Rustington woman has stroke on motorway due to ‘raspberry’ brain condition
A Rustington woman who had a stroke while driving on the motorway due to an undiagnosed brain condition has won an award for her charity work.
Simona Stankovska, 32, of Priory Road, has been given the British Citizen Award Medal of Honour for setting up The Cavernoma Society to support fellow patients. She said: “I’m just really honoured that something I have done from the heart is being recognised. Hopefully it will help our charity grow and be noticed.”
On July 9, 2015, Simona was driving home from Buckinghamshire on the M4 when she noticed the sunlight was too bright. This was followed by a ‘shocking, awful headache’, and suddenly she could not understand what her Sat Nav was saying.
She tried to pull over onto the hard shoulder – and the next thing the PR executive knew, she had been sick in her lap and was being flashed by a lorry behind her, having slowed down to 20mph.
Unable to use her arms, she managed to steer onto the hard shoulder and call her mum through the car’s ‘last-dialled’ function. When she heard her daughter could not talk, she called an ambulance and they located Simona via her phone’s GPS system.
However, West Middlesex University Hospital wrongly diagnosed her with meningitis and sent her home with antiviral drugs.
It was only ten days later, when she lost all use of her legs during a meal with a friend in Woking, that she was diagnosed with a cavernoma: a cluster of abnormal blood vessels in her brain which looked like a raspberry and had bled, causing her to have several strokes.
Due to her age, doctors had misdiagnosed her history of blackouts as hormone-related, she said.
These strokes left Simona unable to walk properly, speak clearly or look after herself. She had to move in with her mum, who became her carer.
But on December 5, Simona had it removed during a six-hour operation.
Simona decided against an operation at St George’s Hospital in Tooting, and ended up using her private healthcare to see Mr Neil Kitchen at the National Hospital for Neurology and Neurosurgery, in Queen’s square, London. She said: “He is a cavernoma specialist so he operated on me. St George’s were far less confident and told me I’d be “brain dead”.”
She added: “I was told going in I could be paralysed for life, but when I woke up, I could move my legs. It was a massive relief.
“Brain surgery saved my life, because I had no quality of life before that.
“I needed a zimmerframe to get around; I was like an old woman.”
Simona’s recovery was slow, and included nine months of speech therapy as she was talking backwards.
But despite having a residual left-sided weakness and a hole in her brain, she has regained quality of life.
In 2018, Simona set up the charity, which offers support, advice, private counselling and mindfulness retreats to 800 members affected by cavernoma, and psychological and medical research.
She will be presented with the award on October 22.
Today (September 18) is Raspbery Day – an annual awareness day organised by the charity, with 250 billboards across the UK sharing information about cavernomas, which look like raspberries in brain scans.
For more information, visit The Cavernoma Society’s website, or their Facebook page, Cavernoma Society; on Twitter, @TheCavernomaSoc; or on Instagram, @Cavernoma_Society.
Facts about cavernoma
1)There is currently no cure for cavernoma. However, if the lesion is in an accessible area of the brain or spine, a neurosurgeon may opt to remove it.
2) 1 in 600 people have a cavernoma – often without knowing it. 1 in 400,000 is diagnosed every year due to a cavernoma which has bled.
3) Symptoms include headaches, fits, dizziness, slurred speech, double vision, balance problems, a tremor, weakness, numbness, tiredness and memory problems.
4) If it has never bled, there is less than a 1% chance it will haemorrhage. If it has bled previously, the risk of having another haemorrhage is between 4% and 25% each year, decreasing over time to 1%.