I just wanted to welcome you to Neurotalk
I see that you've also posted in the Aneurysm forum. Sometimes it takes awhile to get responses, but assuredly you will find many caring folks here.
I don't have any helpful info to offer, but wanted you to know that I'm sorry you are facing this frustrating situation. Perhaps someone will come along who has experienced something similar.
I hope you have a good medical team looking out for you.
Perhaps you can peek in some of the other forums here for similar symptoms. At the top of each forum there is a section called 'The Stickies'. This is full of great information and maybe you can zero in on the symptoms you are faced with.
Others will be along with more ideas.
Caring
Rae