I had headaches my whole life before a brain tumour was found – a change in my symptoms finally led to a diagnosis
NIAMH Rose Mulheron had experienced headaches since she was a child.
It wasn’t until years later, when other symptoms she initially mistook for flu appeared, that her brain tumour was discovered.
The 26-year-old’s headaches were “never taken seriously” and were brushed off as school stress or puberty when she went to see her doctor.
A few weeks before her diagnosis, at the age of 14, Niamh suffered with extreme exhaustion and would sleep for more than 12 hours a day – putting the symptom down to flu.
But when she woke up blind two weeks later, she knew something wasn’t right and she rushed to Western Infirmary Hospital in Glasgow, Scotland, where a CT scan revealed she had a mass on her brain.
She then had an emergency surgery at the Queen Elizabeth University Hospital to remove the tumour, followed by a biopsy, which revealed she had a benign ganglioglioma – a rare brain tumour.
Since having the tumour removed, Niamh has been left with limited peripheral vision – which she said is a constant reminder of her diagnosis but she refuses to let it hold her back.
Niamh, a child care practitioner, from Glasgow, Scotland, said: “After I was diagnosed, we found out that the tumour was pressing on my optic nerve, which is why I went blind before my diagnosis.
“That caused a lot of damage to my eyes, I have no peripheral vision at all.
“That is why I have to wear glasses, but they don’t really help because of the damage the tumour has caused.
“It has affected me a lot, it is something that reminds me of everything that happened.
“As I have no peripheral vision at all, I am constantly on edge because I can’t see properly.
In the weeks leading up to her diagnosis, alongside extreme tiredness, Niamh began vomiting while trying to eat food, and also put this down to the flu.
Niamh said: “I started having headaches for years before I was diagnosed with a tumour.
“It was a day-to-day occurrence that I had, a couple of weeks before my diagnosis, I was sleeping constantly.
“The headaches started to intensify, I would eat and be sick when I was digesting food – I thought I had caught a bug.”
‘It felt like my whole world and life was crumbling’
In February 2013, Niamh went to bed and woke up the next day with blurred vision, so her mum, Christine, 55, took her to the GP, who recommended she go to A&E.
When she got there, Niamh had a CT scan which revealed a mass on the brain and she was transferred to the Queen Elizabeth University Hospital for emergency surgery to remove the tumour.
Niamh said: “Looking back on when I first got diagnosed, I honestly felt like my whole world and life was crumbling.
“Although I was only 14, my mind went into overdrive at all the possible outcomes I could be facing, and that stuck with me for years.
“It was years later when I did actually realise what had happened to me, and that was pretty difficult, because it felt that I had to live it all over again each time I was coming to terms with it properly.”
The emergency surgery was successful, and doctors were able to remove all the tumour – which was found to be bengin – and Niamh was told she didn’t need chemo or radiotherapy.
The biopsy revealed that Niamh had a ganglioglioma – a rare brain tumour composed of both neuronal and glial cells.
Niamh then had two further surgeries one to remove a bone flap when she got an infection and another to remove a second tumour that started growing in her brain.
Niamh said: “Luckily for me, after those three surgeries, I was finished.
“I didn’t need chemotherapy or radiotherapy. At the time, I would go for MRI scans every three months for a year, and now I get a scan once a year.
“I feel so much anxiety when I have a scan coming up, even going into the MRI machine, I feel really anxious thinking they might pick something up again.”
The most common symptoms of a brain tumour
More than 12,000 Brits are diagnosed with a primary brain tumour every year — of which around half are cancerous — with 5,300 losing their lives.
The disease is the most deadly cancer in children and adults aged under 40, according to the Brain Tumour Charity.
Brain tumours reduce life expectancies by an average of 27 years, with just 12 per cent of adults surviving five years after diagnosis.
There are two main types, with non-cancerous benign tumours growing more slowly and being less likely to return after treatment.
Cancerous malignant brain tumours can either start in the brain or spread there from elsewhere in the body and are more likely to return.
Brain tumours can cause headaches, seizures, nausea, vomiting and memory problems, according to the NHS.
They can also lead to changes in personality weakness or paralysis on one side of the problem and problems with speech or vision.
The nine most common symptoms are:
- Headaches
- Seizures
- Feeling sick
- Being sick
- Memory problems
- Change in personality
- Weakness or paralysis on one side of the body
- Vision problems
- Speech problems
If you are suffering any of these symptoms, particularly a headache that feels different from the ones you normally get, you should visit your GP.
Source: NHS
Niamh is now calling for more mental health support for people recovering from brain tumours.
She is still living with the effects of her tumour after it damaged her optic nerve – meaning her vision is impacted – leaving her with no peripheral vision.
She said: “I wish support services, such as those offered by The Brain Tumour Charity, had been flagged up when I was diagnosed and when I really needed them.
“It would have made a massive difference to my life.
“The charity’s digital channels, especially its closed Facebook groups, provide a great place to read about other people’s experiences and connect with people who know what this type of diagnosis is like.
“I was told there was no one or no services that could help me deal with my diagnosis so that was difficult, but then finding the charity has made a massive difference to me.
“Getting to chat to others, read other people’s stories, have that support, it really does make a difference, and that is important.
The Brain Tumour Charity has awarded funding to researchers at Great Ormond Street Hospital (GOSH) in London who are developing a national approach to ensure young people living with the effects of a brain tumour can reach their full potential at school.