Hi and welcome to the Chiari forum.
It is possible that u r not alone with the stroke like conditions/symptoms....I know many have stated they went to the ER with stroke like symptoms, just not sure how many may have been DX'd at that point....
By ur conditions being "advanced" I am not sure what u mean....but it is possible for u to have Drs that do not take this conditions seriously....so I would advise u get to a true Chiari specialist.....
See the list of Drs in the Health Pages the list is not a referral nor an endorsement....it is only meant as a starting place for u to research Drs....the list was compiled by the members here of Drs they have been to and liked....we advise u to visit a few Drs and compare what u r told....educate urself so u will know the right Dr when u meet them....and last, be advised u may have to travel to get to one.....
http://www.medhelp.org/health_pages/list?cid=186