Friday, February 8, 2008

Deafness Sucks - I'm being Reimplanted!!

Being profoundly deaf totally sucks in my opinion. I’m forever straining to hear what people are trying to say, which makes me really tired. I’m an excellent lipreader, but even then, I miss a lot. The importance of being able to hear was really brought home to me last week when I was in hospital too sick to open my eyes to even lipread. I personally wouldn’t wish deafness on anyone.

Yes – sign would be good – if the rest of the world signed with you, but let’s face it, only a small proportion of the hearing population bothers to learn sign, and I don’t think it’ll ever be made compulsory in schools for everyone to learn as a universal language. I want to be able to talk to anyone, anywhere, anytime, without that confused wild look in my eye, without such intense concentration, and without having to curse those background noises threatening to drown out the last vestiges of sound I have.

I want to hear the birds again – not only hear them but recognise their calls like I could do just 8 months ago. The dinstinctive song of the Tui, the chatter of the fantails, and the peeps of the white-eyes. And the odd call of the Kingfisher.

I don’t want to sell my piano – something that is very near and dear to me.

I want to be able to listen to my ipod again while out running. Did you know running without music is really hard. With music I can run for miles without even thinking, without, I’m lucky to get 1km without having to give up, desperately trying to suck air into my lungs! (Please remind me why we have to exercise!!)

I want to hear the click of my camera when it takes the perfect image.

I want to hear when my car needs a gear change. My daughter reminded me the other day that I was still in 4th gear and I should be in 5th . Yeah yeah – not a biggie but I have caught myself in 3rd gear before when I should be in 4th – never heard the engine scream!

I want to hear my cats purr again. At the moment they are just vibrating machines without sound. And I can’t hear them talk either. Most people think that’s a blessing as my Burmese are very talkative – but to me they just open their mouths and shut them again. It’s really hard to lipread them!!

With all this in mind, I met my ENT surgeon yesterday and we discussed the pros and cons of reimplantation. The very very worst thing that can happen, is they take the old one out, and cannot get another one in. And then I’d be totally deaf again. Forever. Never to hear again. If that happens, someone can let me off at the top of the harbor bridge and give me a gentle shove!! However, that risk is low and unlikely to happen, I just to have to be aware that it ‘might’.

Auckland Harbour Bridge.

So if they do get the new one in, at worst, they will only be able to get 10-12 electrodes threaded. However, that will still give me more hearing than I have now, with 8 electrodes working, but not optimally. At best – they’ll be able to get the full set of electrodes in and I’ll be back to where I was before in no time. If that happens, I will never whinge again about anything, in my life, ever again. (Make sure my brother doesn’t read that as he has that personality type that will remind me I wrote this for the rest of my life!)

My choice was that I could muddle along as I have been doing for the last month, or go ahead with a reimplantation. With known risks – it’s a hard decision to make. One minute I’m wildly against even touching what I still have, and hating the thought of another operation. Then I miss out on something important, and with tears of frustration decide on the spur of the moment that I will go ahead. So – after discussing everything with my daughter, and writing heaps of notes of positives in column A and negatives in column B. There are 57 lines of text in Column A and just two in Column B. 57 to 2. Positive wins – and I emailed my specialist this morning to say – Yep – set everything in concrete I’m going ahead.

I haven’t had any second thoughts yet, and it’s now been 6 hours since I made the decision. That’s pretty good for me!

I will hear next week when the surgery will be. It’ll either be sometime in the next two months, or sometime this year, depending on the trust and funding. I will be getting Cochlear Corp's new Freedom implant.

Watch this space…

13 comments:

Bron said...

Your cats are saying they want to glomp on you.....

That's good news you still have the chance to get your hearing back.

What is a Freedom implant?

Robyn said...

The Freedom Implant is the very latest technology from Cochlear Corp. I have a dummy one in my CAN (Cochlear Awareness Advocacy) kit if you want to see it. I can even show you the electrode part as I have a mockup of that.

Has a few more bells and whistles than the current 3G N22 of my old technology :)

Cheers
Robyn

kw said...

Sounds like you've thought it through. I can't think of anything for you negative list. seems you have nothing to lose and everything to gain. if you hadn't already successfully worn one then i suppose there would be that to consider. . .but we know you can do it. So go for it!!

Karen Mayes said...

I enjoyed reading your blog... the audiologist warned me that I might not be a candidate from CI because I receive good benefits from my hearing aids (I can hear birds chirping, airplanes, leaves crunching under my feet, etc...) And yeah, I have low speech recognition. Well, if my hearing takes a nose dive, I will re-consider the CIs...

But my son has a progressive hearing loss and his digital hearing aid's programming are at max, soooooo... he expressed an interest and we are keeping an eye on it now.

moi said...

Hi,

It does sound like this has been a very frustrating experience for you! I want to gently remind you (and maybe some of your readers, including hearing parents), though, that not everyone feels the way you do about being deaf. I love being deaf in so many ways. I love feeling my cats purr, I drive a stick by feeling when I need to shift up, and so forth. These ways of doing things are different from the way most of the world does them, true, but they are a perfectly valid part of the human experience.

I don't mean to discount your experiences. You're frustrated because you're experiencing a loss and your way of doing things has had to change significantly. I can empathize. I genuinely wish you the very best of luck with your surgery and I hope you fund what you are seeking.

Paula Rosenthal said...

Good luck! Any idea when you'll have the surgery? How long has it been since the other one failed? Be sure to have some kind of auditory therapy lined up for right after activation.

K.L. said...

It sounds like your cochlea is ossified. Forgive me if I missed something, but is this why they may not be able to get a good reimplantation?

My daughter got her N24 inserted into her left cochlea when they found that her right one had already ossified. It was successful, but they surmise that her left cochlea is now probably ossified around the implant. I've always wondered how that would affect future reimplantation if this one quit working.

Robyn said...

Hi Karen,

The importnat thing for Cochlear Implant use is speech. If you have poor speech discrimination with your aids, despite ohter sounds you can hear, you will most likely be a candidate. Because it's all about speech recognition. If you're in doubt, just get a referal to an implant team and be tested properly.

Cheers
Robyn

Robyn said...

Hi Moi,

I realise other people have positive experiences with being deaf, but I'm not one of them. I was born with a mild loss which gradually got worse. If I went totally deaf tomorrow - athough I would grieve I would cope, but I prefer sound over deafness.

Cheers
Robyn

Robyn said...

Hi Paula,

It's been about 8 months since my existing one stopped working properly.

Our implat team is great with a good rehabilitation team :)

Cheers
Robyn

Robyn said...

Hi K.L

No Ossification is not the problem in my cases.

About 4 years ago i had a partial labrynthectomy on my Cochlear Implant side. The surgeon was very 'gentle' with it to cause minimal effect to the CI. And it was a good way away from the CI Site. However, until he takes the old one out, he won't know if any scar tisssue has migrated to the cochlear. He's hoping it won't have, but as he said - you never know!

Cheers
Robyn

Rachel said...

Robyn,

I'm very delighted to hear that you made the decision to be reimplanted. I can completely understand your frustrations as I went through it a few years ago. If the surgery goes well, I can certainly tell you that you will have great positive outcomes with your new CI. For example, with my Nucleus 24, music sounds much richer and sharper than when I had Nucleus 22. Basically, I am able to hear certain tunes that I was not able to hear when I had Nucleus 22. One thing that you need to be aware is that when you hear again for the first time, have low expectations in your hearing quality because it will take about 6 to 10 months to really be back to the same hearing quality as you were with your old implant before it failed. Not only because you're receiving a newer technology, but also because the electrodes are placed differently in the cochlea. I wish you the best of luck with your reimplantation process, and if you have any questions or need to talk to someone, I'm here!

Anonymous said...

Missed you on our marathon walk at Woodhill yesterday but glad to hear that you are getting the implant. Hope all goes well and we see you soon. Jackie