November 5^th 2019 – the Surgeon.

Life with an invisible illness is an interesting voyage. People cannot see what you are going through, what you suffer- physically, emotionally, psychologically, socially –  your invisible scars – so it’s hard for others to empathize.

People would often say to me, ‘Your life has been so easy. Everything just falls into place. Good things always happen to you. You’re always smiling.’ It used to frustrate me. They had no idea what I was going through. They had no idea I worked hard to be where I was in my career, my family, my three children. Nothing ever “fell into place”. It was earned.

During the hardest time of my Meniere’s disease, I was in very deep and dark depression that I couldn’t climb out of. Yet, I kept smiling. It was easier that way. I would patch up the cracks in my mask before I put it on and met with others. If I could meet others … if my shadow, Meniere’s, hadn’t imprisoned me for five hours of violent, debilitating spinning that would land me in hospital at times.

In hindsight, I’m glad my illness is invisible. It makes it easier to pretend that I am okay. I don’t have people avoiding me like I have a contagious condition. I don’t have people looking at me with well-meaning concern, or that “pity” look. I hate the pity look. I don’t have people devaluing the severity of my symptoms, like:

‘It’s okay, dear, we all get dizzy sometimes.’

‘Oh, I have tinnitus too. It’s so common. When it’s really quiet, I can hear a little “sssssssssss”. You’ll be fine!’

‘My friend had Meniere’s disease – he got a bit faint sometimes. He went to the doctor and is cured.’

Meniere’s disease. No cause. No cure. Yet.

Good things are coming. I know it. I follow the research.

My Cochlear Surgeon is younger than me, as my ENT had said.

I follow the surgeon into his office, my shadow, Meniere’s, behind me, then my husband, and anxiety far behind. The more I know about the Cochlear Implant the less anxious I feel. And I am so thankful to hundreds of people with Cochlear Implants who have reached out to me. The world is a wonderful place.

The surgeon tells me that my ENT believes my Meniere’s disease has “burnt out”.

“Burnt out”. There’s those two words that float around in Meniere’s groups.

According to menieres-disease.co.uk, “the term ‘burn out’ is frequently used to describe Meniere’s as though it is the end of the line, that it has finished. However, it really means that the vertigo attacks have disappeared as the vestibular function has now been destroyed. The disease continues to progress as hearing is completely lost, tinnitus and fullness will continue even after burn out.”

‘Hmmm … I’m not so sure that it has burned out. I still get little mini spins at times,’ I say. And it’s definitely not BPPV.

I am questioned about the history of my Meniere’s, then the surgeon asks me to sit on a stool so he can look inside my ears.     

‘Spin to your left,’ he says.

‘Spin?’ I say with a smirk, referring to the spinning of vertigo, then swivel the chair to the left, slowly.

‘Turn to your left,’ he says, smiling. Ah – he has a sense of humour. Good. He uses the auriscope to look inside my ear canal.

‘Turn … to your right,’ he says with a smile in his voice. I swivel the chair to the right, slowly, and he checks inside my ear canal.

The remainder of the appointment flows with quick succession:

Surgery date: 19 December. Overnight stay. $25, 000 Cochlear Implant cost covered by the health fund. Any questions?

I take a deep breath. ‘Will my vertigo return?’

He considers my question, then says, ‘I don’t expect it to, but there are no guarantees. For Meniere’s patients who still have some balance cells left, I usually wash out the inner ear with gentamicin while I am in there as an insurance that they will not have vertigo anymore, but since you have been so good for quite a while without vertigo, I won’t do that, in case it upsets anything.’

I nod, feeling a little numb. There is still no certainty that my vertigo will not return. How can it be burnt out if the vertigo returns? My shadow, Meniere’s, crosses its arms and grins.

Before I leave, the surgeon gives me a form for an MRI and CT Scan, and tells me I need balance rehabilitation before I have surgery, and to continue afterward. I raise my eyebrows and nod. I have never had balance rehabilitation; I just relearned my balance to walk by myself after the gentamicin was injected into my middle ear in 2004.  

I leave the surgeon’s office. Anxiety is waiting.

Next – MRI and CT SCAN

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.