Nikki Heywood: Have you ever heard of Cholosteatoma? Read about my hospital visit and find out what it is

Posted on January 8, 2015

Yesterday, I was picked up by Ambulance Transport at 7.15am for an appointment at Manchester Royal Infirmary at 8.55am. I live approximately 11 miles away. We arrived at 9.20am.

Hospital staff are used to the lateness, so it wasn’t a problem. I was the only one in the waiting room and I thought, ‘Great. What a good do. I won’t have to wait long to be seen. Maybe it was worthwhile getting up at 5.00am after all…!’

After waiting twenty minutes I was called, and then lead into another room. But this wasn’t the surgeon’s room, this was another waiting room: much smaller than the other; cramped full of people like squashed chickens in pens waiting to be slaughtered.

I read a newspaper. I’d brought it with me, and had a rucksack full of them. It was three months out of date. I store them up especially for hospital ‘Day-trips’.

After two hours I was called again, and then lead to another area: The Corridor… Where I was told to sit and wait – again! It was like playing Musical Chairs in ‘I’m A Celebrity Get Me Out Of Here.’: The idiocy of it all, the unnecessary moving about and the impending fear of what the appointment/ trial would entail…

And there I waited, for at least another thirty minutes – before I was called in to see my new surgeon: Mr Freeman. The ENT surgeon I’d requested for a Second Opinion. (But which actually was my Ninth Opinion).

The appointment ended at 12.10pm and I was then directed to the ‘Transport Lounge’ to wait for an ambulance to take me home. No TV in this room – just a bright, flickering, migraine-inducing strobe light.

I put my rucksack on the chair beside me, arranged my coat on top of it to form a pillow, and promptly fell asleep.

At 2.55pm, after dreaming about chips, I was woken and directed to the ambulance. The ambulance was full. The radio was on. The driver was singing, then whistling, and drumming to the beat using his hands on the dashboard.

When Ambulance Transport was privatised earlier this year the Government gave ARRIVA the contract because it was the cheapest. ARRIVA drivers are ex-coach drivers. They have no First Aid training. And they treat patients as though they’re holiday-makers off on a day-trip. Sat behind him, I fantasised about decapitating him. My ears were bleeding… Literally!

I’d had treatment which involves poking and sucking instruments being rammed into the ears to remove wax. My ears are no longer normal inside. Removing the wax is like trying to find your way out of a burning maze whilst holding an egg on a spoon; with the unstable ground below your melting toes groaning and flinching and trying to escape.

Granulations were discovered in my right ear which had to be cauterised. Granulations are deposits secreted by the tumour which lies in wait on the other side of my eardrum, biding its time as it eats its way through my skull.

This regular treatment is excruciatingly painful. But trying to explain why you can’t tolerate noise to an ex-coach driver in an ambulance full of people enjoying the radio – is even more painful.

I arrived home at 4.15pm.

However… Despite this torturous day… Hope emerged.

My new surgeon is fantastic! He listened to me; agreed with me; and has agreed to do the surgery I’ve been begging for for three years.

The surgery itself is very dangerous. And it’s for this reason that my previous surgeon wouldn’t even attempt to operate. There’s a risk of facial paralysis; further deafness; and increased chronic pain.

The surgery is:

On my left ear, to fix the perforation in my eardrum – which occurred when laughing last July, 2013. An investigation will also be done in to why my eardrum tears when I laugh.

On my right ear, the operation is called ‘Obliteration’…! Some years ago, skull-bone was removed from this ear because it was diseased.

What Mr Freeman proposes to do is to take skull-bone from a different section of my head and then use it to rebuild inside the ear. If this is successful it may mean that my ear will be formed enough to be able to handle using a hearing aid.

My hearing itself will not be restored from either surgeries. Last year I had to give up my hearing aids because they were causing too many infections.

Consequentially I had to give up listening to music and the television, and socialising, i.e.: I had to give up going to a local knitting group, going to the theatre and cinema, and eating out with friends.

Obviously giving up these activities has caused me to be very depressed. So to do the surgery, despite the risks, is paramount.

From now on I shall only see him. I will no longer be passed about from doctor to doctor to hospital to hospital. I can now relax; stop fighting to be believed; but now believe that I am, now, getting the best care. After fifteen years of battling with surgeons, it’ll take a while to accept this. Presently, I just feel numb.

My reasons for explaining all this to you is obviously because I want attention and sympathy. But also because I want to raise awareness for the importance of looking after ones ears; to make people aware of the problems deaf people face; and to bring attention to the hidden disease: Cholosteatoma.

After writing this account I decided, despite still feeling weary and dizzy from yesterday’s ordeals, that I’d muster the strength and courage and go to the local chippy.

I don’t actually like this chippy because the staff are rude. So I try my hardest not to go there if I can help it. But tonight, I felt like I deserved those chips. With a tub of hot curry sauce and a can of orange Fanta, that would make my day…

The chippy was shut!

I went into the shop next door and asked what was going on, and was told, ‘They’ve gone on holiday. Yeah. For three weeks’.

Can you believe that?!

courgetteNikki Heywood has a BA HONS in Scriptwriting, and was working in the theatre as an Assistant Director up until Cholosteatoma reared its ugly head… again! Now she just directs her vegetables at her allotment. She says “They’re listening well though and my yields are improving.” She adds: ”  I may be losing my hearing at an alarming rate but my passion to write and desire to be a successful author has never wavered. I’m therefore very fortunate.  Once I’ve mastered Sign Language I hope to go back working in the theatre.”

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