Retroflexed Odontoid, no herniation, CSF leak ruled out! :( What now?

Hi, it’s been a while since my last post.

A neurologist strongly suspected a CSF leak due to the semi positional nature of my symptoms, but recently, this has been ruled out. So I’m a little at loss here.

Someone pointed out though that it looks like I have a ‘‘retroflexed odontoid’’ and this is a lying down MRI, rather than an upright one. My image is on the right, with the red arrow…

What are your thoughts? Can it still be Chiari? My symptoms gradually took more hours lying down to 100% go away, now that time has increased so much, that while I do often wake up feeling much better than just before I go to sleep, my symptoms are not 100% gone anymore…

Hey Yota,
I can understand why you’re at a bit of a loss. If the neurologist has very little in the way of answers that only makes the whole process even more difficult. I have a VP shunt and had issues with CSF drainage via the shunt. If I laid down my ICP level would increase to concerning levels. And then the best advice one neuro could give me was (and I quote) “Well, don’t lay down for too long…” :open_mouth: :roll_eyes:

Now, as for your images. I’m not a Dr, nor am I a radiologist. What I can tell you is that’s an image of a human skull, other than that, I’ve got nothing. When it comes to neurology imaging there are many things that need to be taken into consideration. It takes dr’s years of university training to properly read, comprehend and report on such scans. I’d strongly recommend you obtain a 2nd opinion report from someone FULLY qualified in interpreting those images.

Hope it helps
Merl from the Modsupport Team

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I agree with a second assessment by a neurosurgeon. i do not believe that neurologists nor radiologists have the expertise in determining Chiari and symptoms that could be arising from the physical nature of Chiari based on reading MRI images.

Plus, make sure that you get an opinion on the horizontal view of the foramen magnum. Does your MRI report even mention findings from a horizontal view? We are all familiar with the classic saggittal view that you have posted here, yet need to understand that Chiari has a three dimensional physical nature and needs to be viewed and assessed as such.

Good luck!