Today was the new neurologist appointment. The second opinion appointment. The extremely long awaited appointment. The I-was-so-nervous-I-had-dreams-about-showing-up-naked appointment. Sorry, I'm done now.
I showed up 10 minutes late because I forgot to grab my MRIs this morning and realized that it would be fairly worthless to see a neurologist without any imaging. After breaking a multitude of driving laws (that's not including my expired tags (I have the new ones, I just keep forgetting to put them on) or total lack of a brake tag), I got from work, to my house, to the doctor in under 30 minutes. Yes, I am impressed with myself.
I waited very briefly (one of the benefits of arriving late?), and was taken back. And get this y'all, he did a neurological exam. Holy shit. Who knew neurologists did this? My
fired former neurologist didn't, um, like ever. Everything was essentially fine (still have the upward Babinski, still have no grip strength in my left hand) so we talked about the headaches for a while. He indicated that having headaches for 9 weeks is unacceptable. Who knew?
He looked at my MRIs himself (again, practically revolutionary compared to the former neuro) and said that the one thing he observed is that unlike a lot of people who have the chiari surgery, my cerebellar tonsils haven't lifted up at all. It's not the main goal of the surgery, but it happens in a number of successful surgeries and didn't in my case.
I also have a large accumulation of CSF in the back of my head, which may or may not be why my tonsils haven't retracted, and which isn't completely abnormal, just something to watch. He's ordering all my previous MRIs to compare and even my EMG test results because also, the fact that I still have no grip in my left hand is also of apparent concern. Again, I say, who knew?
So what we're doing is trying another prophylactic headache medication called Neurontin, similar to Topamax in the mechanism of action and the way you taper up, but of which the graduated dose is so large it could tranquilize a seizing elephant. It is also supposed to have far fewer side effects, which is good because oddly, I don't want to have to buy a new car battery for leaving my headlights on 400 days in a row. He also prescribed Fioricet, which is a mix of Tylenol, caffeine and a tranquilizer (hello!), and which is supposedly wonderful.
I am going back to see him in January to see how things are going, but have been warned that the Neurontin takes a while to work and to not expect any miracles. He's going to track down all my records and see if he can't come up with some sort of reasonable differential diagnosis for why I've been in pain for 9 weeks.
I know I swore I wouldn't get my hopes up about doctor's appointments anymore, as it has only led to great disappointments, but well, I'm hopeful. And I can honestly say that in the last 9 weeks, moments of hope have been few and far between.
Here's to hoping for more hope.