Agreed - sounds like a lot of new information that perhaps the health care professionals don't understand either.
And what medical facility are you going to? Did I read that you are going to Johns Hopkins or was that someone else?

Sidebars: when my CSF leak was repaired, the right septum and sinus were "renovated" AND the doctors were in disagreement over whether the sella was empty, partially empty, or if there was a cyst in the way.