Headache MRI stuff

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.

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5 Comments

  1. I had terrible headaches, and like you, have a long thin neck. Figured out that I was putting huge strain on my C1 because I only pivoted my head from there. So I did 3 months of PT, and the PT guy had a doctorate and diagnosed me with underdeveloped striatus muscle. This is the muscle that moves your shoulder blades up. I was using my large shoulder and neck muscles to move my shoulders. The strain was affecting a nerve. Anyway, 3 months of cervical message and exercises did help a lot. It is amazing what incorrect musculoskeletal posturing can lead to. I would investigate the use of a doctoral prepared PT person to review your movements and make sure you don’t have a movement disorder–which chronic pain sufferers often have due to posturing.

    • I am going to definitely look into some PT, for my neck and my whole body. My muscle atrophy is pretty bad and no matter what I try to do it doesn’t seem to help. I just end up really sore. I can’t get out of the rut. I am also going to get another opinion about the chiari. The particular specialist I saw told someone else the same thing and they ended up needing emergency surgery 6 months later, so I’m not going to stop pursuing it until someone can make me feel comfortable about their findings.

      • Keep going, it is miserable to wake up every morning dreading the day. I have a physician friend who decided to change and become a medical acupuncturist (not Chinese, medical, they are very different) and she is recommending it for my chronic vertigo and headaches. I may look into it, if it helps me I will let you know. I do know that the PT, while hard, was the best thing I ever did–but go only with someone with a doctorate and preferably associated with a neurology group. The difference is amazing. Hey, someday post on how you found out about your Addisons (or is it somewhere in your blog). I have excessive thirst and pee all the time and feel bad when I am stressed out–even collapsed and vomited once. Wondered what your symptoms were.

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