I had a brain MRI Monday - my first in 6 years. Today they called and wanted to do additional images. Turns out the radiologist was confused because they thought the order was incorrect as they thought that Chiaris have NOTHING to do with respiration (I am following up due to chronic respiratory failure and severe sleep apnea (looks like central per pulmonologist, but waiting for sleep study). So instead of looking further at the tonsils, the radiologist wanted to re-image the cavernous hemangioma in my right temporal lobe. Which my pulmonologist didn’t think would affect respiration. Furthermore the tech said the radiologist did not see a Chiari at all! Wow, can they disappear?
How fun was it for me to work with the radiology tech to look at the slices on the MRI images so I could point out where the tonsils are measured in reference to the foramun magnum. What I gathered is that the radiologist (and I think he is not alone) thinks it is ONLY a Chiari if the tonsils are pegged It was not fun, but I am so glad I have the wherewithal to do so still. And I like science and I am a technician so this stuff isn’t offputting, I just wish it wasn’t mine I was having to be focused on at this level.
Anyway, the tech measured the tonsils and he roughly got between 5.1-6.2 left and right, respectively. So definitely within the 5mm range that has been reported multiple times over the years, taking in to account measurement tolerances of 1mm in either direction.
Let me add, I live in a small remote area in VT with a very small hospital with a not so great reputation. I will be following up with a larger teaching hospital in NH.
Frustrating and exhausting, but I will stick with this process until we have found the underlying cause of my new issues which have become debilitating. If not the Chiari, lungs, or heart, or psychological (I got a clean bill of psych health AND we have plenty of objective evidence now), then what is making me stop breathing at night (70 events/hour and 90% of the night my O2 is 87-62%) and struggle so much during the day.
So glad I found this support group, I hope I am not over doing my welcome here. Such a tough time. Thanks all!