Good Morning Theresa and welcome to our CM family :)
low-lying cerebellar tonsils, Cerebellar ectopia and Hindbrain hernia are all terms used to describe Chiari Malformation type 1.
It would be advisable to research any Neurosurgeon you will be attending for treatment. Chiari is not well understood by most Doctors, they dont see it very often in practice.
Cerebellar ectopia is a term used by radiologists to describe cerebellar tonsils that are "low lying" but that do not meet the radiographic criteria for definition as a Chiari malformation, some doctors call this Chiari 0 but this remains controversial and Chiari 0 is not recognized by many Doctors. The currently accepted radiographic definition for a Chiari malformation is that cerebellar tonsils lie at least 5mm below the level of the foramen magnum. Many people with borderline Chiari have debilitating symptoms and have problems getting treatment.
You will need to have a full spinal MRI to rule out things like a Syrinx (Syringomyelia) Tethered Cord and other related conditions. One of the problems with Chiari is CSF obstruction due to over crowding, CSF is the fluid around the brain & spinal Cord and if it is obstructed it can cause many problems. A CINE MRI is a scan that will show any CSF obstruction.
It is very difficult for me to determine the mm from my view as I am seeing it on my tiny laptop screen lol : ) I also am not familiar with the exact methods used by radiologists to make those measurements.
However, I see that your neck seems to curve back rather abruptly. Did they state anything about your neck curvatures? Or any other findings in the report?
I agree with rod, you need to get full mri's of the spine and csf flow study, but I would add to do cine mri or flow study in flexion an extension positions so they can make sure you arnt having positional flow obstructions as well.
Good luck to you at your appointment and don't worry too much, you might trigger headache. Stacey
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