My six year old daughter was just diagnosed with ACM1 and syringomyelia. I don't know the particulars on how bad, etc. because it was actually just a fluke it was found on the MRI. Our family doctor suggested we go to Mayos and we now have an appointment for a week in January. Has anyone been there for this?
ive heard mixed reviews on mayo...or atleast the one here in Mn anyway..good luck wishing you all the best..