Judy Marie
Message 1 of 1
WOW! I have been reading some of the older posts here and realize just how far the information has advanced since I was first diagnosed in 1996. It is true that Chiari was an invisable illness before there was such a thing as an MRI. It was discovered only during autopsys (long ago) and, it was fist discovered in that manner by a Dr named Arnold Chiari! There was no known treatment or diagnosis at that time..only guessing by the drs. It was considered a very rare condition 1-in-400,000...therefore.most drs. didn't consider that they would ever see it and so they didn't learn much about it. Now that we have MRI the docs are discovering that chiari/syringomyelia are not as rare as once thought! If you are diagnosed with either of these illnesses (not a disease either...by the way) but a birth defect, PLEASE DO NOT rush into surgery with an unknown Dr. Go to the WACMA website and also the ASAP website and get yourself informed. You will find much info there and you will also find the right surgeon to go to. I have had surgery...done by Dr John Oro. He is doing a chiari study and he is in Columbia MO...they have a chiari clinic there and it is so wonderful to talk with drs and nurses who, know and understand all of your weird symptoms.