I blacked out while driving down the M4 at age 27 due to my brain disorder that’s MUCH more common than you think

Simona Stankovska was 27 when she lost consciousness at the wheel of her car while driving on a motorway.

The terrifying event on the M4 came after more than a year of frequent headaches, fatigue and poor concentration.

Her GP had put Simona’s symptoms down to stress and had advised her to take time off from her busy job as a financial journalist.

But driving towards her home in London after volunteering for a homeless charity at the end of July 2015, a blinding pain ripped through her head.

‘I’d had a headache all day,’ she says. ‘I’d taken paracetamol and it had improved, but in the car it came back suddenly; the sun seemed too bright and I couldn’t understand what my sat nav was saying.’

Simona Stankovska was 27 when terrifyingly she lost consciousness at the wheel of her car while driving on a motorway

A scan revealed a bleed on the right frontal lobe of Simona’s (pictured) brain, an area important for movement and language

Despite gradually losing the feeling in her arms and legs, she pulled on to the hard shoulder and called her mother. But Simona was unable to get any words out.

‘My poor mum just heard me mumbling,’ says Simona, 35. ‘Then I lost consciousness, and when I woke up I’d been sick in my lap.’

Desperately worried, Simona’s mum called an ambulance, which located her daughter using her phone’s GPS and took her to hospital.

By the time she arrived at A&E an hour later, ‘the pain had eased, I could walk and was making an enormous effort to talk,’ she says. Blood tests and a neurological examination were all normal.

‘The doctor thought it was a migraine — I had suffered from headaches all my life — and I was sent home with codeine and paracetamol and told to rest,’ she recalls.

But ten days later, Simona collapsed again while out for dinner with a friend. ‘I started to feel sick and when I stood up, I realised I couldn’t feel my legs,’ she says.

Her friend took her to A&E and this time, able to pinpoint pain in the right side of her head, Simona asked for a brain scan.

This revealed a bleed on the right frontal lobe of Simona’s brain, an area important for movement and language; it explained the numbness in her limbs and difficulty finding words.

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Simona was admitted to a ward and an MRI scan the next day revealed the cause: she had a cavernoma — a cluster of abnormal blood vessels which form tiny ‘caverns’ filled with blood.

Cavernomas are usually found in the brain and spinal cord, but can occur anywhere in the body.

Also known as cavernous angioma or cavernous haemangioma, they resemble raspberries and can range in size from a few millimetres to several centimetres. What triggers them to bleed is unclear.

They tend to appear between the ages of 20 and 40, affecting men and women equally, and about a fifth of cases are associated with genetic mutations in three genes: CCM1, CCM2 and CCM3.

Mario Teo, a consultant neurosurgeon at North Bristol NHS Trust, says it’s thought one in 200 people may have a cavernoma and not be aware of it.

‘The cavernoma bleed risk is small, at 2-3 per cent per year,’ he adds. ‘Cavernomas are made up of tiny, leaky capillary-type vessels, so if they bleed, it typically results in a very small amount of blood in the brain tissue.

‘When this happens, symptoms include tiredness, memory problems, difficulty concentrating, dizziness and slurred speech, problems with balance and double vision,’ he explains.

‘The brain can adjust to a tiny bleed so you get transient symptoms which then resolve and the patient recovers.

‘But there can be major symptoms, depending where the bleed happens — a bleed in the motor cortex [responsible for voluntary movement] can cause paralysis and weakness,’ says Mr Teo.

‘If there is a bleed in the speech area, we’ll see difficulty talking — you know what you want to say, but words come out wrong.

‘If it happens in a sensory area, you can feel numbness and heaviness in some cases, making it difficult, for instance, to do up buttons or shoelaces. Hemosiderin staining — blood seepage into surrounding brain tissue — can lead to seizures.’

While a bleed from a cavernoma can cause stroke–like symptoms, it is not classed as a stroke (which may result from a ruptured blood vessel, rather than temporary leaking). The effects, however, can be long-lasting.

An MRI scan the next day revealed the cause: she had a cavernoma (pictured on right side of brain) — a cluster of abnormal blood vessels which form tiny ‘caverns’ filled with blood

Simona opted for surgery and in December 2015, she underwent a six-hour operation to remove a 3cm cavernoma and 1cm of surrounding tissue. Pictured is the scar after the surgery

Simona left hospital after a week with weakness on her left side, and had to move back into her mum’s home in Sussex.

‘I was walking with a frame and relying on my mum to help me shower and use the loo,’ she says.

Over the next four months she had two more small bleeds on the left side of her brain, each impacting her mobility a little more.

‘I was on constant pain relief for the pain in my head and sleeping a lot, ‘ she says.

Once cavernomas have bled, intensive speech therapy and occupational and physiotherapy can help regain movement, but the treatment for a cavernoma itself is usually conservative.

‘We keep a close eye on them,’ says Mr Teo. This usually involves MRI brain scans to look for evidence of change.

‘Surgery is also an option for cavernomas that bleed multiple times — depending on the location and if we can remove them safely,’ says Mr Teo.

However, brain surgery carries many risks, including damaging healthy tissue.

For some cavernomas, such as those in some deeper parts of the brain, radiosurgery, for example, using a device called Gamma Knife that emits high-focus radiowaves, may be considered.

Simona opted for surgery and in December 2015, she underwent a six-hour operation to remove a 3cm cavernoma and 1cm of surrounding tissue.

After nine months of physiotherapy, speech and occupational therapy, she was well enough to pick up her life again.

She started a new job and even climbed Machu Picchu in Peru.

‘When I got to the top, I cried,’ she says. ‘I thought: ‘It’s all behind me. I’ve got my life back.’ ‘

But although surgery can solve cavernoma, in November last year, eight years after her original bleed, Simona began to get shooting pains at the back of her head.

‘My memory wasn’t good and I felt drained,’ she says.

CT scans were initially clear but then in February she had a seizure at home and again lost sensation down the left side of her body.

Her mother rushed her back to hospital, where a scan revealed she’d had a small bleed at the site of the surgery.

‘I just broke down,’ says Simona. ‘After all I’d been through, I felt I was going back to square one.’

Simona was in hospital for more than a month having physiotherapy to build up her strength, and she is now back at work in public relations. But she knows that there is a chance another cavernoma might develop.

‘I’ve cried, felt angry and frustrated, and thought: ‘Why me?’,’ she says.

Genetic testing has revealed Simona doesn’t have the CCM genes linked with cavernoma, but her younger sister, Ellie, 30, a psychologist who lives in Durham, has discovered that she, too, has the condition. Unusually, Ellie’s cavernoma is in her liver. A bleed in October 2021 resulted in emergency surgery.

‘We didn’t know how to break it to our parents,’ says Simona. ‘Mum cried when we told her.’ Both parents will now undergo genetic testing.

‘There are things clinicians still don’t understand,’ says Mr Teo. ‘Such as why some patients’ cavernomas bleed multiple times, while some never bleed.

‘Lots of people have no symptoms and their cavernomas don’t cause problems at all.

‘So although we know that a large number of people have cavernomas, they don’t all behave in the same way.’

Frustrated by the lack of information available, Simona founded the Cavernoma Society four years ago.

‘Because so little is known about cavernoma, you have to become an expert in managing your own condition,’ she says.

The charity offers those affected support and a place where they can share their experiences.

‘We also provide practical support, helping members to claim benefits, communicate with their GP and access rehabilitation services. We also host yoga and meditation retreats to help with pain, sleep and anxiety.’

The Cavernoma Society is looking for sponsors to fund a garden at RHS Chelsea Flower Show this year: its aim is ‘to spread the word about cavernoma’.

‘For me, accepting I have a life-long condition has been the hardest thing,’ Simona says. ‘I hope the garden will help to raise awareness and pave the way for much-needed research.’

cavernomasociety.org.uk

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