It Will Change Your Life #6

November 20, 2019.Reading time 10 minutes.

Thursday, November 7 – MRI & CT Scan

My beautiful daughter, Claire, is driving her beloved mini. I’m sitting beside her, groovy sunglasses on. My shadow, Meniere’s, is bouncing up and down on the seat behind me like a child high on sugar. Anxiety sits beside it, shaking its head at Meniere’s. I smirk at anxiety.

We are on the way to my MRI and CT Scan. Claire volunteered to drive me. She has always loved minis. Her love affair began a long time ago, way before she had her Year 12 formal, four years ago, when we hired a mini convertible for her and a friend to be driven to the formal venue.

Claire has a heart of gold. I often feel guilty that I couldn’t give her and her two brothers a childhood of excitement like I had always dreamed of – Wiggles concerts, other kids’ concerts, rides, play dates, adventures etc. Yet, she has grown into a remarkable young woman, as her two brothers are remarkable young men.

We turn the corner into the X-Ray building carpark.

‘Do you think they’ll find the Meniere’s Monster inside my ear on the scans?’ I ask. My shadow, Meniere’s, stops bouncing up and down and listens.

‘Yes,’ replies Claire, ‘eating cookies!’

I laugh. That’s how we always deal with the cruel Meniere’s disease. With humour. ‘I don’t have Cookie Bite hearing loss anymore, remember, so it can’t be eating the cookies!’ My shadow, Meniere’s, pulls a sad face.

Claire smiles at me. She parks her mini and a mature-aged man smiles at us. He must love minis, too, I think.

Claire is armed with a book to read as she waits for the 40 minute MRI followed by the CT scan.

Today, I have a wandering headache and for once I am glad. I visualise the MRI and CT Scan zapping it to make it go away. I am happy for this next step before the Cochlear Implant, because if there is anything else nasty going on inside my head, it will show up on the tests.

I wait next to Claire. The waiting room is filled with 60, 70, 80 and 90-year-olds. I feel young for once.

‘If you hear my name called, and I don’t, can you tell me, please,’ I say to Claire. She has always been a source of extra ears for me. So thankful.

My name is called, and surprisingly, I hear it. But then, I have no idea where the voice is coming from. This is the problem with one sided hearing loss, you lose all sense of direction of hearing. It is most frustrating.

I stand and look around the room to match the voice to a woman in uniform. After scanning the entire area, I see her, smiling and waiting at double glass doors. I follow her through the doors, my shadow, Meniere’s, follows me with a sassy walk. Anxiety gives him a poke.

After the wardrobe change into the medical attire, I sit and wait. The most interesting thing in the room is the fish tank next to me.

A person appears in front of me, giving me a fright. She approached me from my left side, that’s why I didn’t hear her. I follow her, with my entourage, into the room with the MRI machine. Amazing technology.

Before I came to the appointment, I wondered what the difference was between an MRI and a CT Scan, so I Googled it, and found this interesting image that explains it well.

I lie down, put yellow ear plugs into my ears, and then have earmuffs placed over my ears, to protect my hearing, they say. I chuckle, thinking, I don’t need it for my left ear.

‘You can keep your eyes open or closed, but just don’t move your head,’ I’m told.

Too easy, I think, I’ve had lots of practise at not moving my head. Haven’t I vertigo? My shadow, Meniere’s, nods.

I’m transported inside the MRI machine.

There is nothing but whiteness, except for a picture of fish in their blue water of paradise above me. Well played, I think, giving people something to look at while having an inside picture taken.

A similar image to what was on the ceiling of the MRI – the real image had many more fish.

I close my eyes and wait. My tinnitus is loud. The machine is loud, even through the protection of the ear plugs and earmuffs. But my tinnitus is much louder than both of those. It’s such a show-off, always being the loudest, even a rock concerts.

I can hear music. A little. I open my eyes to try and work out the song. “Welcome to the hotel California”. Apt lyrics, I think, especially the end of the song … You can check out any time you like, But you can never leave!’ Meniere’s – you can never leave. I smile with my eyes. Music mirroring life. I look to the fish and decide to count them. 276.

I try to concentrate on hearing more of the music, but I can’t. My tinnitus is just too loud. Meniere’s, my shadow, is doing the victory dance.

My Meniere’s ear is throbbing, I notice. But not with pain. Is it the earmuff pressure? I shrug in my mind, then imagine the Meniere’s monster taking on different poses for selfies with the MRI. My shadow, Meniere’s, takes a bow.

After 20 minutes, the MRI is finished. I go for my CT scan, which is much quicker.

When I leave the building with Claire she asks, ‘Did you see any cats in the CT scan?’

We climb into Claire’s mini and start her up. My shadow, Meniere’s, is gazing out the window and anxiety has shrunk to the size of a peanut. Next destination, shopping. Claire is an artist and has her final art exhibition for university next week. She has a quest – to find something special to wear.

We stop for a hot drink. I choose a lavender latte. A celebration of my next step towards a Cochlear Implant completed.

The next appointment – the psychologist …

Claire and I – the morning after her Year 12 Formal.
Fun with the hired mini convertible!

About this blog …

My Shadow, Meniere’s, is not just about the physical aspect of a Cochlear Implant – you can research about them online. I am sharing the human side of the journey towards a Cochlear Implant – feelings, appointments, the process, apprehensions, successes, highs and lows as I step into the next chapter of my Meniere’s journey.

I am mindful of those who also have incurable diseases or are walking the path of a diagnosis that is life changing. My blog never aims to undermine the severity of anyone else’s illness, disability or journey. We all deal with life with different tolerances, attitudes and thresholds. ‘My Shadow -Meniere’s’ is my journey. It is my hope that it can help others with Meniere’s disease, or hearing loss, or simply when life has a plot twist.

I also acknowledge those before me, who have already had a Cochlear Implant. Your experiences, advice and suggestions are welcome.

It Will Change Your Life #3

November 12, 2019.Reading time 14 minutes.

Monday morning 28.10.19

Mum and Dad sit on the garden seat waiting for me.

I’m having my Cochlear Implant assessment today. This time I have to drive to the city. Except I can’t drive there by myself with 100% confidence. There’s too much visual movement. I don’t know which direction sound is coming from. Moving my head from side to side makes me nauseous … it’s a vestibular and visual nightmare.

I’m tired when we arrive. Being on high alert and concentrating intensely for an hour is exhausting. But I feel relieved, and sink down into the seat in the reception area at the audiologist.

Soon after, Jane greets me with a smile. The universal language that puts you at ease. Anxiety, tinnitus, deafness, my shadow – Meniere’s, and I follow her to her office. I place my novel, ‘The Colour of Broken’, onto the desk beside me.

Jane tells me she is the Hearing Implant Manager, and a Senior Lecturer at the School of Health and Rehabilitation Science at the University of Queensland. I am in good hands. She is also the one who decides my fate, whether I am a candidate for a Cochlear Implant or not.

She reviews my file, my recent hearing test, and questions me about my history with Meniere’s disease, taking notes as I talk. Then she opens a power-point on the computer. It explains, page by page, the options for hearing devices for one sided hearing loss, like mine: cros hearing aids, and the bone conduction implants – BAHA and Bonebridge, commenting that they aren’t suitable due to the hearing loss in my ‘good’ ear.

She focuses on the Cochlear Implant slides: the what, why, how.

Afterward, words on the screen bounce out at me like they’re in 3D:

‘A cochlear implant can be the extraordinary alternative that CHANGES YOUR LIFE!’

There’s those words again. It will change your life. I keep reading it. I keep hearing those words from others.

Jane hands me the cochlear implant to hold. This is really happening. I heft it. I am surprised by the light weight. She places the outer cochlear components on my head and holds it there so I can feel what it is like. Small steps, I think. This is a method of easing you into the implant, to help with acceptance. Psychology at work.

‘What do you think? Do you still want a cochlear implant?’ she asks.

‘Yes,’ anxiety and I answer. My shadow, Meniere’s, glares at me.

‘What would a cochlear do for you?’ she asks.

I frown. What a weird question. It will help me to hear from my left ear again, obviously, I think. Is this a trick question? After all, she is the person who will decide whether I am a candidate for a cochlear implant or not. My shadow, Meniere’s, laughs at me.

I take a deep breath. ‘It would give other Meniere’s people hope of hearing again. It’s such a horrid, depressing disease. They need to know that a cochlear can help us hear again when they think there is nothing that can be done for hearing … and … I have counselled some people out of suicide. This will give them hope.’

‘That’s a very heavy burden to carry,’ she says.

I frown at her. Burden? I have never considered it a burden.

Jane tilts her head to the side a little. ‘What … would a cochlear implant do for … Julieann?’

And there it is. The question I was avoiding. The question about me.

My eyes sting and tears threaten. Stop.

The question is digging deeper than I want it to. I thought I had boxed away all my emotion to do with MD. This is meant to be my brave, courageous face. My Sunday smile. The one I wear all the time, so people don’t know when I am suffering. I’m a pro at it. My shadow, Meniere’s, chuckles. It’s always there, lurking.

I look out the window at the skyscrapers. How do I answer? What would a cochlear implant do for Julieann – for me? The obvious answer is that I want to be able to hear in my left ear again. Am I being selfish? What does Jane want to hear? What are the magic words she wants me to say?

‘For me?’ I shake my head, not wanting to continue to answer. This question is hurting. ‘I’m always putting myself last …’ I shake my head again. Do I even deserve to hear again with my Meniere’s ear? I think. A psychologist would have a field day with that comment!

Tears. Stop. STOP!

I cover my eyes with my fingers to prevent the waterfall of tears running down my face. I can’t ugly cry. My mum will notice when I finish the session. I don’t want her to know I have been crying…

I take a deep breath and sigh, trying to imagine life of hearing with a cochlear implant … it’s so hard to remember what having two hearing ears was like. I get a brief glimpse of me before Meniere’s disease. Before the shadow of darkness took full, vibrant colour away from my life. I can be re-coloured, right?

I swallow the lump of emotion rising from my chest. I can’t look back at my life. It’s too painful. I need to keep looking forward.

Courage. Breathe.

I look at Jane. Tears trickle.

‘A cochlear would give me a sense of direction of sound, especially with teaching in the classroom and yard duty. It would be a safety issue at school and my non-school life – my husband has saved me three times from being run over by a car … I would be able to go to social gatherings again. I don’t do social events anymore because I can’t hear what is being said, and people get tired of me asking them to repeat what they have said. I smile and nod when I shouldn’t be, and people frown at me. They choose to talk to someone else because I can’t hear them properly. The rejection hurts … really hurts. I now choose not to go out with friends and colleagues because I can’t hear properly.’ The words gush out of me.

‘Good,’ she says. ‘Do you still want a cochlear implant?’

‘Yes,’ I whisper.

‘Let’s do some hearing tests,’ she says.

I’m baffled. I did a thorough hearing test less than a week ago.

Wearing my Phonak cros hearing aids, I sit between two speakers, one near my left ear, the other one on my right. Jane tells me to keep looking forward and not to move me head. Sentences flow out of the speakers that I have to repeat. First with no background noise, and then will background noise on my left and then on my right.

Even with my cros aids on, I don’t have any speech discrimination when background noise is played on my good ear side. I do however get one sentence right – ‘Are you baking chocolate cake for the visitors tonight?’ I feel pleased with myself. My chocoholicism is shining through.

‘You’re very good a keeping your head still,’ she says.

‘I’ve had lots of practice.’ The memory of spinning violently with vertigo comes crashing forward. How many days have a I walked around and not moved my head to stop the nausea, or try to put off a vertigo attack? How many hundreds/thousands of hours have I keep my head perfectly still while spinning?

‘You’re very good at focussing on the words with the background noise playing,’ she says.

‘I’ve had lots of practice,’ I answer, thinking – this is every moment of my awake life.

‘If you are given a cochlear, you have to work at learning to listen with it. It’s not a magical device that’s turned on and suddenly you can hear normally. You must have people around you who will support you.’ She looks at the empty chair in the room. I take the cue and babble on about my husband having to go back to work today after facial surgery, and that my mum and dad are waiting outside for me.

‘Thanks, Julieann. I’ll write up a report about my recommendation for you and send it to your ENT. He will tell you if you are a candidate for the cochlear implant.’

Relief washes over me. I am done. No more tests or questions that are too uncomfortable for me to answer.

I gesture toward my novel. ‘I’d like to give this book to everyone here. It has a main character with Meniere’s disease. I wrote it to raise awareness and to help raise money to find a cure. I’ve donated around $3,200 to Meniere’s Research Fund Incorporated so far. Amelia Grace is my pen name.’

Jane smiles and I sign it –

“The spark of hope can never be extinguished.”

‘I’ll leave it in a place for all patients to be able to read, but I’m going to be the first person to read it!’ She looks at me, her eyes twinkling.

I walk out of the consultation – me and my shadow, Meniere’s. Anxiety is dawdling behind. Jane hands me a yellow folder.

The moment my mum and dad see me, they smile. The universal language that puts you at ease.

Next. Back to my ENT to learn my fate.

About this blog …

I also acknowledge those before me, who have already had a Cochlear Implant. Your experiences, advice and suggestions are welcome.

It Will Change Your Life #2

November 7, 2019.Reading time 12 minutes.

Monday 21.10.19 continued …

My own silence is smothering me. The journey to the Cochlear audiologist in the city is forty minutes long. Forty minutes of staring out the window. Looking but not seeing. Forty minutes of mixed feelings and questions ruminating inside me, alongside anxiety, and the five impossibly loud noises of tinnitus that never leave me. I can never have inner silence. Ever.

I turn my head towards my husband. My ENT shakes his hand each time we visit him, and he fills him with kind words about sticking by me through my Meniere’s journey. ‘Most men would have left their wives by now,’ he says.

I focus on his facial scars from a recent surgery to remove two skin cancers from the bridge of his nose (a Basal cell carcinoma and Squamous cell carcinoma). Sixty-eight stitches. ‘There goes my modelling career,’ he joked with the plastic surgeon. We all laughed. Our fabulous Australian sun loves us too much. At least the cancers are removed now. He’ll get on with this life after this slight hiccup like nothing even happened. It’s not as if he has a debilitating condition that stops him from enjoying life, I think. My stomach drops. I berate myself for not being sympathetic to what he has been through, and guilt hits me like a freight train.

Disappointed with myself, I look back to the road before us, the movement of cars making me nauseous. I hate Meniere’s disease. When will it end? Meniere’s for life. Like a prison sentence. Wherever I go, Meniere’s goes. My shadow, always present. Lurking.

The first thing I see at the hearing centre is a ginormous ear. Yep. I’m at the right place!

An audiologist enters the reception area and calls me to follow him. We go into a soundproof room and he introduces himself and then asks me, ‘Your Meniere’s started in which year?’

‘My left ear,’ I answer.

‘Uh – huh. Which … year … did it start?’ He repeats.

I burst out laughing at my mishearing. Welcome to my life. He doesn’t laugh like me. I’m guessing he has heard it all before. I am having my hearing tested for hear loss after all. Mis-hearing is nothing new to him. ‘It started in 1995,’ I answer in a serious voice.

He asks more general questions, and at the end of his questioning, I say – just for general information, ‘I know that research shows no cause and no cure for Meniere’s, but I believe my Meniere’s is caused by being hit on the side of my head, close to my left ear, by a softball when I was sixteen.’

The audiologist leans back in his chair and folds his arms.

Uh-oh…

He takes a deep breath. ‘Meniere’s disease is an inflammation of the endolymphatic sac and—’

‘I know, in detail, what happens in the inner ear with Meniere’s. I have been researching about it for 24 long years and was invited to the Meniere’s Symposium in Sydney last year (https://healthyhearing.com.au/menieres-disease-research-symposium/) and have heard about and seen images of the physiology of what happens during a vertigo attack.’ I had cut him off. I feel bad. He assumed I had no idea I knew anything about my disease, as one would. He should have asked first. All of us Menierians search for the exact moment that might have changed our lives, and research the disease itself. We talk to each other. We know A LOT of stuff about our disease.

He gives me a nod and says no more on the subject.

I add, ‘I had a hearing test a couple of years ago and it showed that I have cookie bite hearing loss (https://www.hearingdirect.com/au/blog/what-is-cookie-bite-hearing-loss.html ). It’s genetic on my father’s side. That’s why I would like to get a cochlear implant, so at least I have some hearing in the future.’

He gives me a nod again. ‘Okay. Let’s start the hearing test.’

He sets me up with the earphones, beeper, gives me the usual hearing test instructions then sits at his desk of hearing test gear. He gives a negative sigh and I wonder if he likes his job. We begin on my ‘good’ ear first, and I push the button each time I hear a beep, trying to ignore the terribly loud tinnitus in my left ear. Some tones I guess because I don’t know if it is the tinnitus sound or the beep, so I just push the button anyway.

My Meniere’s ear is next. I cannot hear the beginning of the beep at any time, but towards the finish of the testing, at times I hear the end of the beep, I think, so I press the button. I get excited when I can hear some high tones. I can hear! My heart smiles.

The testing continues. By the end, I have sat through these hearing tests:

1. pure tone audiometry, which tests how loud different sounds need to be for you to hear them

2. air conduction, which measures whether you can hear different tones played through headphones

3. bone conduction, which measures how well your cochlea picks up vibrations

4. tympanometry, which isn’t a hearing test, but a check of your eardrum

When the audiologist is finished, I sit in silence and wait on his results, still buzzing from the fact that I could hear some high tones in my Meniere’s ear. It’s a good day 😊

He looks up from the audiometric graph and pulls a face. I interpret it as a good result. I can hear in my Meniere’s ear, when I thought I was profoundly deaf. That’s what he is about to tell me…

‘You don’t have cookie bite hearing loss,’ he says. ‘Your right ear is fine, except you can’t hear the high sounds above our normal hearing range, which people with normal hearing can on our tests. Your Meniere’s ear is what we call, “dead”.’

I am surprised and happy. I don’t have cookie bite hearing loss? How did the testing show cookie bite hearing loss two years ago, but not now? I’ll take it as a win for my good ear.

Then my heart sinks. Weirdly I feel sorry for my left ear. The audiologist called it ‘dead’.

I touch my ear without thinking. Like consoling it. It’s like he has hurt its feelings. I blink.

The audiologist continues, ‘We do cochlear implants for one-sided hearing loss like yours. You have zero speech discrimination, so a cochlear implant will help you. Are you seeing Jane, the cochlear implant assessor, after this test?’

‘No. That’s Monday.’ I nod. Anxiety raises its head.

He gives me a smile. ‘Right. Let’s optimize your cros hearing aids.’

I follow him to another room overlooking the city. He cleans my Phonak Cros hearing aids that I love. I wear two – the left one sends the sound to the right hearing aid, so I can hear sound on my left side. The audiologist tells me the best place for prices to get replacement filters and batteries. Then he places them into my ears, puts an analysing device on my shoulders, and connects it all to the computer. He adds my latest hearing results to the program, and just like that, the computer system optimizes my Cros hearing technology. Brilliant.

I walk out of the audiologist’s rooms happier than I entered. I don’t have the genetic cookie bite hearing loss that affects only the girls on my dad’s side of the family, like my aunty and her three daughters. I’d add a happy skip, but I’d lose my balance and fall over. My shadow, Meniere’s, chuckles at me.

The next appointment – assessment for a cochlear…

About this blog …

It’s not just about the physical aspect of a Cochlear Implant – you can research them online. I am sharing the other side of the journey towards a Cochlear Implant – my feelings, my appointments, the process, apprehensions, successes and failures as I step into the next chapter of my Meniere’s journey.

I am mindful of those who also have incurable diseases or are walking of the path of a diagnosis that is life changing. My blog never aims to undermine the severity of anyone else’s illness, disability or journey. We all deal with life with different tolerances, attitudes and thresholds. ‘My Shadow -Meniere’s’ is my journey. It is my hope that it can help others with Meniere’s disease, or hearing loss.

My Shadow – Meniere's

Category: hearing tests

It Will Change Your Life #3