- This topic has 3 replies, 3 voices, and was last updated 3 years, 8 months ago by .
- You must be logged in to reply to this topic.
Has anyone had an upright MRI to look for Chiari/brainstem compression?
I had an MRI lying flat, which was normal, however my symptoms of severe POTS, presyncope, high BP, headaches and nausea are absent when lying down.
I and other family members have features of EDS (although no formal diagnosis) and I believe such abnormalities will sometimes only show up when gravity is in effect ie in the upright position.
I will have to pay privately for this scan in the UK which is over £1000.
I would love to hear experiences and opinions from anyone who has had, or is considering upright imaging? Did it help you & show anything that was not obvious lying flat?
Hi Bombshell, I wanted to mention that my thoughts on upright MRI’s have changed a bit over the years. I have found that most of us with these Chiari-type symptoms DO have crowded brain stem areas,
but it is generally secondary to a propensity for high intracranial pressure (both pushing the brain down a bit and putting some direct pressure on the brain stem. The position (upright or not) is less important than whether intracranial pressure is normalized. We can reverse most small Chiari’s with Diamox and find that this propensity for high pressure is reduced when we can locate and treat the underlying cause of illness. In other words, it’s not generally “just” an anatomical issue. This means that if upright MRI’s are expensive or difficult to obtain, it may not be worth it! I hope this helps!
I was living in the UK and was diagnosed with EDS 3 and POTS and I had an upright MRI in London. Even though I had symptoms of high ICP among other things even an upright MRI only which was designed to test CFS fluid didn’t show any issues. It might not be worth the money if you have to pay for it.
thanks for this valuable information.
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross