Hi Colleen. I didn't know you had responded... thanks for doing so. I'm having cognitive issues right now and it is difficult for me to organize things. I suspect a chiari malformation problem (was diagnosed with this 11 years ago, but not offered any care for it or told it could create problems). I have a long list of EDS and Marfans symptoms. I'm trying to organize all the data. I am seeing a neurologist in the Twin Cities later today. It does not appear that Mayo doctors want me as a patient.