Well after a few days of awesome phone tag, partially my fault, I heard from the neurosurgeon. According to the cine MRI there is no blockage in flow of CSF. He is still sticking by his opinion that I don’t have Chiari despite having “low cerebellar tonsils”. And he is also sticking with his pain explanation that I have weak neck muscles and a long thin neck trying to support a regular-sized head, and that I need to continue isometric neck exercises. Needless to say I’m still confused on how that can be possible, because I feel like it goes against everything I’ve experienced, but I’m also thinking about the future and how to investigate other causes for my pain. I’m still planning on being involved in the Chiari community because I’m not sure I completely agree with the NS at this point (mind you he is one of the best chiari specialists there is, ever. So I feel like an ass questioning him). I still have wonky symptoms and bad headaches that I can talk about with fellow chiari people. I still need to vent about my Low-tonsils-with-headaches-but-not-chiari situation.
Not sure why they’re called tonsils, but they’re not your throat tonsils. It’s just a section of your brain. Just for clarification.
If I really don’t have chiari, I’m interested in being screened for neuropathy in the trigeminal and occipital areas. The headache pain I have is so intense, and really hard to treat once it hits. I still don’t think it’s migraines. I don’t get auras, and I always have neck and back involvement. I’m just hoping it doesn’t take them 900 years to figure out what the fuck is going on because in the mean time, I have a headache every day. Yeah.
My rheumatologist wants me to see a neurologist to screen me for neurological disorders that could be causing my widespread pain/weakness/GI difficulties. She’s not sure if the Benlysta just isn’t helping my lupus or if there’s another cause to all the issues I’m still having. I’m worried about what that could mean for me. I don’t really want to be diagnosed with something else. But on the other side, if they figure out what it is, maybe they can treat it, and I won’t have to be crippled by pain on a daily basis anymore.
I don’t know. I’m just tired of the roller coaster I’m on. And I’m tired of being in pain. I can’t keep up with my hobbies and my social life is nil because people don’t have the patience for me. It’s getting old.