Just got a call from Mayo Clinic's Neurosurgery Dept in Jacksonville, FL. They want me to fax them all my radiology reports and operation reports for their Chiari team to look at. The guy I talked to said that he would get back to me within 48 hours of receipt of my fax with the teams recommendation on farther treatment.
The whole time I was telling him what had been done, he kept saying stuff like " really?", "you're kidding me?", etc. And he could not believe they don't have me on a better pain management system.
Keep your fingers crossed that this will be a next step to getting answers.