Visit with the Neurosurgeon

Today the girls had an appointment with Dr. Trumble to review the scans done two weeks ago. Paige's CT scan came back with improvement of the metopic synostosis. She still has a slight malformation on the left side of her skull but will not need further surgery or treatment. She will follow-up with another CT in a year. Bree's MRI did not produce clear images because of her wiggling and moving. They were able to note that the sub-arachnoid spaces had decreased, so from a surgical standpoint she has been cleared from Dr. Trumble's care. However, in her first MRI it was noted that she had Agenesis of the Corpus Callosum (ACC - absence of the tissue that connects the lobes of the brain). This MRI, though unclear due to the movements she made during the scan, showed no signs of a corpus callosum. It was suggested that we contact her neurologist to speak with him about requesting another MRI with sedation to verify the findings. ACC is not life threating in and of itself, but when you add the diagnoses of Infantile Spasms and vision problems, we could be dealing with a bigger problem. Since the day they were diagnosed I will never forget the mentioning of Aicardi Syndrome. She could have all of these problems and not have that syndrome, but it will always sit in the back of my mind. So we will see what the neuro-opthomolgist and follow-up MRI says before I start to worry.