Thanks Barabara for all the info. If you have all the Dx for CCI, Chiari, etc. are you wanting to have a decompression and stabilization,IF you could get National Health to pay for it? Did you go to TCI in NY for your imaging? Would you/are you considering paying for the surgery out of pocket? I can’t imagaine living in the neck brace 24/7 as a viable way to live if there is something out there that can help this?
The Chiari Institute (TCI) only recommended fixation surgery, as my cerebellar tonsils were only low-lying and it was thought the fixation itself would resolve the issues. If I could afford to go to TCI, I’d let them do the fixation but unless I sold my house I can’t afford it. I’ve had no joy getting it done on the NHS, no, nobody seems to want to do it, so I’m stuck in the collar. It being a very dangerous and specialised operation, TCI has a very good survival/recovery record, whereas we don’t have that same expertise (or success) in the UK.
I went to the Manhasset Imaging Centre for my radiology but it was Dr Bolognese, Dr Nishikawa and Dr Milhorat’s team at TCI/Northshore Hospital who confirmed the Craniocervical Instability. I paid for a procedure called an Invasive Cervical Traction but I wouldn’t recommend it. I think the anomally can be spotted on Neutral/Flex/Ext MRI’s using the method described in the paper on this website.
Barbara
(UK)