Your posts are very helpful and I wonder if you could give me some additional advice. My problems started after a fall where I hit my head on a door but I couldn’t get anyone in the medical profession to realise just how much head, neck and left shoulder pain I was experiencing afterwards. Neurosurgeons just picked up on a ‘retrolisthesis’ at C3/C4 which showed on my scans. As my pain and other nervous system symptoms continue to escalate, I have now been advised to have an operation to correct the C3/C4 injury but have always felt that my problem was higher up at the CC junction because my head feels as though it is sliding backwards and forwards on my neck and injuring something over and over again. I have had an upright scan done privately but can’t get a diagnosis based on this even though the radiologist said it showed a Chiari 0, cerebella tonsillar ectopia and an abnormality at the top of the brain stem. Do you know anyone in the UK with knowledge of CCI who is able to look at my Upright MRI? I know you had to go to the Chiari Institute to find out what was happening to you. I have it available on a CD.
After reading your advice, I have asked the hospital in London for a Philidelphia collar and they have offered a Miami collar. Is this is the same thing? I’m also due to see a Neurologist this week at the hospital to check my autonomic nervous system and wondered if you have any advice about questions I should ask to find out if I have EDS.