Bug met with her neurosurgeon and it didn't go well. He didn't look at her MRI before we showed up, so he had to step out and look at it. I was not impressed at all. He then came back to tell us that all she has is 5mm of her brain descending into her spinal cord. He called it something else. SHE HAS CHIARI!!! He said that because she can't tell us verbally what hurts that it can't be a real Chiari? She tells us with her actions what hurts or when she is in pain. I have researched and talked to others who have Chiair 1malformation (which is what she has) and even a 1mm decent is a Chiari. We have another MRI that will go more indepth and look at at the flow of spinal fluid to and from her brain. We will be looking for a new dr that has had young Chiari patients. Our daughters health is important to us. Seeing her in pain breaks our hearts. Please pray as she grows that her 5mm decreases and that her headaches are less accruing.
Kylie and John
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