Okay my fellow chiarians, I need your help! I am seeing one last neurosurgeon soon and I need to know what tests he needs to perform on me so he can determine if my Chiari is severe or not. What test or tests have you gotten done that have been a deciding factor in if it is severe or not?
thanks much!
Definitely the CINE MRI and the upright MRI/CT scan. But "severity" also depends very highly on the symptoms you're experiencing. For instance, you can have a 15mm herniation but have no symptoms and just need monitoring. Or you could have a 5mm herniation and have the headaches, dizziness, motor skills, loss of balance, passing out, etc. So don't let them leave out your other symptoms outside of the testing!!! They are a huge part too! <3
Savanna, I agree symptoms are the biggest factor. If an NS says no intervention is needed because of the size I would continue elsewhere- buts that’s me and I would have crossed the Atlantic in a row boat to get the surgery. Unless you have a syrinx and severe cranial cervical instability surgery is generally a personal decision. Surgey- done right- is supposed to arrest the progression of symptoms. In some cases it eases symptoms greatly. If the surgery is partial or leaves a cranial cervical instability untreated the symptoms will get worse.
Types of cranial cervical instability are:
basilar invagination
Retroflexed odontoid
Abnormal amount of movement of the cranial cervical joint (front to back, side to side, or up and down, subluxations
Abnormal amount of movement of atlanto- axial joint
This is where the flexion extension cervical MRI and rotational cervical CT scans come in, then you need an NS who actually knows how to measure the scans to screen for it- most radiologists will not do the measurements needed for the diagnosis.
The CCIs can show up when a patient has Ehlers Danlos Syndrome- many many of us Chiarians have EDS. See the Brighton Criteria and the Beighton criteria to get an idea of how a doc tests you for it, or you can have a genetic test done (this is pricey and I believe requires a skin sample).
Jenn 
the symptoms get pretty bad. i cant breathe sometimes and choke on nothing. when i talk i literally can not breathe and pressure builds up. my mom will notice and worry cus im not aware at the moment that im not breathing. i only realize it after the fact. this comes in waves, some times im okay, others i turn purple from not breathing and not knowing that i stopped. i have bad headaches that almost no medicine works on now, and the little fits of not breathing are what I call attacks
Savanna, the breathing issues are very serious. I am very worried about your breathing when you sleep too. These issues should be raised with a doctor right away, this is emergency room worthy. Some chiarians have central apnea - as in central nervous systems inability to regulate breathing. I am not a doctor and can’t give a professional opinion, but from what I’ve read over the years this is a condition that needs immediate attention. You should be ADAMANT about finding out if you have a basilar invagination. This can be seen plainly on a brain or c-spine Mri. Please let us know how you are.
My mom says something when she realizes I’m not breathing. I don’t know if it happens at night. All doctors have said no surgery needed and to manage pain with meds
Savanna j, how do you feel about it? If you feel something is wrong and take into consideration your breathing issues you have a right to find answers. You have a right to get other opinions from new doctors. You can ask for a sleep study you have more than enough reason. Please keep us up to date.
Jenn