3yo, Chiari 1

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.


Thank you for introducing yourself yo us....that is great b/c other moms who have gone through what you and your son are dealing with will be great help and support to you.

Try clicking on "BLOGS" on top of the page...there is a mom blogging about her little one....her screen name is Lilyannesmom..she is great and I am sure she can shed a lot of light on things for you.