A woman who suffered debilitating seizures for seven years was discovered to have a brain tumour – which doctors believe could have been there since she was a CHILD.
Nicola Clark, 43, was misdiagnosed with epilepsy, but when the seizures worsened she sought a second opinion and medics discovered a rare tumour often found in children.
Nicola did not realise she was having the blackouts – known as absence seizures, which cause sudden bouts of unconsciousness – until relatives pointed it out in 2011.
She underwent tests for two years and baffled doctors could not find the cause of the seizures. In 2013, she was wrongly diagnosed with epilepsy.
Initially, she was having seizures once every few months, but they became so frequent that she was having at least two per week.
She found herself in dangerous situations such as collapsing in the road and, in 2018, she sought a second opinion from a neurologist at the Royal Hallamshire Hospital in Sheffield.
It was only then that an MRI scan revealed a mass which was later confirmed to be a tumour the size of a golf ball, which was a Grade 1 ganglioglioma.
Gangliogliomas are most commonly diagnosed in children and are slow-growing.
As previous tests hadn’t revealed Nicola’s tumour, doctors think it was growing as her symptoms increased.
Nicola, an IT analyst, said: “The seizures had an impact on every part of my life.
“I couldn’t drive for seven years, I had to give my driver’s licence up because of them.
“The doctors thought I had been living with it since childhood and that it had grown slowly since then and even more since my symptoms began.
“They think my seizures were getting worse because the tumour was growing.
“Despite their best efforts, it just wasn’t picked up on any test or scan.”
Nicola, from Burnham-on-Crouch, Essex, first noticed her symptoms when family members pointed out she would zone out of conversations for a few minutes and not be aware she was doing it.
She was also becoming tired but put it down to fatigue from work and a busy lifestyle.
She said: “None of the tests I had at first picked up any abnormalities and I was diagnosed with epilepsy because they thought that was what was causing them.
“I just accepted it, but when they got worse, my mum and I did some research and I wondered if it could be something else.
“I had mixed feelings about the diagnosis – half of me was relieved and half of me was scared.
“One half thought, ‘excellent, I know what it is now and what is causing the seizures’.
“The other half thought, ‘oh my god, this can’t be treated by tablets, I’m going to need an operation’.”
After having brain surgery in 2018, Nicola returned to work six months later and even learnt Mandarin – to challenge herself and her brain.
She received her certificate just 18 months after undergoing the operation and she is now studying for a BA (Hons) degree in Humanities.
She added: “My neuropsychologist told me after a few months that my memory was getting better and joked that I should learn Mandarin. So I thought ‘why not?’
“It gave me a challenge to see how my brain was functioning after the operation.
“After brain surgery, you’re left with a traumatic brain injury and I wanted to replace a negative with a positive and develop a new skill.
“Studying has helped to take my mind off things. It hasn’t been easy as I have had fatigue after my surgery so working and looking after Amelia is enough to tire me out.”
Now Nicola, who met her husband Matt in 2013, wants to urge others to be aware of the symptoms and get them checked out.
She added: “I originally put all these symptoms down to the stressful events which were happening in my life at the time.
“When people started to ask me if I was OK, I would just make light of it and explain it away as if it was nothing to worry about.
“It’s not just the people who have seizures that are affected, people around them are indirectly affected too.
“Brain tumours are often a hidden condition as are their side-effects, so people may think we’re just being lazy when we actually have debilitating fatigue.
“If there is more awareness and support within society then we can talk more openly about this instead of people avoiding the subject or brushing it off when they feel unwell.”
