Yesterday I saw a NS, who is also a neurosurgery professor. I was plesantly surprised about him. He seemed very sensible and down to earth. My mom thought he would be arrogant, but he wasn't. To my surprise he wasn't dismissive of Chiari. To no surprise he said, he would only preform the surgery if he is absolutely sure the Chiari is the priamry cause to my symptoms. I absolutely understand that. What I didn't find comforting, was that he put all of his trust in the cine MRI. If that would show a disruption of csf flow, he would preform the surgery. I also understand that, becouse the purpose of the Chiari decompression is to restore the csf flow.
I asked him about my back pain that I get 8/10 times when I lay down. I said I got an x-ray and there is everything ok there. He said " of course there's notheing there!" He was pretty sure the back pain was due to the tonsil pressing to the spinal cord or brainstem(whichever part that is).
I didn't describe my condition as well I would have wanted. I started with the wort in my opinion, that I'm so tried and my muscles are so weak, it's hard to go to the store or do any basic, small things at home. I thought I explained myself well, but to my surprise the dr later still asked: "Do you work or study?" Then I explained, I do none of those, because I barely move. When I was seeing a neurologist, she asked me if I work or study in my 2nd appointment with her. The 2nd time I tell her how bad I am, she still has no idea. After I said, I do nothing, absolutely nothing, she responded:"oh, then you're a *latvian equivalent to housewife*." Was she even listening? I can barely move and she still thinks I clean and cook! This just shows how everyones perception differs. I need to find a better explanation of how low my quality of life is, because the best I have now still doesn't deliver the message to those who haven't been there.
I will take the cine MRI. Maybe it's more useful than I think. Either way, I'll probably see another NS. If the cine MRI seems fine, I'll go to to every specialist I can think of to find if there is anything else. And if they won't find anything, I'll maybe push for Chiari decompression. I really can't imagine being like this for the rest of my life. Because this doesn't feel like life. If there is something that can improve my condition, I'll find it. I have no doubt of it.