my 4 year old son just got diagnosed with Chiari 1 today. we are scheduled to see the neurosurgeon tomorrow already! This seems to be moving really fast. It is overwhlming and I have no clue what I am getting into. Any advice?
Make sure you take someone with you to the Neurosurgeons appointment. I would even take a small tape recorder. They usually go over a lot of information & as a parent it is very emotional. There is a list in our Resource page of what to remember for your first appointment. It is really good. I will be praying for you & your son & family. Please know children do much better after Chiari Treatment than Adults, so please do not let anything scare you that has been posted here.
Let us know how how your son's appt goes. We really do care & understand,
ok, here goes! We saw the neurosurgeon and Kaeden will need surgery but first we need to get a very extensive MRI that takes 2-4 hrs on October 31st, then we see the surgeon again on November 5th! These are the 1st open dates they had so they could change due to cancellations. Then unless he has a miraculous recovery we will have surgery. They said it is a significant malformation!
Is it a Cine MRI? It shows the CSF flow and they look to see if it's blocked. How are you doing? Where you satisfied with the appointment and the doctor? I hope that you and Kaedon are okay. Praying for you both ........Wendy
Yes it is an MRI where they look at the flow of spinal fluid. All of these medical terns are overwhelming. I am doing OK it’s just overwhelming. One good thing is that there is a chiari event 1/2 a mile from my house today that someone told me about so I am gonna go check it out and hope to meet other parents.