So I guess I should start changing these to Chiari 1 malformation, syrinx update.
Tomorrow is the big appointment with the neurologist at Dell Children’s Hospital in Austin. I’m so afraid this one will talk me into thinking everything is a-ok with Andres without doing any more testing. It’s hard when what you want to hear is that no more testing is needed, yet something in you tells you it’s not true. I want some cold hard facts, imaging, nerve conduction studies, something that will prove Andres is not having any neurological damage due to his condition. I just don’t think we ought to base an 8-year-old’s medical treatment off of what he says his symptoms are, even if the neurologic exam is negative. The cold hard facts are he has blurry vision, daily headaches, and occasional numbness and tingling in his hands. It sounds pretty suspicious to me.
So, we’ll see where we go from here. The pediatric neurosurgeon here has got a great reputation and has had experience with Chiari, but it’s really difficult to get a referral is what I hear. The last thing I want is for Andres to have to have brain and spinal cord surgery, but to do nothing if that is what he truly needs would be worse.
I’m praying I will stand my ground and the neurologist will see everything he needs to to accurately assess Andres’ situation, and I’m praying for aggressive testing so that of everything we can be sure.