An Emotional Journey to Bilateral Implants | Part VI

It’s been just over a month since Kate’s second surgery, and only 3 weeks since switch-on. She has been putting a lot of effort towards training her new ear!  

How has she been coping in the last few weeks?

Ben & Kate _ 1 month Pre Op Trip NZ

Three weeks since switch-on:

Writing that, I can’t believe it, and it makes me feel better. I was feeling down about it today but then I realise that it has only been 3 weeks since switch on and I’m reminded that it is still early on in the journey. It’s easy to lose perspective when you are living it every day.

I am finding that voices are still very robotic and distorted. While I try to practice listening with just the new ear, I feel like I need to shake something out of my head, gauze… fairy floss… or something crazy like that. It’s as if there is something inside my brain that is not making it crystal clear, but I am so close. It’s very frustrating.

The surgery site has healed up really well however still a little tender. It doesn’t feel quite normal yet I guess but I’ve had no problems at all.

Today as I drove to work, I practised listening to the news on the radio again with just the new ear, and then found it too tiring and slightly upsetting because of how distorted everything seemed. I can’t tell the difference between male and female voices – they all sound deep.

But then music comes on, and it sounds how I remember music, though the lyrics are hard to understand because of the voice distortion. The fact that music sounds normal is the most incredible thing – I am hearing the deep low tones that I was so worried I would miss from my hearing aid. It sounds like the hearing aid, only better. I don’t actually get these low notes in my other CI. It’s like each ear is picking up different elements of things. And it sounds good! Really good! I am so surprised that music sounds great this early on.

I think I’ve come to a turning point – now I can’t really bear to switch off the second CI, even though I am finding it tiring wearing the two together. Location of sound is proving to be interesting. My brain is having trouble believing that it’s hearing out of the other ear properly. So I’ll hear something clearly in my new CI, but my habit is just to turn to the side of the old CI, thinking it’s from that direction. Each day I try to practice listening, and find I am even having to ask my kids which direction things are coming from, and ‘what sound is that?’ – even with the two devices on together.

Last night I had an intensely disturbing dream. I was out bushwalking with my 3 year old daughter Avienne, and we were up on a plateau in the Blue Mountains. I had forgotten to wear my new Cochlear™ implant, so I was only wearing my old one. And suddenly I lost Avi in the bush, I could hear her frightened calls for me, but I couldn’t see her. I told her to stay where she was, and I tried my hardest to find her. I strained my ears listening, trying to find which direction she was, and I just couldn’t. It was getting darker, and I could sense her voice getting further away. I was plunging through the bush, but no matter how hard I tried I just couldn’t tell which direction she was, and I was panicking. The dream ended there, and it was one of those stress dreams that showed that I subconsciously realise that directionality is not a mundane thing, but actually so important.

Arlin_and_Avi_explorers
The explorers: Arlin and Avi

Hearing highlights this week

I’ve made a second phone call through the new CI by itself – to my mum this time! And I could hear her – I had to concentrate so hard but we had a conversation! I was so happy, but when I hung up, instead of the normal elation I’ve been feeling, I felt like something close to tears. It’s such a simple thingto use a telephone. Something most of us take for granted. There was something sad inside when I felt like I was finally able to hear in that ear again, and that I had left it for so long.

On the weekend Ben and I were walking through a busy farmers market, full of people and noise and I heard what I thought was Ben saying, very clearly, “So where are we going?”, and I answered, “I’m not sure, maybe we should go over here to get coffee.” Ben looked at me and said. “I didn’t say anything … I think you overheard that guy over there!” And about 5 metres away, in the middle of this crowd of people, was this guy talking to his family! I had overheard him and it had appeared so close, I thought he was next to me. I don’t think that would have happened with only the one ear.

It was a pretty amazing moment.

 

Views expressed by Cochlear recipients and hearing health providers are those of the individual. Please seek advice from your medical practitioner or health professional about treatments for hearing loss. They will be able to advice on a suitable solution for the hearing loss condition. Outcomes and results may vary. All products should be used only as directed by your medical practitioner or health professional. Not all products are available in all countries. Please contact your local Cochlear representative.

Cochlear, Hear now. And always and elliptical logo are either trademarks or registered trademarks of Cochlear Limited. D1255107 ISS3 AUG17 Cochlear © 2017 All rights reserved.

An Emotional Journey to Bilateral Implants | Part V

Kate finally had her second surgery – so far, so good… She’s going to be switched on. Let’s see how it goes…

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19 June – I am being switched on!

It’s been just 11 days since the surgery, and I’ve now been switched on for 4 days.

The switch on took 2 hours and my family came along – Ben and the kids, mum, my older brother Rohan and his daughter Saskia.

When my audiologist  told me she was ready to switch me on … a rush of blood hit my head, and I felt like I was going to faint. It was about to happen! Oh my god. Everything I’ve been worrying about over the last couple of years is about to be thrown into my head… Right here! Right now!

Then click – “It’s on Kate, how does that feel?”

Everyone looking at me expectantly… and there it was…

A tinkling, hazy mesh of electronica. Scattering through my head.

I can see voices vaguely through a veil of matrix-like cascades of numbers that are sounds. I know they are sounds and words, and voices, but they don’t sound like it.

The audiologist reads to me the “Ling Sounds” and I have to repeat them back. I get the first two wrong, ah and sh… but once I know what they sound like now, I get them right, again and again. Hearing them without seeing her lips. It’s incredible – it’s like I am a baby again, having to relearn to hear completely from scratch…

And then I am handed a mobile phone and told to listen to music. No, this won’t sound good, I think. I choose Nina Simone’s My Baby Just Cares for Me… press play… and there is it…. A song I am so familiar with and…. I CAN HEAR IT! I can hear the beat, the melody, but I can’t understand the lyrics… tears come. I have a cry, even though I promised myself I wouldn’t. It’s like music was the tipping point. Music had been so important to me.

 

Everything is accompanied by a tinkle of three tiny notes at a pitch that I don’t think I’ve heard for many, many years. It’s like everything is sparkling.

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My switch on

I am brought back to the memory of my first switch on, almost 8 years ago – the alien language that I felt I would never decipher. It sounds like how I remember the first switch on!

And how weird that even though I can hear so clearly through my first CI, I am still having so much trouble understanding speech through my second. How incredible that my brain can hear things so differently through each ear, even though the devices are almost identical – and that I can’t benefit from the practice the other had – I still need to ‘re-learn’ to hear in the new ear….

And wow, I am tired. It’s hard work, even passively trying to hear.

I am trying to be gentle and kind to myself, and not expect too much. I knew it would be hard. But it’s like parent-hood. Everyone tells you it will be hard, and you know it will, and then you have a baby and WHAM! Far out, you think. That’s hard.

So what have been the sound ‘highlights’ so far?

I was sitting, reading a book while Arlin my 6 year old was colouring in next to me. There was this delightful sound that just felt like a drink of water to my head – it was Arlin colouring in and the texter tip was making the most beautiful squeaking over the paper. It sounded wonderful. I just sat back and listened to that squeaking for a few seconds.
I said “I can hear you drawing, Arlin! It sounds great.”
And his little face … he’d been so worried about me, and he said: “I’m so glad you can hear it mum!”

the_moment_I_heard_squeaking_texta
The moment I heard the squeaking texter!

And water… Water sounds insane!  Can you imagine Jimi Hendrix playing a guitar solo, lying, sweaty, on the ground, wildly playing three or four notes on the upper scale of his electric guitar, jamming, eyes clamped shut, sweat flying, and he is playing it like it’s life and death, and he’s had way too many drugs…. Well. That’s what water sounds like. Damn! I get a concert every time I wash my hands.

I have mapping sessions every week now to adjust the sound, and I expect this to be a journey of relearning to hear that could take months – and I know it will be worth it.

To be continued…

Views expressed by Cochlear recipients and hearing health providers are those of the individual. Please seek advice from your medical practitioner or health professional about treatments for hearing loss. They will be able to advice on a suitable solution for the hearing loss condition. Outcomes and results may vary. All products should be used only as directed by your medical practitioner or health professional. Not all products are available in all countries. Please contact your local Cochlear representative.

Cochlear, Hear now. And always and elliptical logo are either trademarks or registered trademarks of Cochlear Limited. D1255107 ISS1 JUL17 Cochlear © 2017 All rights reserved.

An Emotional Journey to Bilateral Implants | Part IV

Kate reunited with her Cochlear Volunteer, a bilateral recipient, who reassured her that she was making the right decision.

She cannot wait any longer!

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15 June – Here is what the surgery was like…

So it’s been 8 days since I had the surgery for the 2nd implant. The days have passed in a fog. I’ve been dosed up on painkillers which left me very unsteady and woozy, unable to think straight. But I’ve felt no pain at all. I will be switched on tomorrow!

Wednesday morning was the surgery and this is what it was like…

It had thundered and poured all night, and the rain was still crashing down outside as we drove to the hospital. Traffic was chaos. When we got to the surgical area of the hospital, I had to say goodbye to Ben at the nurses’ desk. We hugged tightly, feeling like it was all happening too quickly.

I was then led into the pre-ward, where all the patients who were about to go into surgery were just lying there nervously, in neat rows, ready to be wheeled into one of the operating theatres. My bed was at the end of the ward. I got dressed in the gown and booties that were provided and lay down on the bed, fidgeting. I started to think “I cannot believe I am actually here, finally, and about to go into surgery”

IMG_20170607_144923
Nervously waiting to go into theatre

I nervously messaged my family from my phone, took a photo, and then my sister called me. I had a quiet and nervous conversation with her, and then suddenly, there was the wardsman appearing beside me, and saying it was time to go!

The wardsman pushed the bed on its wheels, fast, and we glided through the warren of rooms and corridors, feeling like I was going down a rabbit hole, passing people I didn’t know.

Then suddenly we stop gliding, and I am waiting, lying in the trolley bed, covered with a white hospital blanket, facing two big doors as if I am waiting for the beginning of a play or production.

I can hear and see some movement in through the glass porthole window up high… Then suddenly the doors burst open, and   out came a nurse who started asking me the same questions they’ve asked the previous 4 times – name, date of birth, and what procedure are you here for. As I rumble off my answers, she ticks a form, and then looks up brightly and says: “They’re almost ready, won’t be long now.” She puts a cannula in the back of my hand, and then disappears again.

Then the anaesthetist comes through, says hello, and administers a relaxant through the cannula. I am so grateful for this, because I can feel the slight feeling of hysteria rising. I am in control, but as I sit there for longer, each ticking minute makes my muscles more and more jumpy, and my brain flicker more violently.

Soon I am folding back, draping into the blankets and the bed, comforted, quiet, warm and relaxed.

Then suddenly the bed I am on is pushed into the operating theatre and then I am asked to move over to the operating bed, the faces start to blur, I am told they are injecting the anaesthetic, and that’s all I remember. I didn’t even get to count. I’m out!

2 hours later, I awake in the intensive care recovery ward.

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Post surgery

I blink. It’s bright. My cochlear implant processor is on my right hand side, the old ear, so that I can hear – it’s switched on. I am so tired and I feel like I’ve just had the most amazing, deep, blissful sleep…

I am awake now, and … I am alive!  It’s over! …. Thank god!

I look around me at the people in the beds. Each bed seems to have its own nurse, hovering and looking closely at the screens and monitors, not leaving the side of the patient. I have my own nurse too, I realise.

“How are you feeling?” She asks. “I’m okay.” I respond.

I remember last time I had this surgery, almost 8 years ago, I awoke feeling like I was gasping for air, pulling myself out of a sticky bed of sand, unable to breathe. This time was different, I woke gently, more naturally.

I blink again, my eyes feel out of joint, and I can’t focus for long on any object.

I’m given some juice. I can feel my arms and legs start to tremble, I think it’s a response to the anaesthetic. It’s difficult, but I try to calm my body, and manage to stop myself from shaking too much.

After 30 minutes, I am wheeled into my bed in the ward, I am sharing a room with another patient, Dawn, a woman in her 60s or 70s who has just received her first cochlear implant. The hospital ward is apparently full today!

I lie there, finally still, and feeling very tired and weighted down.

Then Ben comes in with a huge smile on his face, and gives me a hug. We are both so relieved that it’s all over.

Now I can feel my head. I lie gently, not touching anything, just feeling what I can feel.

There it is. Inside my head, near my ear. I can feel it.

A gentle ache. It’s done.

Now the next part of the journey can begin… Stay tuned!

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Views expressed by Cochlear recipients and hearing health providers are those of the individual. Please seek advice from your medical practitioner or health professional about treatments for hearing loss. They will be able to advice on a suitable solution for the hearing loss condition. Outcomes and results may vary. All products should be used only as directed by your medical practitioner or health professional. Not all products are available in all countries. Please contact your local Cochlear representative.

Cochlear, Hear now. And always and elliptical logo are either trademarks or registered trademarks of Cochlear Limited. D1255107 ISS1 JUL17 Cochlear © 2017 All rights reserved.

An Emotional Journey to Bilateral Implants | Part III

Kate met with her surgeon and asked many, many questions! Then again… who wouldn’t? She is now booked in for her surgery… Did she make the right decision?

P1240056

29 May – Am I making the right decision?

So it feels weird to say this…. I am getting my second cochlear implant NEXT WEEK!!

On Saturday night, I went to a music concert with my husband Ben, to see his favourite band, The Avalanches. They played outside the Opera House, in the open air on a beautiful still night, with the VIVID festival of lights shimmering over the harbour in the background.

last_music_concert_before_surgery
Last music concert before surgery

For some reason I felt apprehensive. As we walked to the venue I was telling Ben how I was worried that this might be the last time I hear this music the way I know it. Even though I can’t understand speech from the hearing aid, I can hear music through it, and it is the last vestige of my natural hearing, even though it’s amplified to the point of jangling my ear canal with so much vibration it literally moves.

As the music began, I tested out variations. Hearing aid off, Cochlear Implant on; Cochlear Implant off, Hearing aid on; both on together. It was definitely better with both on. With just the cochlear implant I could hear the melody and beat better, but with the hearing aid, it added this deep thumping richness… What am I doing? I thought to myself. I have no idea what it’s going to sound like with two cochlear implants… Am I making the right decision?

And then I stood with both of them switched off, the silence suddenly deafening yet the beat obviously pulsating, because I could feel my rib cage vibrating. And yet silence, surrounded by movement. It’s a beautiful and lonely thing. To be still and silent amidst movement and chaos.

And then I remember that I had not heard properly out of that ear since I was about 11 years old… 25 years! I realise the long road ahead. How to train an ear that hasn’t heard clear sound for 25 years.

KAte & Jennie
With my mentor Jennie

I met up with a Cochlear Volunteer mentor/buddy last week.  It was the same one I met 8 years ago when I first decided to get the first implant, and she is the one that has convinced me to get the second.

We met in a café, we hugged and looked at each other, and I said:
“I am doing it!”
“I am so glad you’ve come to this decision yourself, because I was about to ring you to hassle you about it!”, she responded

She told me about the switch on of her second one, how it was like a vacuum cleaner sound in her ear for several days after, and how she flung it off in frustration after the first day. I am going to have to be mentally strong for this one! So much expectation.

I asked if she really felt it was worth it. “Yes. I don’t like to be without the second one now. Sometimes I will listen to the podcasts on the other ear, the second ear,” she responded.

Sounds simple, but this comment had the same impact as me watching her on the phone that first time 8 years ago. You see, we’re always told you won’t hear as well with the 2nd ear… I don’t really expect to hear speech as well in that ear…

With the first CI, I was amazed that she could hear on the phone. Now I am amazed that she can actually hear speech through her 2nd CI, well enough to listen to a podcast.

I want to have that incredible clear sound in two ears. I just don’t want to wait anymore.

I am anxious… but excited.

I will keep you posted……

Kate.


Views expressed by Cochlear recipients and hearing health providers are those of the individual. Please seek advice from your medical practitioner or health professional about treatments for hearing loss. They will be able to advice on a suitable solution for the hearing loss condition. Outcomes and results may vary. All products should be used only as directed by your medical practitioner or health professional. Not all products are available in all countries. Please contact your local Cochlear representative.

Cochlear, Hear now. And always and elliptical logo are either trademarks or registered trademarks of Cochlear Limited. D1255107 ISS1 JUL17 Cochlear © 2017 All rights reserved.

 

An Emotional Journey to Bilateral Implants | Part II

 

 

 

Kate O 2016

Kate recently decided to go ahead with her second Cochlear implant – after putting it off for 6 years. She feels slightly drained, sad and quiet. She didn’t expect this journey to be so emotional… Fast forward to March 6th and she is now sitting with her surgeon. Will she book an appointment?

6 March 2017: So many questions, so little time!!! 

Kate CT scan
Having my CT scan done

So today I took my CT scans to my surgeon.

 

I took my 6 year old son (sick day), and 71-year-old mother, who is considering getting a cochlear implant along for the ride. Mum is experiencing moderate age-related hearing loss and finds her hearing aids are not quite enough, especially in noisy situations. I hear better than her… and I am profoundly deaf!

 

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At home with my 6-year-old Arlin

In the appointment, Professor da Cruz was intrigued why I waited so long to get the second ear implanted – I had forgotten I did an assessment for the second ear nearly 6 years ago!

My reasons?  Too busy, not quite ready, thought I was ok with just one ear, fear of surgery.

I asked A LOT of questions, even though I had been through it all before.

  • How long does it the surgery take? Mine would be just over an hour.
  • What about healing? A day in hospital; a week feeling a bit out of it.
  • How many surgeries has he done? He’s done 500 CI surgeries now.
  • He explained his choice of implant and why he’s selected that particular option. He explained CochlearTM implants were easy to insert, and that the technology was incredibly reliable, and that Cochlear’s main point of difference was the accessories and connectivity of the processor.
  • The cause of my deafness? It’s unlikely my hearing loss has been caused by the Enlarged Vestibular Aqueduct Syndrome (something I’ve been told could be the issue for the last 20 years), as the vestibulars weren’t enlarged. Still no idea what has caused it.
  • Head looks normal, and cochlea shaped well for the electrode. Tick.
  • He told me I was a rare age in his clinic – most of his patients are between the ages of 12 months -2 years, and 70-90 years old. Apparently the thirties is very rare.
  • Hmmm. When is the appointment? He tried to book me in for next week!!!!
    WHOA NELLY! Too fast!!

I am officially booked in for Wednesday 7th June!

And now I am worried that it’s too far away! Who would have thought?

OK – now I need to focus on sorting out  private health insurance to ensure it’s all covered. I am also getting an NDIS (National Disability Insurance Scheme) planner to assess my situation to see if they can cover Wireless Accessories for me. I am intrigued as to how much will eventually be covered.

I am feeling a lot better about the decision. It helped that the surgeon really understood how I was feeling.
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And when we got out, my son looked at me and said:

“Mum … does this mean you’ll have two computers in your head?” …

“Hmmm… Kind of, I guess…” , I answered
He just looked at me quietly, nodding.

“Cooooool”, he replied.

 

Stay tuned for Part III …

 

 

Views expressed by Cochlear recipients and hearing health providers are those of the individual. Please seek advice from your medical practitioner or health professional about treatments for hearing loss. They will be able to advice on a suitable solution for the hearing loss condition. Outcomes and results may vary. All products should be used only as directed by your medical practitioner or health professional. Not all products are available in all countries. Please contact your local Cochlear representative.

Cochlear, Hear now. And always and elliptical logo are either trademarks or registered trademarks of Cochlear Limited. D1255107 ISS1 JUL17 Cochlear © 2017 All rights reserved.

An Emotional Journey to Bilateral Implants | Part I

Kate is a Cochlear employee and received her first cochlear implant in 2009. She recently decided to go ahead with the second surgery. Why? Because she wanted to hear her children better, be less tired by the end of the day from listening and because the first implant was so incredible and life-changing. The journey was an emotional one and she decided to share it with us, to explain the challenges people may face when deciding to go ahead with their second cochlear implant surgery. This is her journal.

Kate O 2016

23 February 2017: OK, I’m doing this!

So I’ve been considering a second cochlear implant for many years now.

I should be leaping at this thought, like nothing holding me back…. But that’s not the case.

It was only last year – the year my son Arlin started kindergarten – that I realised I was missing words, and finding it hard to hear with just one implanted ear.

I had booked in my CT scan last year (first step before embarking on 2nd CI journey), then cancelled it, because I wasn’t ready. I would do it when things calmed down.
But would they ever calm down?

So I just had it done, lunchtime today – x-ray of the head. This is to check to see that my inner ear is okay, and there are no obstructions to receiving my second implant.

When I got back to work, I snuck a sneaky look at the x-rays in the light at my desk…. And it brought back a flood of memories of that first day in the hospital 7 years ago, after I had my first CI surgery; lying in the bed, head bandaged up; my then-boyfriend (now husband) sitting near me, intrigued by the x-rays. He held them up to the light, and I remember felt slightly sick as I saw the outline of the implant against the side of my skull. It had really happened.

How do I feel today?
Slightly drained, sad and quiet. I am realising I’m about to embark on the same journey I took over 7 years ago. And I’m surprised it’s still an emotional one. I feel like I am going to cry, and I feel like I need a hug.

Why? Well, I am surprised too. I don’t want to have surgery. I don’t want to have to spend time recovering, and be tired for weeks and weeks while I get used to new sounds. I don’t want to have to wait for 2-3 weeks after surgery not hearing anything at all out of that ear, only to maybe find out that it sounds like a vacuum cleaner constantly switched on in my ear, as a recipient once described it to me...

It’s entirely possible I won’t hear well in that deaf ear, ever. It’s a leap of faith, and an unknown. I am a little bit afraid.

I know, deep down, it will be okay. It’s just the enormity of this first step. I realise that even though I am sharing with my family and friends about what I am planning on doing, I am really on my own with this. No one will be able to hear what I am hearing, except me. No one else will know how tired I am at the end of the day, except me. No one else will be able to really understand that anxiety and worry about whether or not I’ll ever hear out of that ear again, except me. There will be supporters all around me, but really it’s going to be up to me how I deal with this, and no one else.

I feel it will take some time to be ready to go on this journey again. From the outside in, it seems so simple. It works. Just get the tests, have the surgery, switch it on. Bam. Done. Good. Great.

But I know that humans are not simple, and neither is this journey.

Writing this is helping me to grapple with all the emotions I have– and helping me to build courage to embark on what I know will be yet another life-changing chapter in my life.

To be continued…

 

Please seek advice from your medical practitioner or health professional about treatments for hearing loss. They will be able to  advise on a suitable solution for the hearing loss condition. All products should be used only as directed by your medical practitioner or health professional. Not all products are available in all countries. Please contact your local Cochlear representatives.

Cochlear, Hear now. And always and elliptical logo are either trademarks or registered trademarks of Cochlear Limited. D1255107 ISS1 JUL17 Cochlear © 2017 All rights reserved.