Diagnosed with meningiomas: Emma’s Story
Between February and May 2022, Emma visited her GP five or six times, called 111 twice, and went to her local A&E department twice before finding out what was wrong.
Eventually, she was referred for a neurology appointment, only to be told to expect an 18-week wait. In fact, her neurology appointment came through when she was recovering from brain surgery.
My symptoms started with the loss of vision in one eye. It was all very gradual to start with. Then I noticed I had no sensation down the left side of my face, from my eyebrow to my chin. I also had bad headaches and was very fatigued, but I was working nights in a petrol station and assumed I wasn’t coping with the shift pattern very well. I just thought I’ve been overdoing things.
– Emma
She continues: “When the symptoms first started, the GP wasn’t too concerned. But things got worse instead of better, and I started to get really worried, despite being told by medics that nothing was seriously wrong.”
Worsening symptoms
In April 2022, Emma went to her optician, who flagged concerns to her GP. Her GP made a referral to neurology, but she was advised there would be an 18 week wait for an appointment. Around this time, frightened about her worsening symptoms, which now included a persistent watery eye, she went to A&E at James Paget University Hospital, Great Yarmouth, on the advice of the 111 service, but staff there told her to go home.
Emma said: “It wasn’t helpful at all. I felt like they told me off for making a fuss when I’d already been checked by my GP, and told me to just go home and wait.”
When, in desperation, Emma went to A&E a second time, in May, she says: “My mental health was on the floor.”
This time, she spent the whole day in the eye clinic at the hospital, undergoing tests. The clinic wanted to admit her, but Emma was told it would be a 24 hour wait for a bed, so she discharged herself. She was summoned back in a phone call from the clinic, where she was told her most likely diagnosis was multiple sclerosis (MS). The clinic organised an MRI scan, which Emma had on May 31.
Emma with sons Jaiden and Tristan
A day she’ll never forget
June 8th that year is a day Emma will never forget. She was with two of her children in her local ASDA car park when she got a call from her GP.
Emma said: “He said, the good news is, you don’t have MS – but you do have multiple brain tumours.” When you get told something like that, your whole world stops. It was completely terrifying. Two of my children were in the car with me and they heard it too. I had to hold it together for their sakes. And at the same time, I’m thinking, “I can’t drive us home.”
One of Emma’s meningiomas was pressing on her optic nerve and needed to be removed urgently. In surgery that took place a month after her diagnosis, on July 8th. Due to its position, one of the remaining six tumours cannot be removed, and Emma is on a “watch and wait” regime, with scans every twelve months to monitor things.
Unanswered Questions
After a long recovery from her craniotomy, she is now back at work, and working her way back to normal. But she suffers from fatigue due to the remaining tumours, and the journey to her diagnosis has left her with unanswered questions.
“A brain tumour diagnosis was the last thing I was expecting. I really did not see that coming. Looking back, I was so ill. I was trying to work and get on with normal things, but my headaches were so bad I was taking two Paracetamol AND two Ibuprofen every four hours, and that didn’t even touch the headaches – just dulled them enough so I could function.
“I’m so lucky that it was caught when it was, but I am angry that it took so long for me to get a diagnosis. I went to the doctors with my symptoms, but I wasn’t listened to. In fact, it was like talking to a brick wall. I’ve seen the symptoms list on The Charity website, and I ticked so many of those boxes. How was that not on someone’s radar?
“When it was caught, things had got to a critical stage. One of the tumours was in a dangerous place and needed to be removed quickly. Otherwise, I wouldn’t be here now and my children would be without their mum.”
Research into meningiomas is urgently needed
Research into the condition, in the hope of finding better, more targeted treatments, is something Emma wholeheartedly supports. She said:
“Living with multiple meningiomas has been really hard. I suffer from fatigue due to the tumours, so everyday life is more tiring for me. And the mental effects of living with them and the worry that comes with it is a lot to process. It’s like someone’s pressed pause on your life.
“Every year I have brain scans to check for any growth, and the anxiety builds when you know the scan is due. Then you have the long wait for the results. It’s exhausting constantly worrying if the tumours have grown, or if I will need more treatment.
“Brain surgery is a massive operation and a long recovery. There needs to be more research into understanding these types of tumours, why they grow, and what could be done to treat them other than invasive surgery and radiotherapy.
“Nothing prepares you for hearing you have a brain tumour or tumours – and then to be told you are left with the tumours because treatment options are limited, is very difficult.
“If research into other ways of treating meningiomas was successful, it could make a massive difference to people like me.”
How is our research helping?
Dr Charlotte Eaton’s research focusses on understanding more about meningiomas, as relatively little is understood about their origin. She hopes that this knowledge will help find more effective and kinder treatments, something which Emma is calling for.
Dr. Charlotte Eaton
Charlotte is a postdoctoral researcher at The University of California, San Francisco. Her research aims to define the cells that meningiomas originate from and shed light on how they grow and develop, with the ultimate goal of designing and developing specific treatments for patients.
