Woman’s extreme tiredness was early sign of rare brain tumor

By Ben Barry

A woman who put extreme tiredness, which saw her sleeping 12 hours a day, down to the flu, discovered it was a symptom of a rare brain tumor, which left her partially blind.

Niamh Rose Mulheron, 26, had experienced headaches since she was a child but said they were "never taken seriously" and brushed them 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, put it down to the 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 tumor, followed by a biopsy, which revealed she had a benign ganglioglioma - a rare brain tumor.

Since having the tumor 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 tumor 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 tumor 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.

A few weeks before she was diagnosed, Niamh started experiencing extreme tiredness and would sleep for most of the day.

She also began vomiting while trying to eat food, but put it 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."

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 tumor.

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 realize 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 benign - and Niamh was told she didn't need chemo or radiotherapy.

The biopsy revealed that Niamh had a ganglioglioma - a rare brain tumor 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 tumor 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."

Niamh is calling for more mental health support for people recovering from brain tumors.

She is still living with the effects of her tumor 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 tumor can reach their full potential at school.

Consultant Paediatric Oncologist Dr. Sarita Depani has been awarded £99,441 to review the educational support available at schools around the country for children who have survived brain tumors.