My Health Experience: A pea-sized gland that caused a very big problem

My parents were told one of three things could happen: I could end up blind, brain- damaged or paralysed

‘I think it’s all about your attitude to life. When you’re meant to go, you’re meant to go,’ says Caroline Kane from Tramore, Co Waterford. Photograph: Patrick Browne

‘I think it’s all about your attitude to life. When you’re meant to go, you’re meant to go,’ says Caroline Kane from Tramore, Co Waterford. Photograph: Patrick Browne

 

When I was nine, my mother showed great concern that I wasn’t growing. I was tiny and my hair and nails weren’t growing. I was falling all the time because I was tripping over things. My mother knew there was something wrong.

One day, when I was 10, I was at school and tripped outside, hitting my head off a kerb. I was covered in blood. An X-ray of my skull showed shadowing over my optic nerve.

I had to have a visual fields test, which showed that my peripheral vision was affected. I had a craniopharyngioma, a benign tumour that occurs in children.

I had to be operated on. My parents were told that one of three things could happen; I could end up blind, brain damaged or paralysed. Luckily, none of that happened. My sight stabilised and, thankfully, I had no paralysis.

They took most of the tumour out but because it was on my optic nerve, they couldn’t remove all of it. They put in a shunt and inserted a needle to drain the fluid from the tumour. But I rejected it. In the meantime, I was getting infections and having seizures.

Underactive thyroid

I had an underactive thyroid and I wasn’t producing the growth hormone. Tablets sorted out most of that. I had to have growth-hormone injections. Also, I wasn’t producing cortisol which is normally produced in the pituitary gland and sent to the adrenal gland.

Not having cortisol means you can’t fight stress. I was feeling sick all the time, picking up every cough and cold going. I developed diabetes insipidis. I was put on cortisone tablets, which are a form of steroid.

My tumour is benign, but unfortunately it can grow back. One morning in 2000, I woke up and had no sight at all in my weak eye. I was just off a flight from Boston and thought it was something to do with that.

Then, the following day, the sight in my good eye was really bad. I knew something was wrong.

An MRI confirmed that my tumour had grown back. I had a craniotomy operation. They cut you from one ear to the other at the top of the forehead. Bone had to be removed, so I had a titanium plate put in. Within three months, the tumour had grown back again and I had to have another craniotomy.

I was all set up to have radiotherapy at St Luke’s in Dublin when my tumour returned. I got home to Waterford in time for Christmas.

Within two weeks, I was back in hospital. My tumour was filled with fluid, so they did a different operation, a transphenoidal, which is quite a common operation for pituitary tumours. They go up through your nose because your pituitary is situated at the base of your brain; at the bottom of the hypothalmus.

Finally, I went to St Luke’s for five weeks and had 25 sessions of radiotherapy. I was put on a high dose of cortisone and was flying for three weeks. But then I began to feel tired and sore.

By May 2001, my tumour had come back again and I had another craniotomy. My forehead had been lifted so much that I had no expression on it. I had a shunt put in and my body didn’t reject it. It’s still there.

That procedure in September 2001 was the last one I had. In July 2002, a scan confirmed my tumour was gone. Now I just go for regular check-ups.

Glass half full

At 26, I discovered I had osteoporosis, but that has improved thanks to medication.

The whole thing was very difficult as a teenager. I’m going out with a guy now and when I showed him photos of me at 18, he thought I looked about 12. I always looked younger than I am; I was never let inside the door of nightclubs without ID. I was asked for ID up to the age of 25.

But looking young is brilliant now. I’m 40, and people think I’m a lot younger.

There have been a lot of ups and downs. I’m involved in the Pituitary Foundation, which is celebrating 20 years this year. I’m also the chairwoman of the Cork Brain Tumour Support Group. My mum drives me to meetings in Cork once a month. I don’t drive because of my eyesight.

I’m qualified as a Montessori teacher. For the past 10 years, I’ve been working as a special-needs assistant in a school in Waterford city.

When I’m at work, I’m grand but I get tired in the evenings. I get headaches sometimes but they’re not too bad. I’ve been living with my condition for 30 years, so I haven’t known anything different. I grew to five feet which is my mother’s height and is normal for me.

People in the support group who are happy and laugh a lot get on better. I think it’s all about your attitude to life. When you’re meant to go, you’re meant to go.

If you can keep things as positive as you can, you’ll get through stuff. Stress causes a lot of illness.

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