Shortly after an really bad accident with a head injury, I had an MRI to rule out a tumor or stroke because I kept have episodes of really unusual visual problems. The MRI showed a 5 mm cerebellar tonsillar herniation and I was told by a neurologist that it would never be a problem and to pretend I'd never seen the radiology report.
It's kind of a long story, so I will give the bullet points:
About the time the intermittent blindness started, I began having excruciating headaches in the back of my skull (before the accident, I had never had headaches, no migraines, nothing). Upon advice of the ER doc, I saw a headache specialist who dxd me with post-concussive migraines. I know people with migraines and my symptoms did not line up with theirs. I saw a pain specialist who dxd me with occipital and sub-occipital neuralgia. He gave me steroid shots in the skull which last about a week and decrease my skull pain by about 70% (which I'll gladly take), but he says that I shouldn't need any more and if I'm still in pain, it's stress-related. He also mentioned that my reflexes were all "brisk" which had to do with the Chiari, but that I wasn't "sick enough" for my pain to be associated with the herniation--despite the fact that the skull pain is absolutely immobilizing.
I guess my questions are: does anyone else with a Chiari have occipital pain? Are they related? How do you treat the occipital pain when you can't keep getting shots (I was told there is a risk of hematoma if you get too many)? It's just tough to sort out because everything wrong from the accident is all confined to a very small space (I had a concussion, Chiari, occipital problem, c4/5 herniation--so many problems for a tiny bit of head space!). One more note: in the MRI that detected my herniated disc, there was no syrinx (sp?) if that helps. I also don't have any other genetic issues in myself or my family.
I'd appreciate any input here. Thank you!