My son was recently dx with a 6mm CM 1. My silly pediatrician told me not to go home a google it until I spoke with the NS. Who is she kidding? After she uttered the words "brian surgery and fatal". I think I googled it from her parking lot. I have done tons of research over the past week, and I am sure I have tons more to do. The NS at Childrens Dallas had a cancellation so our appointment has been moved to tomorrow (Feb1). I have also spoken with the Chiari Institute in NJ. I have sent my records to them as well.
as of now we have been dealing with daily headaches, neck pain, noise sensativity and generally not feeling good for over a yr. I finally demanded further test after his 3yr check up in November. He had his MRI a week and half ago. And result were given last wednesday. I am a wreck. My husband and I have decided not to tell many family members until we know more information as to not scare them to death as well. So I have nobody to discuss this with and vent or cry or whatever I need to do at the moment.
He also has some sinus issues and they have put him on a long term atibiotic. Ped thinks that mat be causing some of the issues and may be mimicing some CM symtoms. I think I will feel better after talking to the NS.
I will post an update tomorrow after our NS appt.