I have decided...
I don't care.
I don't care anymore what a neurosurgeon thinks. I've seen six now, and they all come up with something different. Some brush me off as a pain in the backside, i.e. "I've never seen anyone like you, with your complaints, after a Jefferson Fracture."
The first neurosurgeon, the one I saw when I was brought into the ER 5.5 years ago, said later on, "You've healed straight and fine. Your neck is straight and fine."
The second neurosurgeon told me, "You're lucky to be alive. Get off the internet and get on with your life."
The third neurosurgeon found that my neck (C1) is still broken, is non-union. He told me that all my ligaments must have ripped and been broken when I broke my neck. He told me he could help me. One surgery and three years later, he told me there was nothing he could do for me, without having done a single thing to my skull base/upper C spine.
The fourth neurosurgeon was the one who yelled at me and told me that he'd never seen a patient come back to him after suffering a Jefferson Fracture and have the complaints that I have. He told me he wouldn't do anything for me and wouldn't take someone like me as a patient because he had never seen anyone like me.
The fifth neurosurgeon talked to me for 20 minutes, told me he would not take care of me if I had a surgery out of state and needed emergent help, and called up the referring doctor (the hematologist who sent me to him) and complained to him about sending me there and wasting his time.
The sixth neurosurgeon is the one I am seeing now. He's probably a good guy. He might have some good observations. But I'm past caring.
I got a copy of the report he sent my primary after seeing me. I read it, saw things he got wrong, saw new things, like the fact that in my NY imaging, he had not seen any slippage in the joints between C1 and C2 when I held my head in flexion during the xray. But, then he did see some slippage in the xrays he had done, in the same position, last month after I saw him for the first time.
This would explain a lot, when I think of how I already have been diagnosed with spinal stenosis in that area (narrowing inside the spine where the cord runs), and if a bone (C1) is slipping forward when I bend my chin toward my chest (look down), I can "see" how that narrows the area for the cord even more and likely compresses the cord. But then...neurosurgeon #3 said I had no brainstem compression from the C1.
Oh, I forgot Neurosurgeon #3a, as he operated on me with NSG #3, and he was the one who diagnosed me with having also suffered dislocation of the occipital condyles and said I had "a chiari, but not Chiari Malformation." I understood what he meant. This NSG is actually #7, then. And he has seen thousands of cases of Chiari. He is one of the leading experts on Chiari in the world. If he said I have "low lying tonsils of the cerebellum" ie "a chiari," then I believe him.
NSG #6 doesn't like NSGs #3 and #3a (aka #7), so he wrote out a special paragraph in the report saying I do not have Chiari Malformation, which I already knew. But NSG#6 didn't let me speak too much to explain such things to him. I didn't have a chance to tell him I have dural ectasias in the lumbar area, too. I mean, I told him, but he talked over the top of me, so I know he didn't hear it.
All of this suddenly has tired me out, and I've become apathetic about it. I don't care. I've stopped hoping for a surgery to fix me. I'm at a place where it is what it is.
This attitude might all be temporary, but that's how I've been feeling lately.
And it's quite a freeing sensation. To not put so much hope into a man (NSG). To not have any expectations.
Maybe it's about time. But it's bittersweet...saying goodbye to hope.