'˜Chiari is like having your head in a vice and it's being crushed'
For many people, a quick scrub with a bar of soap under a hot shower marks the start of a long day at the office. But for people like Kimberlee Provan, these seemingly simple tasks dominate her entire day.
Mum-of-two Kimberlee, 44, lives with a rare neurological condition that means she struggles to walk, eat, and even chat with friends on the phone.
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 in Highcross Park in Poulton, was diagnosed with the life-limiting illness in December 2013 after taking to her bed with what she described as ‘the worst pain ever.’
She said: “It started about five or six years ago. It was intermittant to start with and then it was constant, every day.
“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.
“Eventually I asked for an MRI scan because I just couldn’t bear the pain any longer.”
While her doctors had 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.
One month later, she found herself being rushed into major surgery at Salford Royal Hospital in Greater Manchester.
She 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.”
In a matter of months, Kimberlee saw her life completely transformed. Once a successful legal aid, she resigned after becoming too weak to leave her home, and was forced to drop out of her business degree course at the University of Central Lancashire.
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’ve got no power in my body at all.
“I can only walk a few metres with a stick. All other times I need a wheelchair. I’ve gone from studying and working to only being able to sit upright for four hours a day.
“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.”
She 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 my and the house. She’s very funny and she’s got a brilliant sense of humour. She keeps me going.
“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.”
Despite struggling to come to terms with her new limits, Kimberlee admitted that being diagnosed with Chiari Malformation had given her a new appreciation for life.
She said: “It has made me extremely grateful for what I do have. I have two amazing children, wonderful parents and great friends.
“You don’t think about that when you’re rushing around busy every day. I’m still here and I can still do some things for myself.
“Not everybody understands but the one ones that do are absolutely amazing.”
Now 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. People can donate online at crowdfunding.justgiving.com/KimblesChiariWarriors
A Chiari malformation (sometimes called an Arnold Chiari) means that the lower parts of your brain have been pushed downwards towards your spinal cord, so they are below the entrance to your skull.
Most people will have a type 1 Chiari malformation, which is the least serious form of the disease.
This is where the lowest part of the back of the brain (the cerebellar tonsils) drops down into the top of the spinal canal.
Types 2 and 3 Chiari malformations are less common and more serious. They are associated with spina bifida (a birth defect involving problems with spinal development), and adults will also have hydrocephalus (a build-up of fluid in the brain)