odontoid

A lot of that hits close to home. Have you been able to do anything to address your symptoms that has really made a difference? And did you have surgery for the Chiari?

My doctor says that, while my brainstem is too far forward, he would not classify it as Chiari. Not quite sure of why, but happy to rule something out. I'm trying to schedule with a geneticist at Hopkins now, but their department is swamped and moves slowly. I'm now looking into other genetics departments that might be able to see me sooner. Which elements sound familiar to you? I'm so sorry if you're going through the same thing, because it really sucks.

I've had POTS since I was a kid, and had mostly gotten over it by age 21. So it wasn't in the forefront of my mind when I began experiencing a pulsing, stabbing pain in points all over my body a little over a year ago. After being diagnosed with Lyme and then fibromyalgia by four different doctors, I went back to my childhood neurologist, Dr. Rowe at Hopkins. He disagreed with the fibro diagnosis, and had me get an MRI. That MRI revealed a retroflexed odontoid that pushes my top vertebra forward, kinking my spinal cord and putting significant pressure on my brainstem (which is also hangin