A mum has a rare disorder which feels like having her head trapped in a vice – after her brain began slipping out of her SKULL.
Kimberlee Provan, 44, struggles to do every day tasks such as walking, eating, and even chatting with friends on the phone because of her neurological condition.
Mum-of-two Kimberlee went from a legal aid worker to only being able to sit upright for four hours a day since being diagnosed with the life-limiting illness in December 2013 – which almost paralysed her.
Chiari Malformation affects just one in every 1,500 people, and causes the brain to slip out of the skull and push down on the spinal cord, resulting in severe neck pain, balance problems, muscle weakness, and hearing loss.
Kimberlee, who lives near Blackpool, Lancs, said: “It’s like having your head in a vice and it’s being crushed. It goes through your neck and head and behind your eyes.
“It first started about five or six years ago. It was intermittent to start with and then it was constant, every day.
“Eventually I asked for an MRI scan because I just couldn’t bare with the pain any longer.”
While her doctors had initially believed Kimberlee’s pain to be a side effect of a hip operation, the scan revealed something far more sinister: the lower half of her brain slowly sinking into her spine.
She then found herself being rushed into major surgery at Salford Royal Hospital in Greater Manchester a month later with “the worst pain ever”.
Speaking about the ordeal, Kimberlee said: “They cut into the back of the head and removed a piece of my skull and vertebrae to make more room for the spinal fluid to flow.
“I was told if I hadn’t had the surgery I would have been paralysed within the next few weeks.
“I was absolutely terrified that I wasn’t going to wake up, and if I did wake up, that I wouldn’t be able to move.”
Kimberlee then saw her life completely transform. Once a successful legal aid, she resigned after becoming too weak to leave home – and was forced to drop out of her business degree course.
Speaking of life following the diagnosis, she said: “I have pins and needles in both arms and legs all the time, it never stops, and I can’t lift anything heavier than a cup of tea.
“I can only walk a few metres with a stick – and all other times I need a wheelchair.”
“Because I can walk a few steps I don’t qualify for a power chair with the NHS, but because I have no strength I can’t push myself in my wheelchair and so I can’t go out on my own any more.
“I get up every morning and I try to hard to have a shower but it takes so long. The things I used to take for granted have become my whole day.”
Kimberlee added that her sudden loss of independence had left her feeling like a burden to her two children Alexander, 19, and Olivia, 18.
She said: “My children have been absolutely amazing. My youngest is my carer, she takes care of me and the house. She’s very funny and she’s got a brilliant sense of humour.
“I’m worried that my children worry about me because at their age they should be having the time of their lives. They should be off enjoying themselves, not staying at home helping me in and out of the shower and making dinner.”
Her family and friends have come together to raise money to buy an electric wheelchair and reclining bed to give Kimberlee a much-desired taste of freedom.
Dedicated volunteers will be taking on The Wolf Run, a 10km obstacle course through water and mud, with the aim of raising £3,000 on April 9.
Donations can be made online: crowdfunding.justgiving.com/
