'Doctors told me my pain was 'anxiety' and turned me away - now I'm bedridden'
When Maisie Moore visited the doctors with excruciating pain she was told she had pandemic-induced 'anxiety' and sent home - only to later find she had a life-threating condition
A mum who was told the pain in her neck was just anxiety and was sent home by doctors has described the horror moment she found she had a life-threatening neck injury. When Maisie Moore, from south west London visited the doctor, was dismissed by medics who told her she had pandemic-induced 'anxiety'.
The 25-year-old now spends her days trapped in bed with a neck brace with severe neck pain, high blood pressure, a racing heart and intense feelings of nausea. Her partner Rebecca said: 'Maisie has now become bed bound at the age of 25, she spends her days lying down in bed in a neck brace, she has no quality of life and every day gets worse and worse.'
Maisie said when she first visited West Middlesex Hospital's A&E Department in March 2021 she was told by a nurse that she was just suffering with anxiety and was told to go home and contact her GP.
"She was so ill and she's never normally like that so we knew something was wrong,' Rebecca told MyLondon. 'The hospital did multiple tests and everything came back normal but Maisie was in extreme pain - it was awful.'
However her pain persisted and after more than seven visits to A&E Maisie was eventually referred for X-rays and MRI scans. However the couple were left with no answers when the results came back as normal.
Maisie was forced to adjust to her 'new normal' but in December 2024 things took a turn for the worse. Maisie's pain became unbearable and she started experiencing unusual memory loss and a heightened sensitivity to light and sound.
'We have tried every option possible to get answers here in the UK, from private scans to neurology referrals but no one has ever been able to give Maisie any answers that was then we knew we had to take matters into our own hands and find the cause,' Rebecca wrote on a GoFundMe page to help Maisie.
'After a lot of extensive research we came across a condition called Crainocervical Instability and once we compared the symptoms to Maisie's symptoms it was then that everything started to make sense,' she explained. 'After learning about the lack of treatment/knowledge of the condition here in the UK we found a neurosurgeon in Spain who specialises in it and we got in contact.'
A private MRI scan at the Barcelona clinic showed that it was not anxiety that Maisie was suffering with at all, she in fact had a rare condition called craniocervical instability. The rare condition, which affects just 1 in 5,000 people, means the neck is unable to support the weight of the head causing the skull to crush the brainstem and spinal cord.
Left untreated the condition can lead to rapid neurological decline, chronic fatigue, paralysis and, in extreme cases, even life-threatening internal decapitation. The couple were devastated to learn that the cranio-cervical fusion surgery Maisie needs to stand a chance of having a normal life.
A 'heartbroken' Maisie and Rebecca are now facing a £55k bill in Spain as the NHS is unwilling to perform the specialist surgery needed to fix the weakness. Rebecca said: "It was utterly devastating when we learned how much the surgery would be. We don't know anyone with that kind of money, and we definitely have no way of paying it. We're trying our best to stay positive but it's extremely hard. This is our last chance.
The worst part of the ordeal is seeing Maisie become a shell of the 'outgoing' person she once was, Rebecca said. The pair would try and do something together everyday, often enjoying a day out, coffee date or walk with dogs Elsie and Bugsy.
Maisie also ran her own pet grooming business but had no choice but to shut it down as her condition slowly deteriorated. Rebecca added: "To go from that to nothing is incredibly difficult. Every day she's frustrated as she can't do the things she loves to do.
"It's really getting to her. To see her right now is horrible. If I'm honest, I have to constantly find reasons for her to keep going. It's been very hard for her to see any type of hope."
There is, however, one thing that keeps Maisie positive - her one-year-old daughter. Although unable to pick her up, Maisie is comforted by cuddles in bed each night. The family are now dreaming of a life together, with Maisie hoping to recover enough to take her daughter to a park or farm in the near future.
A spokesperson for West Middlesex University Hospital told The Mirror: 'We are committed to delivering high-quality emergency care, ensuring that all patients are treated with compassion and urgency. We take any concerns about individual patient experiences seriously and conduct thorough investigations to seek opportunities to learn and improve.'
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He added: 'We haven't got to the bottom of it, and that's why I'm not blaming anybody, and I don't want to, but I can talk about my experience and my observation of what happened to my mum. 'How does that happen? I know it does happen. People have chronic diseases and people don't know and they die of them – I know it's more likely to happen if you're black, it's also more likely to happen if you're poor. 'It's all part of the same story. I used to own story to illustrate a bigger problem, which is systemic.' On his mother, whose full name was Grace Amoke Owuren Adebowale and who worked in various nursing sectors including mental health, acute care and maternity, he said: 'If you a nurse it is what you are, it's what you're born to do.' Commenting on Lord Adebowale's remarks, Professor Habib Naqvi, chief executive of the NHS Race and Health Observatory, said: 'We extend our sincere condolences, thoughts and support to Lord Victor and the Adebowale family. 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