Hi again Samuel,
I cannot see the syringomyelia in the shots you’ve published on this website, where did the expert say that you had it, I assume it’s lower down your spine, if it’s that that’s affecting your legs ?
You also asked me about doctors in UK, they are probably the same as in Germany, I’ve not found one who’s at all knowledgable in this condition. There are certainly no surgeons I’ve found willing to take me on, either locally or in London, the only one eager to help was at The Chiari Institute in New York. Dr Milhorat there told me straight away, after all the tests and assessments, that I’d need fixation surgery.
The retroflex odontoid is mainly visible in the mid sagittal MRI shot usually (thats what would be seen if you were chopped in half, in a vertical cut from the top of your head passing down the middle of your nose, for those who didn’t know – sorry for the macabre description!).
Regards
Barbara
(UK)