Hello,
I am 44 years old and found I had a Chiari Type I in 2009. Actually, the MRI I had for some sort of neurological symptoms had it documented there, but I was not told until 2013. I had six MRI's for various neurological symptoms between 2009-2015. The 1st scan read "Borderline Chiari Type I", the 2nd scan in 2009 read "Stable Chiari Type I, cerebellar tonsils at 5mm", the 3rd in 7/2015 read "Chiari Type I, cerebellar tonsils at 7mm". I had that scan prior to being seen by a Chairi specialist in early September. She had ordered a CSF Study/MRI. That scan can back directly to me (via the Patient Portal) with "Cerebellar Tonsils at 3mm. Does not fulfil diagnostic scan measurements for Chiari.
I've had unexplainable, life altering neurologist symptoms since I was 16. I thought I had finally, FINALLY found the answers!!. How is it now that I finally find a "specialist" my Chiari tonsils lie at 3mm? 3???? I just had one done two weeks before that and they were at 7mm. Does this happen? What is going on here?
I remember my Dr. telling me that the our anatomy changes as we age and that the medical cutoff for most diagnoses of chiari malformation is 5mm but that as we age the brain and cerebellum/tonsils naturally shift on their own and it's not uncommon to see the tonsils recede closer to where they are supposed to be. I really don't know any specifics on what age that stuff happens but I do know that regardless of all the stuff we've talked about at my appointments that she really holds true to checking the CSF flow with a cine MRI to decide if the decompression surgery is worth it. Have you considered a second opinion or asked to check the flow of your CSF?
I know what you mean about finally having hope that there is an answer and then all of a sudden feeling crushed after the appointment. I had that appointment a couple weeks ago where everything seemed to line up with symptoms and MRI scans but was told that even with the decompression surgery, that my continual dizziness would most likely still be there. It's a crazy ride, isn't it? But the good news is you're not alone in your symptoms and in your experiences with doctor appointments.