Considering that Chiari Malformation was discovered in the late 19th century, and the advent of the MRI took place in the mid-1980s, you would expect this data to be analyzed much more expeditiously (and not just in pediatric patients, especially since the vast majority of Chiarians don’t develop symptoms that would press them for imaging until they are in their late teens to early adulthood). We are being given information based on faulty and outdated information. While such information might not seem important to the doctors that treat us (many of which have no clue that it is faulty and outdated information), to the patients that live through surgery after surgery and continue to try and hold onto hope, accurate data, and how that data can transfer into better options (surgical and otherwise) means everything! There really is so much data out there that our doctors don’t even know about, so it isn’t just a research issue, but an issue that there is no accountability for those who are treating us.

Reference:
Rare Diseases and Syndromes of the Spinal Cord
By Ibrahim M. Eltorai
https://books.google.com/books?id=iqfPDQAAQBAJ&printsec=frontcover#v=onepage&q&f=false