Woman stayed awake during surgery to remove tumour she dismissed as headache

A woman who suffered a stroke has revealed she stayed awake during an eight-hour operation to remove a brain tumour that left her with a stammer.

Emily Sudlow, 26, thought she just had a ‘cold’ when she endured a 13-day headache in November 2016.

The telemarketing saleswoman was given a note to take to A&E by her GP after she complained of the ongoing symptom but went home to watch Judge Judy instead.

She told how she initially did not grasp the gravity of the situation when doctors said she had a bleed to the brain and went back to playing Candy Crush.

“I was like, ‘Oh okay’, and went back to playing Candy Crush,” Emily said.

“I only told my family I’d had a stroke over text the next morning – by which time I was on the stroke ward.”

“Until the day before, I’d thought I had a cold to be honest.”

She said: “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.”

Emily was diagnosed with a cavernoma – a benign tumour on her brain which had burst, causing a stroke that affected her speech, balance and right side of her body.

She said: “I felt this sense of disbelief that something I thought wasn’t that serious had caused permanent damage.”

“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’.”

Emily soon realised she could not look after herself when she was forced to use a walking stick to get around and became exhausted and forgetful with ongoing speech problems.

After she fell over and wedged herself between the sofa and a footstool for half an hour before rocking herself free, in early 2017, her dad David moved her in with him to look after her.

Unable to work, Emily, from Stoke-on-Trent, spent the rest of the year having intensive speech and physiotherapy.

But the cavernoma was like a ticking time bomb in her head – threatening to burst again at any moment and cause another stroke.

With a history of mental health problems including depression in her teens, doctors were wary of removing the tumour in case a major brain operation was too stressful for Emily.

But a surgeon at Salford Royal Hospital in Greater Manchester agreed to operate if she passed a series of neuropsychology tests, which she did with flying colours.

She said: “I was so grateful that someone gave me the chance.”

On May 24, 2018, with her head numbed above her ear using local anaesthetic, surgeons entered Emily’s brain through her jaw, cut off the cavernoma and sucked it out using a special device.

While she drifted off to sleep at some points, she says she spent at least half of the eight hour operation awake.

She said: “I think they realised they had gone as far as they could go then and stitched me back up.”

Ironically, the swelling of her brain in the immediate aftermath of the surgery meant she could talk normally – stammer free – for a few hours.

“While everyone around me on the recovery ward was being sick from the general anaesthetic, I was sat up, drinking and talking with the nurses,” she said.

But when the swelling first subsided, after three hours, she could only make speech-like sounds at first, followed by single words or short phrases.

“I could say ‘yes’ or ‘mmmhmm’ or ‘eclair please’ for dinner, but I couldn’t say full sentences,” she said.

After five days Emily started speaking coherently again, but, sadly, her a pronounced stammer was back.

Keen to return to normal, in September 2018 she tried returning to work – landing positions as a teaching assistant, then in a children’s home, but both proved too much for her.

When she was forced to leave her last job as a care-co-ordinator in February 2020, after falling in the office, she realised she would be unlikely to work again.

But, while her working life had its challenges, her love life was blossoming, after meeting Rich, 30, a logistics manager, through a dating app in June 2019.

And since June 2020, she has been a volunteer with UK 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, luckily, doctors do not believe it will affect her health and she is determined it will not hold her back.

Living with her boyfriend, while she has accepted that her mild brain damage and stammer will never be completely cured, Emily is finding therapy ‘invaluable’ and is relieved that her medical team do not currently fear she will have another stroke.

She said: “I would love to do more volunteering work verbally and I want to build my confidence with speaking in public. In my group therapy, I have my camera off and only speak via message, but I want to be able to join in fully. I would like to get rid of the shame.

“After everything I’ve been through, I know I will get there.

“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.”

She added: “I’ve got to accept who I am now, as by going back and trying to be who I was before the stroke, I was only hurting myself again and again.

“I was grieving for what could have been, but I have to accept who I am and move forward with my life.”