Stella at Nationwide Children's Hospital
Now for the real reason we were in Ohio.
GREAT NEWS - Stella is officially over her pseudo tumor cerebri! Her neurosurgeon declared victory over it which means she is one of the lucky ones to beat it. She didn't even have to have another spinal tap. The risks of putting her under again to do one were not worth is since she is doing so good. Sometimes they like to find out what a baseline normal is so if pressure builds back up they know exactly how much. Many people are stuck with this condition for a lifetime. They did extensive vision tests and her color vision is fine, some peripheral loss and her central vision is 20/25. She does not need glasses at this point...she is border line for needing them. This is the only lasting effect of having the fluid on her brain. Her neurosurgen wants to track her forever becuase he is building a database of children all over the world who have this condition. Currently there are only 300 in it. He wants to identify criteria for children who have transient pseudotumor vs. kids who have the lifelong kind. He is passionate about his work and will be speaking at the National Conference of Neurologists about this in September.
I can't tell you how happy we are to get such good news. It's been a long 4 months.