Following my accident in 2002 (a backwards fall onto a low stone ledge) I developed a slowly progressive, seemingly neurological condition. My list of symptoms, some of pain, some of discomfort, some altered sensation, some malfunction, some diminished function, etc., seemed to be expanding every week. No-one in the NHS seemed to have a clue (or a care) what was going on, it would seem that, as soon as you become complex, you get tossed into file 13 (the bin!) and passed across to our learned psychiatrist friends! Luckily I had photographed or videoed several of my symptoms, so they couldn’t insist they were ‘imaginary’ and, as a consequence, they passed me back across the fence, telling my doctor to look for the physical cause. I was referred to a neurologist but passed their tests so nothing was done.
I had no option but to start my own investigation in 2003, when I developed swallowing problems, to try and get to the bottom of it, before it got to the bottom of me! Using the internet (marvellous!!) I input many of my symptoms and came across a website that seemed to have many of them already listed – it was on an analysis document that compared the symptoms of Fibromyalgia/Chiari/Spinal-Compression (check this out on http://www.nfra.net/Symchart.htm)
I scored highest from the ‘Chiari’ set of symptoms but I dismissed it at the time because they said it was hereditary and I didn’t know of anyone in my family that had been diagnosed with it. Years later, having found no joy elsewhere, I revisited the theory and when I finally got from the UK to the USA in Nov 2008, to be assessed by The Chiari Institute, I was told that my Cerebellar Tonsils (lowest part of hind brain) were abutting my Foramen Magnum (opening at the base of the skull where your spinal cord comes out). This did not quite meet the criteria for true Chiari 1 Malformation, which has to be herniated by 5mm and mine was only herniated 3mm or so.
Basically I had what’s called ‘Cerebellar Ectopia’, which is a term they use, when you obviously have some degree of hind-brain herniation but not enough to fit the Chiari 1 Malformation criteria. I’ve heard some refer to it as ‘Chiari 0’. Interestingly enough though, this fits in with Dr Diana’s theory, in that, if pressure was building up above the brain, then the brain would be pushed downwards – through the Foramen Magnum!
The result of this ‘displacement’ of brain is that it ‘bungs up’ the Cerebro Spinal Fluid (CSF) pathways between the skull and the spine, restricting the natural flow of this fluid.
I have heard that some of you, who’ve been lured into having a lumbar puncture (DON’T DO IT!) have come back with a ‘normal pressure’ result even though you have symptoms of raised intracranial pressure, maybe you have an underlying Chiari 1, Chiari 0 that has ‘bunged up the plughole’ so to speak and this is why it’s producing a ‘false negative’ result.