It wasn’t until day 13 of a “relentless” headache that Emily Sudlow decided to see her GP.
The 30-year-old from Stoke-on-Trent had started “tripping over door frames” at her telecommunications job in November 2016 when she decided to go to her GP - who gave her a note to take to A&E so that she would be seen immediately.
Instead of going straight to A&E, Sudlow went home to watch TV before taking a taxi to the hospital later that night when she started stammering.
Scans and tests revealed the then 26-year-old had suffered a bleed on her brain.
“I only told my family I’d had a stroke over text the next morning – by which time I was on the stroke ward,” Sudlow says.
“Until the day before, I’d thought I had a cold to be honest. You hear stories of brain haemorrhages and people saying it’s the worst headache imaginable – like a hammer hitting you on the head – and your face drops, your arms go weak. Mine was nothing like that at all – it was just a nagging, annoying headache.”
Sudlow subsequently spent two weeks in hospital and was diagnosed with a cavernoma – a benign tumour on her brain, formed from a cluster of abnormal blood vessels, which had burst and bled, causing a stroke that affected her speech, balance and the right side of her body.
Warning: graphic image
“I felt this sense of disbelief that something I thought wasn’t that serious had caused permanent damage,” Sudlow continues.
“I thought, ‘Oh, this is only pins and needles, it will get better’ and then I was told by doctors it wouldn’t. They said, ‘We can get you therapy, but the damage will be permanent.’ When that dawned on me, I thought, ‘Oh, wow, ok’.”
After being discharged, Sudlow soon realised she was exhausted, forgetful and not able to look after herself. In early 2017, her dad, teacher David Sudlow, 63, moved her in with him so he could look after her.
Unable to work, Sudlow spent the rest of the year having intensive speech and physiotherapy.
Diagnosed with mental health problems including depression in her teens, according to Sudlow, doctors were wary of removing the tumour, in case a major brain operation was too stressful for her. But, a surgeon at Salford Royal Hospital in Greater Manchester agreed to operate after she passed a series of neuropsychology tests.
In May 2018, Sudlow had surgery to cut off the cavernoma and claims she spent “at least half” of the eight hour operation awake.
“I wasn’t scared at all – I was really excited, and fascinated by the process,” she says.
During the operation, surgeons made Sudlow complete tests like identifying a picture of a shovel and other inanimate objects, as well as counting from one to 10.
“I remember hearing a lot of drilling going on, but it didn’t hurt at the time. I was just really tired and wanted to have a nap, but they kept waking me up to ask me to look at pictures and tell them what they were showing me,” Sudlow says.
“At one point, the surgeon must have pressed on something, because I started making this high pitched noise – it was so weird. I think they realised they had gone as far as they could go then and stitched me back up.”
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After the surgery, the swelling of the brain meant Sudlow could speak without a stammer for a few hours but when the swelling subsided, she could only make speech-like sounds at first, followed by single words or short phrases.
After five days Sudlow started speaking coherently again but she still had the stammer.
In September 2018 she tried returning to work – landing positions as a teaching assistant, then in a children’s home.
When she was forced to leave her last job as a care coordinator in February 2020, after falling in the office, she realised she would be unlikely to work again. She now volunteers for charity, The Cavernoma Society, sharing her story, doing admin jobs and organising a Christmas fundraising quiz.
Routine scans in November last year revealed a second benign tumour in Emily’s brain, but doctors do not believe it will affect her health.
“I would love to do more volunteering work verbally and I want to build my confidence with speaking in public,” Sudlow adds. “In my group therapy, I have my camera off and only speak via message, but I want to be able to join in fully.”
“For a long time, I did not realise the gravity of what had happened to me and have only recently started coming to terms with it. I was grieving for what could have been, but I have to accept who I am and move forward with my life.”
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To find out more about The Cavernoma Society and Emily’s story, visit cavernomasociety.org.uk