I have an appt. with a neurosurgeon. Do you have any advice?
ttpookinz, I am leading a charge toward ruling out any possibility of medical management prior to considering surgery. My MRI didn’t look that dissimilar from yours, and I was wearing a hard collar most of the time for almost 2 years. Ugh. I couldn’t even turn my head (or my eyes, often) without feeling as if I was passing out. Horrifying. It can be hard to judge from these “flat” images just how much CSF is passing through that canal between your odontoid and your spinal cord. And am I right that you don’t have an MRI of your head to show us? That can be hugely helpful. Many of us develop high intracranial pressure and the fluid collects above the brain (visible on MRI). Did you fill out a symptoms checklist? That can help us figure out what is going on. My son and I were told to have numerous surgeries: neck fusions for CCI, Chiari surgery for Chiari zero, and even brain shunts. We were miserable, but I felt that something was being missed because we both got so much worse with viruses. Surgery is permanent and I hear the horror stories of non-healing and endless pain in many of us. We opted for a Diamox trial which eliminated our symptoms OVERNIGHT. I had gotten to the point where I could not even hold up my own head! And a PILL reversed it?! It took off just enough CSF fluid to allow my brain to float easier, it took off some fluid pressure on the brain stem, and my son and I (and my daughter, who also takes Diamox) remain surgery free today. If the odontoid is not stable, does that mean it can move forward and allow the CSF to pass through easier? Maybe. I went through so much research about removing the pannus, etc about 10 years ago! None of it was necessary, fortunately. Once, when studying “normal MRI’s”, I came across one that many of us would call CCI. The patient was asymptomatic. Amazing, I thought. Perhaps we are studying the clivo-axial angle TOO closely? Perhaps it can change? I think it would be unconscionable for a surgeon to diagnose CCI and recommend surgery prior to a trial with Diamox (or other meds to lower CSF production). It is too successful in too many of us! Just my two cents, my friend. 😉 Gentle hugs…