'I was fit and healthy but had 'stress' headaches before ultra-rare diagnosis'
A 'fit and healthy' woman was left paralysed after headaches she believed were down to 'work stress' turned out to be warning signs of an extremely rare brain condition. Alicja Faryniarz, 44, said she sensed something 'wasn't right' but her symptoms were repeatedly dismissed by medics as migraines or sinus issues.
The accountant started experiencing severe headaches during her 20s, which caused fainting spells and overwhelming tiredness. Yet every time she visited her GP, she claims they "brushed it aside" and gave her painkillers despite her enduring "intense pain".
It was only in September last year that her brain condition was identified after she had a stroke whilst playing tennis. Alicja collapsed on court and was rushed to hospital, where medics diagnosed her with brain arteriovenous malformation (AVM).
AVM impacts fewer than 1% of Brits and occurs when tangled blood vessels form abnormal connections between arteries and veins in the brain. The condition is typically present from birth, though it can develop later in life, and sufferers seldom display symptoms, the NHS states.
Alicja had a three-inch AVM, which burst and left the right side of her body paralysed whilst also putting her in a coma for three days. She is now highlighting the "hidden" risks of the rare condition, which she had no clue she was born with.
Alicja, from Cobham, Surrey, shared her harrowing experience: "My life ended on the day I had the stroke and I'm still trying to get it back. I've had to give up my life as I can no longer enjoy the things I loved like cycling, running, dancing, walking my dog, the list goes on.
"If I was given a CT scan instead of doctors brushing it aside, I believe they would have found it and none of this would have happened. I'm no longer the same person."
Attributing the cause of her AVM rupture to workplace stress and a recent blood donation that may have thickened her blood, Alicja recounted the strain she was under: "I had a lot of plates spinning and life was very overwhelming at times. I would have these severe headaches where I would have to pause work and lie down for a moment and take some time until it passed."
Alicja's ordeal began in her early 20s with severe headaches and fainting spells, during which she said doctors simply prescribed painkillers for the "horrific pain" allowing her to continue her active lifestyle and work commitments.
Her condition deteriorated after moving to the UK from Poland in 2004, experiencing more frequent headaches and extreme fatigue. The situation reached a crisis point in 2021 during the Covid-19 pandemic when an intense fainting episode led to her collapsing in her bathroom, resulting in a black eye and concussion.
Alicja said: "I had collapsed and hit my head on the bathroom tiles. An ambulance was called but they only arrived the next day and as I had Covid at the time they wouldn't take me to the hospital."
She is convinced that a timely hospital visit and brain scan would have detected the AVM, potentially preventing the upheaval of her life. Despite this, she endured three more fainting spells before suffering a stroke on September 3 last year.
Alicja said: "I had worked from home and had travelled to Esher Tennis Club for an end-of-summer competition. The past weekend I had been on a 115km bike ride and went on a walk with friends, and to be honest, I wasn't feeling too well, but I had gotten used to it.
"I played the first game fine, but then during the second match, I hadn't played for very long when my vision went blurry and I had a really intense headache. I remember collapsing to the floor not being able to move or speak and being in agony - I was terrified and thought I was dying."
She revealed that it took two hours for an ambulance to arrive before she was taken to St Peter's Hospital in Chertsey, where doctors induced a coma. Later, she was transferred to St George's Hospital in London and admitted to the ICU, awakening three days later on September 6.
Alicja said: "When I woke up I was unable to move the right side of my body and I couldn't speak. I had to physically pick up my right and leg with my right hand just to move it.
"Half my body was gone, like it never existed, like someone had just taken it away. It took me two weeks just to be able to move my middle finger a little."
Alicja's recovery journey began at St George's hospital and continued until September 22, before she was transferred to Woking Community Hospital for a further stretch of over a month. A year has passed since her ordeal, and now Alicja can speak and move her right arm, yet walking unaided remains out of reach, with a walking stick or wheelchair being essential for mobility.
She emphasised: "If you know or think something is wrong make sure you get it checked out. I'm sharing my story as I want to spread awareness that it could happen to anybody."
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