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The Million Dollar ear

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Written by keller 11. May 2008 06:06 PM

The Million Dollar ear.

I was asked about the history of my ear troubles and here it is.
Around 3 years ago nearly a year after my eyesight failure commenced I was referred to an ENT (ears nose throat) surgeon by my Ophthalmologist (eye Dr) because a head X Ray showed some signs of sinusitis.

I went to see the ENT and he spoke to me for a while and then looked in my ears. I told him I had a history of Glue Ear as a child (10 operations between the age of 5 and 12). He looked in my left ear and asked me a few things but said it was OK.

He looked in my right ear, then looked some more, then put a suction thing in there and looked again. Felt my skull around my ear. He then said I would like you to go for an MRI. And I said what on earth for? He said I appeared to have a serious infection in my ear that was probably venturing into my skull. I was shocked to say the least very shocked. He then informed me that if his diagnosis was confirmed by the MRI I would need to have surgery straight away. My tears came slowly. I asked him how bad this was and he said, until he had all the facts he would not know, at its best a severe ear infection requiring hospital stay and drip antibiotics. And I said. At its worst major surgery.

I had the MRI there and then and the results were given to specialist within an hour. It was the worst side of the scenario. My Dr then contacted another surgeon who specializes in all this staff, facial maxillio surgeon who is also trained in ENT and plastic surgery. I was sent by ambulance to see him, it was about 5.30 in the afternoon.

I spoke to hubby and my sister who came to look after the kids, hubby arrived 15 mins after ambulance. I saw the wonderful Dr who would come to be a great support to me over the next 18 months.

It was discussed and planned for 730 the following morning. Apparently he had to cut to the back of my ear to get to the skull and then cut away the infected bone and see if it had come through to the brain lining. It hadn’t. He took a piece of my skull about a 50cent piece size out to clear all the infected area. He then cleared all the remains of my ear out and had to reconstruct it out of left over uninfected materials of which there were not too many. He tried as best he could to give me hearing, he gave me a little. He knew as my cochlear was so badly damaged that I was not a good candidate for hearing aids he did give a small degree of sound conductivity which I can now to some extent magnify.

The surgery went for 6 hours, my hubby and my friends and family still in shock at all its suddenness. A week in intensive care knocked out for first few days then gradually brought back, another 3 weeks in hospital. I was a wreck a blind and half deaf wreck. I needed a lot of assistance because my balance centre was shot to pieces and I had to relearn this, being blind is not a help for this.

So now, well it looks lie I may have some of this back, and I am not at all inspired or impressed, I cannot imagine it being as bad as last time but it may well screw any conductivity out of my ear at all, that will mean total deafness, relearning to balance, relearning to make my way around , probably never going out on my own again. Without bilateral hearing I cannot work out which direction noise is coming from so I will not be able to cross roads, follow traffic indicators etc. Fucked again.

So that is the story. I can not believe it.

And why the million dollar ear? Well my surgery alone cost about 27,000 and the first 2300 covered by Medicare and another 3 covered by private insurance, plus the hospital stay, plus all the rehab, plus the balance centre. Plus all the lost income for me and hubby. Plus the hearing aids. It was all a shit load of money.

So now I wait and see the specialists specialist I call him because that is who the ENT specialists refer to. Back to St Vincent’s and another merry go round. Who knows what.

I have been thinking a lot about sympathy and of telling more people about what’s going on but I cant just yet, I need to get the facts, need to see if it is worth stressing about…I am just hanging on right now.


Keller
XXX

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Comments from the community:

Liz, I nearly cried when I read this story. I can't imagine what you must be going through - the thought of being being deaf and blind, I can't comprehend it. I can't comprehend how horrible and traumatic the whole event must have been for you.

I hope that everything goes OK with the specialist's specialist, you deserve for something to go right for you - you are such a wonderful person and it is so unfair that this is happening.

Best of luck and lots of love,
Barbara

Written by babz, 11. May 2008 06:15 PM

Liz,

I wish i knew what to say.

I hope everything goes alright with the ENT specialist.

I am thinking of you.

Love,
WD

Written by WhiteDove, 11. May 2008 06:55 PM

Lizzie,
Thanks for filling in the gaps for me, excuse me while I rug up coz Ive got goose bumps from reading this diary, you didnt have to answer my question, it must've been quite traumatic to relive it all and I thank you again.

It sucks that your going through all this again, I guess you and me make a great pair hey, just one medical drama after another!

Hey I took my dressing off my incision today and I wasnt too happy with the result, I gotta say... I called Ash into the bathroom to show her and she just laughed at me!
She held her hands up about two inches apart and said "but Mum, there's that much difference in your boobs!"... Slight exageration but yeah, one is a good inch lower than the other, and yeah, its kinda noticable to wear a bra..... bumma hey?

Anyhows, I told you I had an idea why you were feeling the way you were but I wanted to know the history of your ear first... only prob is now I cant remember what you wrote on your other post so I'll go read that and be back! lol

But you know something? The more I learn about you, the more I admire you! Yeah your going through hell and it sure wears pretty damn thin, but your still fighting..... even if you ARE hanging on by a thread... your still hanging in there hun and never, not ONCE have you asked for any sympathy.... understanding yes, but sympathy no.

Love you hun
Tan
xxx

Written by Gyps, 11. May 2008 07:34 PM




Keller,
We havent spoken much, but I want you to know that I think you are one hell of a gutsy lady.My goodness, you have had so much to deal with yet you can write it all here and let us know how youre doing so far.
My best wishes and thoughts are with you through the rest of this ordeal. You are a terrific woman so hang in there.

Love lesley xx

Written by lesleyk, 11. May 2008 07:46 PM

hi Tan no worries about writing it down sort of cathartic and something i can show to those who want to know, all the detail anyway.
The noise inside my head is awful probably the worst thing of all, sounds like a motor bike, a small one you know a 125cc pissing me off no end, worse at bed so i go to sleep listening to a book in my headphones
shit,

anyway catch you soon hope your boob is getting there

take care

Liz

Written by keller, 11. May 2008 07:48 PM

Oh keller, what a heroine you are, to go through all of that and still be able to make positive comments on other peoples diary entries. I think you are absolutely fantastic. The obstacles you have overcome are something that ordinary people like me would just not be able to jump over.

Well done keller - as Les said, you're one gutsy lady.

Just wanted to send you my warmest wishes for good news on Monday. I will be thinking of you all day.

All the best,

Fly xxx

Written by fly, 11. May 2008 09:02 PM

Keller

This had me in tears again. I cannot imagine you copping with hearing loss and sight loss. You are a real hero. Good luck with your wonderful specialist.

Go Keller!!!

Mrs Studying1

Written by studying1, 11. May 2008 09:21 PM

Hi Liz,

Thank you for your comment to my diary entry "heart of stone". Yes I do suffer from depression and have done for years, and used alcohol to self medicate. I am now on 300mg Effexor XR anti-depressant and have a great team around me in my husband, GP, psychologist and psychiatrist.

I guess the medication could be dampening down my emotions and it's just that I'm noticing it now I'm not drinking... used to be a naughty girl and take them and drink anyway, which would probably render them useless. As long as I can still feel love from my children and my husband, that's the only emotion I need at the moment I guess.

I'll be right and thanks again for your comment. Hope all is going well with your round of specialists and am looking forward to reading a resoundingly positive diary entry from you with all good news. That's what I'm wishing on the stars for you at the moment anyway.

Thanks again Liz,

Karen xxx

Written by fly, 14. May 2008 06:24 PM