I blacked out while driving down the M4 at age 27 due to my brain disorder

Simona Stankovska was 27 when she lost consciousness behind the wheel of her car on a highway.

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

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

But as she drove to her home in London in late July 2015 after volunteering for a homeless charity, a blinding pain shot through her mind.

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

Despite gradually losing feeling in her arms and legs, she pulled into the emergency lane and called her mother. But Simona couldn’t speak.

“My poor mother just heard me mumbling,” says Simona, 35. “Then I passed out and when I woke up I was sick in my lap.”

Desperately concerned, Simona’s mother called an ambulance, who tracked her daughter down using her phone’s GPS and took her to hospital.

When she arrived at the emergency room an hour later, “the pain had subsided, I could walk, and I was trying really hard to talk,” she says. Blood tests and neurological examination were all normal.

“The doctor thought it was a migraine — I’ve had headaches all my life — and I was sent home with codeine and acetaminophen and told to rest,” she recalls.

But ten days later, Simona collapsed again during a dinner with a friend. “I started feeling sick and when I got up I realized I couldn’t feel my legs,” she says.

Her friend took her to the ER and this time, able to pinpoint pain in the right side of her head, Simona requested a brain scan.

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

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 that form small ‘caverns’ filled with blood.

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

Also known as cavernous angioma or cavernous hemangioma, they resemble raspberries and can range in size from a few millimeters to several centimeters. What causes them to bleed is unclear.

They usually appear between the ages of 20 and 40 and affect men and women equally, and about one-fifth of cases are associated with genetic mutations in three genes: CCM1, CCM2, and CCM3.

Mario Teo, neurosurgeon consultant at North Bristol NHS Trust, says one in 200 people are thought to have a cavernoma and are unaware of it.

“The risk of a cavernoma haemorrhage is small, at 2-3 percent per year,” he adds. ‘Cavernomas are made of small, leaky capillaries, so when they bleed, it usually results in a very small amount of blood in the brain tissue.

“When this happens, the symptoms are fatigue, memory problems, concentration problems, dizziness and slurred speech, balance problems and double vision,” he explains.

‘The brain can adapt to a small bleed, so you get transient symptoms that then go away and the patient recovers.

“But there can be serious symptoms depending on where the bleeding occurs – bleeding in the motor cortex.” [responsible for voluntary movement] can cause paralysis and weakness,” says Teo.

“If there’s bleeding in the speech area, we’ll have trouble talking — you know what you want to say, but words come out wrong.”

“If it happens in a sensory area, in some cases you can feel numbness and heaviness, making it difficult to, say, tie buttons or shoelaces. Hemosiderin staining – blood leakage into surrounding brain tissue – can lead to epileptic seizures.’

While bleeding from a cavernoma can cause stroke-like symptoms, it is not classified as a stroke (which can result from a ruptured blood vessel rather than temporary leaking). However, the effects can be long lasting.

Simona left hospital after a week with weakness on her left side and had to return to her mother’s home in Sussex.

“I walked with a frame and relied on my mom to help me shower and go to the bathroom,” she says.

Over the next four months, she had two more minor bleeds on the left side of her brain, each of which affected her mobility slightly more.

“I got constant pain relief for the pain in my head and slept a lot,” she says.

Once cavernomas have bled, intensive speech therapy and occupational therapy and physical therapy can help get them moving again, but treatment for a cavernoma itself is usually conservative.

“We keep a close eye on them,” says Mr. Teo. This usually includes 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 whether we can safely remove them,” says 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 may be considered, for example using a device called a Gamma Knife that emits radio waves at a high focus.

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

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

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

“When I reached the top, I cried,” she says. “I thought, ‘It’s all behind me. I have my life back.’ ‘

But while surgery can resolve a cavernoma, in November last year, eight years after her original hemorrhage, Simona experienced stabbing pains in the back of her head.

“My memory was not good and I felt exhausted,” she says.

CT scans were clear at first, but in February she had a seizure at home and again lost feeling on the left side of her body.

Her mother rushed her back to the hospital, where a scan revealed she had had minor bleeding at the site of the surgery.

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

Simona spent over a month in the hospital receiving physical therapy to recuperate, and is now back to work in public relations. But she knows there is a chance that another cavernoma will develop.

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

Genetic testing has revealed that Simona does not have the CCM genes associated with cavernoma, but her younger sister, Ellie, 30, a psychologist who lives in Durham, has discovered she also 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 tell our parents,” says Simona. “Mama cried when we told her.” Both parents will now be genetically tested.

“There are things that clinicians still don’t understand,” says Mr. Teo. “Like why some patients’ cavernomas bleed multiple times, while some never bleed.

“Many people have no symptoms and their cavernomas don’t cause any problems at all.

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

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

“Because so little is known about cavernoma, you have to become an expert at 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 apply for benefits, communicate with their GP and access rehabilitation services. We also organize yoga and meditation retreats to help with pain, sleep and anxiety.’

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

“For me, accepting that I have a lifelong condition has been the hardest part,” says Simona. “I hope the garden will help raise awareness and pave the way for much-needed research.”

cavernomasociety.org.uk