I started seeing my (now former) neurologist at the end of '06. Pretty much the only positive thing I can say about him is that he filled out the RFC which allowed me to get disability. Other than that, however...
I've been trying to get in to see a neurosurgeon for the last three years. That's when I found out the guy who did my last two revisions relocated to CO (I'm in TX). I finally managed to see New Guy about two weeks ago. He looked at my MRI from a year ago and said "You do realize you have two fused vertebrae in your cervical spine, right? You do realize that it looks like you have a syringomyelia in your cervical spine, right?" Um, no...total news to me. So New Guy wanted me to get a new MRI done to confirm what he thought he saw.
I went home and looked up "syrinx" and "syringomyelia" online. I've been having numbness in my extremities (sometimes one arm or leg, sometimes both, sometimes one side of my body) for at least two years, which would be nicely explained by the existence of a syringomyelia. The last time I mentioned the numbness/pain to my (now former) neurologist, I was nearly in tears. I asked him if there were any further tests that could be performed to determine why I was in so much pain (at this point I had no idea about the fusion/syringomyelia). He very flippantly told me "No, I don't think you need any of those tests...but I can send you to a pain management clinic, if you like."
Today I had a follow up visit with the neurologist. I mentioned New Guy's suspicions about the syringomyelia. He left the exam room and was gone for a while, while he looked at the old and new scans. Hubby wondered why he left the room to look at the scans, since there was a computer right in the exam room. I told him there was a distinct possibility the neurologist might look at the scans and blurt out "Oh, shit!", and he didn't want an audience if that occurred.
The neurologist came back into the exam room and rather angrily told me that he saw no evidence of syringomyelia in either the old or new scans. He claimed I'd never mentioned the numbness in my extremities in any of my previous visits, and he knew this "because he always writes everything down". I quite calmly said to him "Maybe you forgot to write it down?" He snapped, and told me he didn't like the fact I was "such a difficult patient, always accusing him of things, and he didn't like to 'fire' his patients but in this case he felt he had no other choice." He curtly said goodbye and left the room.
The important concept to keep in mind here is that, just like any doctor's office, the neurologist has a form you fill out at the start of your visit, asking about any new or worsening symptoms. I've been making note of the numbness in my extremities for at least the last two years. So even if he did *not* "write everything down" in my case, *I did*. So A, his memory's not as perfect as he thinks it is, B, he never read the patient form, or C, he never transcribed the information on the form into the practice's computer system. Which leads us to D, none of the above scenarios is my fault.
Now, is it possible that the neurosurgeon is just a cut-happy guy who likes to get paid for doing a gazillion possibly unnecessary surgeries a year? Of course it is. But I'd take the word of a guy who makes his living by physically poking around inside somebody's nervous system over the word of a guy who grasps the basic theoretical concepts, but was too chickenshit to take the extra step and actually become a neuro*surgeon*.
If "being fired" had to happen, at least it happened at a good time. Hubby's office is changing insurance plans, so I'll have to see who's on the new insurance's provider list. And I think I've given up on the idea of seeing a local provider, at least for the complicated "zebra" stuff. I'm gonna try to find a neurologist in the TX Medical Center, which is about a half-hour car ride on a good day, but at least those guys are used to dealing with zebras like me.
ETA: I have an appt with a new neurologist! I went to my neurosurgeon's practice webpage, looked to see what neurologists were affiliated with his practice, picked a name and sent her an email. She wrote me back right away and told me that she doesn't see pts (she's a researcher), but she gave me the contact info for a good neurologist. His office just called me, and now I have an appt set up for the end of July. Yay me! :-)