I would like to start off with a general question. How is it dx can differ so much on ACM1 between radiologists when the outline for criteria is supposedly clear and affixed? I find it disheartening that a neuroradiologist can define something as insignificant without proper hx or research into other studies done such as CSF studies.
I was diagnosed with mild ACM1 in 2002 - although my herniation on MRI only measured 3mm on the rt and 4 mm on the lft. Luckily I am very up front and some would say pushy and I had a wonderful neurologist (who is now retiring FROWN) and a CSF study was done at the recommendation of a neurosurgeon. Even with the minimal tonsilar herniation I have restricted (almost non existent) csf flow posteriorly at the craniocervical junction. Fortunately or unfortunately depending on how you look at it "typical chiari type headaches" are my main complaint so I am nonsurgical. The problem is my symptoms are progressing and getting worse. I still have 24/7 pressure headaches with reoccuring severe occipital/frontal headaches that are becoming more frequent (used to be 2-3 times a week now almost daily) I have some mild swallowing difficulties/ sleep disturbance (for which I take medication) severe fatigue.
As I said my neurologist is retiring so we repeated the brain and cervical mri - with no change and he listed the tonsilar ectopia as not significant. There are not any MD's inmy area familiar with ACM1 I was lucky enough to find my current neurologist willing to research and listen. I am at a loss as to what to do.