Brain tumour surgery by Emily, 21

Emily, 21, had surgery to remove a brain tumour at Great Ormond Street Hospital (GOSH) when she was 11 years old. She tells us what it was like being in hospital and how she is doing today.

“I came to GOSH 10 years ago because I was diagnosed with having a brain tumour – neurofibromatosis type two.

“I was having really severe migraines for about a year or two, but we thought it was just migraines. I went to the opticians and he told me that the discs behind my eyes were blurred. He referred me to hospital where they did a brain scan and found a tumour. That night I was taken to GOSH and within a week I had the operation.”

Learning to walk again

Emily pre-surgery at GOSH
Emily aged 11, before her surgery
“The surgeon wasn’t able to remove it all to begin with. Then, after the operation, they did a full body scan on me and found a tumour on my spine as well. All of the tumours were benign but after my second operation, because he had to remove the rest of the tumour on my brain, it frayed some of the nerve endings and I was almost paralysed down my left side. I pretty much had to re-teach myself how to do things again. I was left handed so I had to teach my right hand to start writing and I had to teach myself to walk again as well.

“I was determined to be out of hospital before Christmas and the consultant told me that if I could walk a little bit he’d let me go. I remember my sister and my mum had come to visit me, my dad was with me already, and one of the nurses had told them ‘wait, Emily wants to show you something’. My mum was panicking – this was about four days after my operation – and she just saw me walk across the corridor!”

After the operations

“I got discharged from hospital care, after being five years clear of everything, but within two months I was back because I was diagnosed with epilepsy. Where they removed the tumour there’s a space and it just fills with fluid but I’m three years clear of having a seizure now so it’s controlled.

“The doctors and nurses at GOSH were amazing, absolutely amazing. There was one who came round every day just to chat with me. I just remember she’d always speak to me about Eastenders, because I like Eastenders. They just made it a nice place to be considering the situation you’re in.”

Looking to the future

“My diagnosis was a complete shock for everyone – we just thought I was having migraines because it runs in my family. We were told it was a genetic condition but after lots of tests it came out that I was the first gene carrier – there’s no history of it at all. It’s difficult because I’ve had to have lots of chats about the future but I’m a much stronger person from it all. 

“I’m now at uni training to be a teacher and I’d quite like to teach children who can’t get out of the home or go into a hospital to help where I’ve been helped before.”

Advice for others

“I wanted to share my story because it’s such a big milestone coming up  – 10 years since my operation – and even though some things along the way have set me back a bit, I’m where I am now and everything’s fine.

“You’ve got to be strong. You’ve got lots of people around you who are there to help and if you want to talk to someone, do because it helps to talk about what’s going on. You’ll get through it if you’re strong and everything will be fine in the end.”