Chiari Online Support Group

The saga continues

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 :frowning: 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!

We found out a year ago that are son has chiari are neurosurgeon is at the mayo clinic here in Minnesota and he actually told us that chiari can cause you to have sleep apnea because it causes you not to have control over certain things are little one had trouble even swallowing food your not alone and you know your body better maybe try to get in with a doctor that specializes in chiari i know that can be difficult we drove just over 3 hours just to make sure are son got to see the best doctors are doctor didn’t even know what chiari was.

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Thank you Nicki08

I have found a Chiari specialist about 2 hours away. Just waiting for the referral to go through the system so I can get an appointment. I have been reading about Chiari and sleep apnea. What I have not found is whether Chiaris contribute to shortness of breath on exertion and when moving in certain positions (bending over, reaching up). I have had this also for 5 years and they do not know why - not my heart or lungs they say.

Sad your wee one has Chiari symptoms already but so lucky they have you staying on top of it!

All the best