What seriously annoys me about having acquired Cranio-Cervical Instability (CCI), is that people who have suffered a head and neck injury, or a whiplash injury are often not diagnosed with CCI. I wonder if CCI is even considered sufficiently at the time radiology is taken! Even though I developed a progressive neurological decline and persistently (and consistently) reported the symptoms, STILL I was not evaluated for this type of injury – incredible!
It was only when I personally took it upon myself, to find out what was going wrong in my body, some 5 YEARS after my accident that this possibility even arose, when I discovered a descrepency. I’m astounded at the lack of appropriate attention I received, both at the time of my accident and subsequently. I did a search on Google some years ago and, the results were astonishing, it was quite a high percentage of this type of injury that was missed. So if they know about it, why isn’t something being done about it!!
Consider the fact that many people with blatant hypermobility, when you think about it, are quite possibly suffering from CCI (even without having suffered a substantial injury to that area) as the head is only held on by ligaments, yet I bet they’ve never been assessed for it.
There are at least a dozen tests that have been developed over the years to supposedly test for this but, up to 2007, no particular test captured every possibility/type. The most popular is Powers but there’s also Dublin, Wholeys, Kauffmans, Lees, and several more that I’ve applied to my xrays and scans. I tried a whole boat-load of these against my xrays and scans and I passed most of the tests, which indicated I was ‘normal’, I only failed a couple. So two methods, out of all of the tests available, would have caught my CCI, if only the hospital had applied those methods, I wouldn’t have had to go through all of this hell and I probably wouldn’t be disabled today.
In 2008 I discovered the Bolognese/Milhorat method, mentioned on this website, this is a far superior method albeit more complex and requires mid sagittal MRI’s in neutral, flexion and extension – but if I can fathom it out, I’m sure trained radiologists can!
I think it is important that those who are blatantly hypermobile, who have neurological or dysautonomia symptoms, should be checked for CCI and if found, at least imobilised with a philadelphia collar until it can be resolved, in order to avoid more permanent disability.
Barbara
(UK)