- Kimberley Provan, 44, has neurological condition – Chiari malformation
- Means the lowest part of the brain drops down into the spinal canal
- She needed lifesaving surgery to stop her from being paralysed
- Struggles to walk and is now fundraising to get an electric wheelchair
A mother 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 everyday tasks such as walking, eating, and even talking because of her neurological condition, which is causing her brain to push on her spinal cord.
The mother-of-two can only sit upright for four hours a day since being diagnosed with the life-limiting illness which almost paralysed her.
The legal aid worker, from Blackpool, Lancashire, was diagnosed with Chiari malformation, which causes the brain to slip, leaving part of it below the skull, in December 2013.
It affects just one in every 1,500 people, and causes severe neck pain, balance problems, muscle weakness, and hearing loss.
‘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,’ she said.
‘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 the pain was a side effect of a hip operation, the scan revealed something far more sinister.
It showed the lower half of her brain was 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’.
‘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.’
Once a successful legal aid, Ms Provan was forced to give up her job after becoming too weak to leave home.
She was also forced to drop out of her business degree course.
‘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.’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 moveKimberlee Provan, 44
Ms Provan said her sudden loss of independence had left her feeling like a burden to her two children Alexander, 19, and Olivia, 18.
She said they have been ‘amazing’ with the youngest now her carer but that she was worried it was stopping them from being able to enjoy themselves.
‘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 her a much-desired taste of freedom.
WHAT IS A CHIARI MALFORMATION?
A Chiari malformation (sometimes called an Arnold Chiari) means that the lower parts of the brain have been pushed downwards towards the spinal cord, so they are below the entrance to the 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.
Usually, the lower parts of the brain are contained in a space within the skull, above the level of the foramen magnum (opening at the base of the skull).
In people with a type 1 Chiari malformation, these brain parts are pushed downwards, because they are too big for the skull.
When parts of the brain are pushed out of the skull towards the spinal cord, this can cause pressure at the base of the brain.
It can also block the flow of cerebrospinal fluid (CSF) to and from the brain.
CSF is a clear fluid that surrounds and protects the brain and spine, and also carries nutrients to the brain and removes waste.
Many people with a type 1 Chiari malformation will not have any symptoms.
When symptoms do develop, they may include headaches, dizziness, neck pain, numbness, blurred vision, swallowing problems insomnia, depression, feeling sick and vomiting.