Routine eye test reveals woman's headache was a ‘ticking time bomb’ brain condition

Marie Claire Dorking
·5-min read

This article contains graphic medical images that some people may find distressing.

Rebecca Dean's routine eye test revealed a potentially life-threatening brain condition. (PA Real Life)
Rebecca Dean's routine eye test revealed a potentially life-threatening brain condition. (PA Real Life)

A woman has revealed how a routine eye test uncovered she had a potentially fatal brain condition, and following treatment she suffered two further life-threatening health problems: meningitis and COVID-19.

Rebecca Dean, 35, from Hyde, Greater Manchester, had been suffering from a constant dull headache in the build up to her regular eye test in November 2020.

The nursing and midwifery student attends eye tests every six months because of a rare pre-existing condition, Reis-Buckler’s corneal dystrophy, which affects the cornea and can cause cloudy vision, eye pain and sight loss.

But at this particular appointment Dean was alarmed when her worried optician sent her straight to hospital for investigations.

Read more: Girl born with head weighing 5lb undergoes surgery to rebuild her skull

“I mentioned that I’d been having headaches for about two weeks, which I don’t normally get,” she says.

“It wasn’t a crippling headache like migraine pain – it was just a dull ache, as though someone was squeezing my head. It was more pressure than pain, but it was there and it was noticeable.

“They did a full examination of my eye to check the optic nerve and noticed something not quite right. The optician referred me to the hospital there and then.”

Rebecca Dean with children Ethan, Erin and William. (PA Real Life)
Rebecca Dean with children Ethan, Erin and William. (PA Real Life)

Scans revealed Dean had hydrocephalus – a build-up of fluid on the brain, which the NHS says can be fatal if left untreated.

While doctors were not sure if Dean had been living with hydrocephalus for years, or if it had just developed, her headaches were a clear sign that the fluid build-up was intensifying.

“The headaches were the fluid making my brain swell and press onto my skull,” she says.

“Being told it was hydrocephalus was quite scary. I’ve got three young children and I was only supposed to go for an hour-long appointment.

“I didn’t really have time to get my head around it because, as soon as I got the diagnosis, I was transferred to another hospital and it was all systems go.”

Read more: When to go to hospital with coronavirus

“It was quite scary, as I was all on my own and it all happened very quickly. It was so unexpected it felt a bit surreal,” she adds.

“At the time, I was more nervous for the children than myself, but it’s been pretty traumatic.

“I’m lucky I’m here to tell the tale.”

Just a week after her diagnosis, Dean endured an hour-long operation on her brain, during which surgeons drilled two holes into her head to help the fluid drain away.

Rebecca had holes drilled into her skull to drain the fluid from her brain. (PA Real Life)
Rebecca had holes drilled into her skull to drain the fluid from her brain. (PA Real Life)

Known as endoscopic third ventriculostomy (ETV) treatment, as well as drilling into her skull, the surgeons created a hole in the floor of the brain to allow trapped spinal fluid to drain.

“The surgeon described it as unblocking a sink,” Dean explains.

“The tube that drains fluid from my brain was blocked – as though it had webbing across it.

“This procedure creates another hole which diverts the fluid, so it goes back down your spine.

“They wanted to perform the surgery as soon as possible – it was basically a ticking time bomb,” she adds.

Watch: Girls with hydrocephalus undergoes surgery to rebuild her skull.

Dean had to stay in hospital for a month, which was longer than expected, due to contracting bacterial meningitis and testing positive for COVID-19.

“I was warned the meningitis was a risk before the surgery but it would have been much more dangerous not to have the operation,” she explains.

“I started showing signs that evening – I was lethargic, had a temperature and felt generally unwell.

“The nurses picked up on it straight away and I was also tested for COVID-19, which unfortunately came back positive, too.

“We couldn’t even be sure which symptoms were from which illness,” she adds.

Read more: Alcohol deaths hit record high amid pandemic

Rebecca Dean and fiancé Colin Cooper. (PA Real Life)
Rebecca Dean and fiancé Colin Cooper. (PA Real Life)

With all visits from her fiancé Colin Cooper, 33, and children – Ethan, six, Erin, five, and William, two – banned because of COVID-19 restrictions during the second national lockdown, Dean was forced to keep in touch with her family via FaceTime.

But the triple whammy of hydrocephalus, COVID and meningitis eventually left her too wiped out to communicate.

Dean pulled through and was able to leave hospital at the end of November for a joyful reunion with her family.

She is still being regularly monitored at frequent check-ups with neurologists and ophthalmologists and will need frequent MRI scans.

Dean has been told to watch out for headaches, stuttering or collapsing, which are indicators that the hydrocephalus may have returned.

She also has a pressure monitor installed to measure the levels of fluid inside her head.

But Dean is determined to carry on as normal and is still keen to finish her nursing studies.

“I’m not the sort of person that dwells or feels sorry for myself and I wanted to get on with it and get back to my normal life,” she says.

Rebecca Dean is now recovering at home.(PA Real Life)
Rebecca Dean is now recovering at home.(PA Real Life)

Dean has been in touch with specialist spina bifida and hydrocephalus support charity, Shine, who she says have been “brilliant”.

She is keen to tell her story in order to raise awareness about the importance of having regular eye tests.

“I feel very grateful to Specsavers and genuinely believe I wouldn’t be here if it wasn’t for them,” she said.

“It’s made me a lot more aware of how important it is to get your eyes tested – they can spot so much more than just vision problems. They don’t just sell you glasses.”

Amy Tang, optometrist at Specsavers in Hyde, is delighted to have been of help.

“Cases like Rebecca’s really show why it is so important to have regular eye tests.” she says.

“We can detect so much more than just changes in vision and, in some instances, wider health concerns which can be life-threatening.”

Additional reporting PA Real Life.

Watch: Teenager has cancer scare after an eye test.

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