Why Are Chiari Malformations So Difficult To Being Accepted By Doctors?
type 1. She went through alot of specialists everyone knew nothing that Chiari Type 1 causes problems. She finally had her Chiari decompressed after getting help on a forum recommending a doctor who specializes in this rare disease. I had to go through the same thing trying to get help making contacts with other patients and doctors looking for someone who could tell me if it was chiari. Had to switch my health insurance two times inorder to have treatment done. Sorry to go on so long but it took me six years to get treatment and now no guantees about if the wait for treatment caused permanent damage to my spinal cord. I hope this Dateline episode alerts both medical community and people in genaral about it and how to get treatment. I just will never understand why it is so difficult to diagnose even if it is rare. But, I do want to Thank CCF and MedHelp for their assistance over the last couple years trying to find answers. Maybe more research will be done in this area.
