Minimal Cerebellar Tonsillar Ectopia and symptomatic

[SuzBT]

Hello! My recent MRI findings review "Minimal cerebellar tonsillar ectopia," which I'm learning likely refers to low laying cerebellum, as opposed to  cerebellar tonsil herniation, which would imply a clear Chiari diagnosis. I saw a neurosurgeon at Mass. General Hospital in Boston yesterday and left feeling almost completely blown off. My symptoms (which have been increasing for 1-2 years) match many of the "classic" Chiari symptoms: headaches, consistent neck/should pain, vestibular issues, etc. When the MRI came back with tonsillar ectopia, I was at least feeling like we were heading towards some answers and potential treatment, but it seems the doctor I saw yesterday was only willing to consider clear cases of Chiari (3-5 mm and above). My understanding is that tonsillar ectopia can result in the same symptoms as a classic Chiari finding because of the potential for blocking/restricting CSF. At this point, I'm frustrated by being blown off, but also want to at least talk to someone who acknowledges that the tonsillar ectopia real and can be treated. Do I turn to a medical neurologist as opposed to a neurosurgeon at this point? Any thoughts would be appreciated. Thank you!

[selmaS]

Hi and welcome to the Chiari forum.

Chiari is the malformation of the skull....low lying tonsils can be due to blunt force trauma....and yes can cause the same symptoms as Chiari....

There are many Drs that do not know enough about  Chiari and related conditions and dismiss us and our condition....they only look at the herniation and the length .....they need to see how it affects us with symptoms and our overall health.

You will want to have your MRI reviewed by a true Chiari specialist to see what all is going on...and have more testing to rule out related conditions.