Here’s one aspect of my story I hope may help others: I had a 5.5 mm herniation when I was first diagnosed yet my symtoms were severe.It took me 10 years to get my diagnosis, then more time to get my surgery because drs kept saying it wasn’t “enough” of a herniation to cause my problems.
Thank God I found an incredibly knowledgeable neurosurgeon who correctly attributed my symptoms to Chiari.Following surgery,he came out and told us that MY TONSILS HAD CALLOUSES on them from being squished in there so badly.That despite a “small” herniation.
I am living proof that our anatomy can have far more to do with the level of our symptoms then the size of the herniation.I was incapacitated by Chiari prior to surgery,yet I still had drs telling me I didn’t have it at all!
Please seek a second opinion (or even 3rd or 4th opinion) if you have significant symptoms and your dr dismisses them as unrelated to Chiari.I am grateful for the improvements I got following surgery,but believe they would be greater if I’d been able to have surgery sooner.