J, sorry you are here, but I hope we can help. Gosh, you have some homework cut out for you! Sorry to add to the load with a question or two.
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I have also had surgery for Chiari 1 malformation which I had hoped was the cause of this but I am sure
now that it isn't..."
Can you talk a little bit more about the basis of your conclusions? And more about the brain surgery?
Do you happen to know if your CM was congenital? I found an article recently which may be helpful, though this may be old news for you…
For what it's worth, we've seen C5-6 problems that LOOK much worse, but patients are not symptomatic. The difference between them? A diagnosis to explain the source of disease. Or, more often than not, no reasons at all -- just speculation and tentative conclusions. There continues to be more questions than answers in many patients' situations. : (
I look forward to learning more. I hope we can give you the support you need in the days ahead.