As an update we are scheduled to see Dr Paolo Bolognese, a Neurosurgen, of the Chiari Institute in Great Neck, NY. We submitted all of my wifes information, they reviewed it and have decided to see her based on everything we have said and submitted. It seems the Chiari Institute is on the leading edge of Chiari research, diagnosis, and treatment. I would recommend them to anyone who thinks that Chiari could be a possibility and are getting no support from their Neurologist. Just realize that most Neurologists rely on a Radiologists to review your films and make the diagnosis. The problem with this is that the Radiologists isn't familiar with your symptoms and is only looking at the midline of your MRI and looking for a minimum of 5mm herniation below the foramen magnum. Again, the problem with this is that the part of the cerebellum that herniates is generally the tonsil and they are not actually at the midline...they are both on the left and the right side of the midline. A Chiari Malformation can easily be missed by a normal Radiologists and Neurosurgeon that isn't familiar with the latest data on the diagnosis of this problem. I would venture to say that there are 1,000's of people out there suffering from this trearable condition with either no diagnosis or even worse...with the wrong diagnosis like MS or migraines and simply get a pill and are sent home.

To everyone out there with unexplained problem...DO NOT sit and wait for a doctor to do what is right for you. 99% of the doctors out there are looking for the easy answer to a difficult problem and quickly become frustrated when they can't actually diagnose you and will quickly leave you behind and not return phone calls. Use the internet if needed and find a specialist who truly cares and is willing to stray slightly from the mainstream and actually listens to you.