One mother says a routine eye test revealed a potentially fatal brain condition that caused a triple blow of life-threatening health problems.
Nursing and midwifery student Rebecca Dean suffered from constant dull headaches prior to an eye test in November 2020.
The 35-year-old from Hyde, Greater Manchester, was alarmed when her worried optician sent her to the hospital for a check-up.
She was diagnosed with hydrocephalus – a buildup of fluid in the brain that, according to the NHS, can be fatal if left untreated. She was admitted for a drastic operation to drill holes in her skull and the bottom of her brain to drain the brain’s fluid away.
However, her inpatient stay was extended to almost four weeks. During that time, her fiancée Colin Cooper, 33, looked after her children Ethan, six, Erin, five, and William (two) after contracting bacterial meningitis and testing positive for Covid-19 in the hospital.
Rebecca said, “It was pretty scary because I was alone and everything happened very quickly. It was so unexpected that it felt a bit surreal.
“At the time I was more nervous for the kids than I was myself, but it was pretty traumatic.”
She added, “I’m happy to be here to tell the story.”
Rebecca, who became a mature student after 10 years as a caregiver, takes religious eye tests every six months because a rare pre-existing condition, rice-buckler corneal dystrophy, affects the cornea and can cause cloudy vision, eye pain, and loss.
During her appointment in November, she mentioned her recent headache and received a full eye exam with 3D imaging and an on-site visual inspection.
“I mentioned that I’ve had a headache for about two weeks that I don’t normally get,” she said.
“It wasn’t a crippling headache like a migraine – it was just a dull ache, like someone was pressing my head. It was more pressure than pain, but it was there and it was palpable.
“They did a full examination of my eye to check the optic nerve and found that something was not quite right. The optician referred me there and then to the hospital. “
After the optometrist found pressure on her optic nerve, he sent her to an ophthalmologist at Stepping Hill Hospital in nearby Stockport, where she was seen three days later.
In an initial round of CT and MRI exams, doctors found hydrocephalus, which the NHS says is more common in newborns and over 65s and can cause headaches, nausea, visual disturbances, and walking difficulties.
Rebecca said she shouldn’t leave the hospital because she needed constant surveillance and urgent treatment: “The ophthalmologist did the usual test and put drops in my eyes. Then I had a CT scan and the radiologist thought something was wrong with my optic nerve. “
She explained, “But then they found fluid in my brain and said I would have to stay in the hospital until it was fixed.”
While doctors weren’t sure if Rebecca had lived with hydrocephalus for years or if it had just developed, her headache was a clear sign that the fluid retention was increasing.
“The headache was the fluid that made my brain swell and press against my skull,” she said.
After a second, more detailed MRI scan, taken to the neurology department at Salford Royal Hospital in Greater Manchester, experts confirmed the diagnosis and found that three of the four ventricles in her brain – cavities containing spinal fluid – were enlarged and severely swollen.
“It was pretty scary when you told him it was hydrocephalus,” said Rebecca. “I have three young children and should only make an hour-long appointment.
“I didn’t really have time to look into it because as soon as I got the diagnosis I was moved to another hospital and all the systems were up and running.”
Rebecca continued, “But the staff didn’t panic me at all – they were brilliant.”
Just a week after she was diagnosed, Rebecca suffered an hour-long operation on her brain that involved surgeons drilling two holes in her head to allow the fluid to drain.
Known as endoscopic third ventriculostomy (ETV) treatment and drilling into their skull, they provided a hole in the bottom of the brain to allow trapped spinal fluid to drain away.
Rebecca said, “The surgeon described it as unlocking a sink.
“The tube that drains fluid from my brain was clogged – like it had a strap.
“This process creates another hole that diverts the fluid so that it flows back down the spine.”
“They wanted to have the operation done as soon as possible – it was basically a ticking time bomb,” she said.
Since all visits to her family were banned due to Covid-19 restrictions during the second national lockdown, she stayed in the hospital for almost a month.
Her stay was extended because she contracted bacterial meningitis after her surgery – an infection of the protective membranes around the brain and spinal cord that can cause fatal blood poisoning – and then tested positive for Covid-19.
Rebecca said, “I was warned that meningitis was a risk before the operation, but it would have been much more dangerous not to have the operation.
“That evening I showed signs – I was sluggish, had a fever, and was generally unwell.
“The nurses noticed it straight away and I was also tested for Covid-19, which unfortunately also turned out positive.”
She added, “We couldn’t even be sure which symptoms were due to which illness.”
Rebecca had FaceTimed her children up to four times a day during her stay – but the triple mess of hydrocephalus, Covid, and meningitis left her too obliterated to communicate.
She was given the best possible antibiotics available – given through a central line in her chest, because the drugs were so effective they risked damaging her veins.
“I slept the whole time I got meningitis,” she said. “The drugs they gave me were so strong they said they might as well be” medicinal bleach “.
“I couldn’t use my phone for a day or two, so Colin and the kids were very worried about me.”
But Rebecca praised the doctors and nurses who looked after her and comforted her family during their stay.
“Everyone from start to finish was absolutely brilliant,” she said.
“If I needed anything at all, they went out of their way to help me.
“Colin couldn’t visit me at the hospital and he panicked when I stopped answering the phone.”
“But after he called the station they told him what was going on and calmed his mind,” she said.
“You’ve been of great help to both of us.”
Fortunately, Rebecca pulled through and after fully recovering from Covid and meningitis, she left the hospital on Monday November 30th to meet her young family at home.
She is still regularly monitored with frequent checkups with the neurologists and ophthalmologists at both hospitals and said, “Fortunately, I’m here to tell the story.
“When I suddenly went missing, I was more worried about my children than about myself.
“When I got home they were very gentle with me because they knew I had had an operation and they were trying to help as much as possible.”
Rebecca’s eldest son, Ethan, even learned to understand his mother’s medical bracelet and knows exactly what to say to paramedics when she is unlucky enough to have a seizure, which can be a side effect of fluid retention.
She will need frequent MRIs and watch out for headaches, stuttering, or collapsing – all signs that the hydrocephalus is back. She also installed a pressure monitor to measure the fluid level in her head.
Rebecca continued, “If the older two go to school because of Colin’s key work, they’ll ask if I’ll be there when they get home.”
“When it snowed recently, Ethan held my hand to make sure I didn’t slip and fall – he doesn’t want me to hit my head,” she said.
“He even knows how to read my medical bracelet to the ambulance people – he’s very excited and they’re all very considerate.”
But Rebecca is determined to carry on normally and wants to finish her nursing degree.
She said, “I’m not the kind of person who lives inside of me or feels sorry for me, and I wanted to get on with it and get back to my normal life.”
“But later, when I thought about it, when I got out of the hospital, I realized what had happened.
“I’m in a pain management program now and I have to accept that headaches will now be my new normal.”
She added, “I have frequent checkups with ophthalmologists and neurologists.”
Rebecca was also in contact with the specialized spina bifida and hydrocephalus charity Shine, which she thought was “brilliant”.
She said, “They offered support and advice because it was obviously quite traumatic.”
And she emphasized the importance of having regular eye tests.
“I’m very grateful to Specsavers and I really think I wouldn’t be here without them,” she said.
“I’ve thanked them with a bouquet of flowers since I was released.”
“You were absolutely brilliant,” she concluded.
“It made me much more aware of the importance of having your eyes tested – they can do so much more than just spot vision problems. They aren’t just selling you glasses.”
Amy Tang, an optician at Specsavers in Hyde, is happy to have helped you.
She said, “Cases like Rebecca’s one really show why it’s so important to have regular eye tests.
“We can identify so much more than just changes in vision and, in some cases, more general health concerns that can be life-threatening.”