they told me that they would have an answer early New Year.

ACC sent me a email yesterday (6th Jan) apologizing for the delay, explaining that it was a very ‘complex’ case, and they’ve now been advised to get an outside ‘independent’ opinion, so they have sent my case notes to Christchurch in the South Island to an ‘independent Cochlear Implant surgeon’. This is quite laughable as we’re not exactly a BIG country, and the implant surgeons in NZ is a very small club (boys network!!)

As for complex – I think they’re making it more complex than it needs to be. The electrodes have come out of the cochlea. They need to be put back in, maybe with new electrodes. What is complex about that?

They’ve given the surgeon 4 weeks to complete his report, and then it goes to their legal team which could be another 4 weeks. So I’m going to be profoundly/totally deaf for at least another 2 months.

Yes I’ve written to ACC and explained my case and displeasure of waiting so long – they’ve apologized but said there’s nothing they can do. I *can* go ahead with the surgery, pay for it myself, and they’ll reimburse me IF they accept the claim. That’s fine and dandy if I had some spare change in my pocket to the tune for $30k – but I don’t, and I resent the fact they think I might have!

I guess it’s because I’m the first person in NZ where electrodes have migrated out of the cochlear, so there’s some research for them to do, and some I dotting and t crossing! But in the process, they’ve forgotten that there’s a real person out there, struggling to cope with day to day hearing and living because of it.

My doc has put me on a low dose anti depressant. She’s been my doc since I was 17, and said it was admirable how I’ve overcome many struggles throughout my life, and that my mood has always been stable and happy. But it looks like this is one thing too much. She’s also concerned how I might feel if the operation doesn’t work, so hopefully by then the pills will be working and will help me through that process should the worse happen. Naturally, once things start moving and I get a date, I’ll probably be much happier, and if the switch on goes well and I hear again, then I can be weaned off the pills.

I took my first one this morning. I hate taking pills, but I have been warned that depression can spiral down further if not treated. I know I feel this way because I have no control over what is happening to me, and the doctor says that’s one of the main causes of depression – lack of control over things that are happening in your life.

A friend asked me to make sure I remember all the things I’m grateful for – so I’ll list some of them here.

I’m grateful for friends and family and their support

I’m grateful for the support I can get from SWC

I’m grateful for my bra because they stop me from tripping up over my boobs when knock against my knees, and stop me from getting black eyes when I’m out running!

I’m grateful for my fantastic implant team even though they can’t do a lot for me right now!

I’m grateful I still have a sense of humour even when I feel so sad.

I’m grateful for my cats who give my unconditional kisses, particularly when I’m whistling or singing!!! (Yep they’re actually trying to shut me up)

There – Now I’ll go and eat some more ice cream and chocolate.

by robyn carter in New Zealand

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  1. Hi Robyn,

    You’ve had a lot of “complexity” to deal with yourself. Your doctor seems to understand the emotional roller coaster you’ve been on recently. Yes, an anti-depressant is just a band-aid, but it keeps you from going under and going thru a prolonged depression, which is more difficult to recover from.

    It is unfortunate that red tape gets bogged down and you have little time to lose, it happens in a lot of places, including here in USA. I keep my fingers crossed for ya, girl, just keep going on with what you’ve always been doing, your passion in photography, running, visiting with family and friends, etc.

    So what, you’re hitting a wall at this time in your life. An implant going awry is not the end of the world, not going to stop you from doing the things you want to do and not going to change the wonderful, warm personality you’ve always been, unless you allow it.

    If there ever was a time to turn your charm, this is the time, girl.

  2. I realise the implant going awry is not the end of the world – it’s just so damn heard to hear right now, and I’m grieving for the loss of hearing that I once had. This is the deafest I’ve ever been, and there’s a very real chance that the impant operation won’t work this time around, so add that to worry, it’s just another brick being thrown at me.

    Cheer
    Robyn

  3. Hi Robyn

    Here are 2 people you need to know about first one is
    Dr Jeanine Doherty
    Doctor of Audiology
    Hearing Aid and Audiology Clinic
    235 Bealey Ave
    St Albans
    Christchurch
    New Zealand
    8001
    Jeanine.Doherty@xtra.co.nz

    And 2nd

    Peter Sara
    Lawyer
    5th Flr,
    10 George St
    Octagon
    Dunedin
    PO Box 5995
    Moray Place
    Dunedin
    Phone 0-3-477-8594
    Facsimile 0-3-477-2512
    Email peter@mvl.co.nz
    Both of these people have Significant competence in dealing with ACC matters

    We wish you all the best but please dont sit around a wait for that letter from ACC get in touch with both Jeanine and Peter now if ACC know you have a lawyer onboard your answer could be a good one some how please let us know what happens and if we can help in anyway please let us know.

  4. Angela, you don’t mention what agency you are from or who u are affiliated with? Your the miracle mystery woman out to help Robyn….I’m impressed and grateful
    Pearl
    NYC

  5. Hi Robyn,

    I can totally sympathise with you over your experience with ACC. All I can reiterate is keep on them – hard as it is – and do send Peter Sara an email about your situation. You can mention me, Denise from Acclaim Otago if you like. He works with many of our members. We are a volunteer support group for people with ACC issues. You can check out our websire on http://www.acclaimotago.org or send me an email acclaimotago@gmail.com and I can discuss further with you if you like.
    All the very very best,
    Denise Powell
    Dunedin NZ

  6. dear Robyn,
    Don’t quit. Life is a challange at time, and we are all tested for some reason. I am struggling to make sales and feel depressed at times also. A fellow cochlear implant user.

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