Hydrocephalus - Things are never what they seem - AGAIN

We talked to the Neurosurgeon today about Nora's "Hydrocephalus." Turns out, what Nora has going on in her brain is not Hydrocephalus at all. While her condition results in a larger than normal ventricle in her brain, it is not due to a blockage of the CSV (spinal fluid) that can be repaired with shunt surgery. Instead, Nora's brain on one side is formed differently, resulting in more space for the fluid to fill. The Neurosurgeon is just calling it Ventriculomegaly. Maybe the neurologist will give it another name. (Which is very confusing, because I always thought that that term was reserved just for mild ventricular enlargement, and hers is actually pretty large, but the Neurosurgeon explained that they do not diagnose it as Hydrocephalus without the pressure and enlarged head size). The good news from this is that Nora will not need shunt surgery, which is no walk in the park and requires lifelong surgeries.

We are now going to meet with a pediatric neurologist to learn more about the condition she does have; but they are not going to really know a whole lot more than we know now. I suspect that the neurologist will outline with us the full range of potential complications and outcomes we could expect from Nora's condition - from mild to very severe. I don't anticipate that there is an actual treatment for Nora's enlarged ventricle, but may be for some neurological symptoms that she may encounter from it. Of course, these are just my guesses until we meet with the neurologist; but so far I have been right on most of this stuff. (Thank goodness for Google!) With Nora's chromosome disorder, the doctors don't really know what to expect either!

It is difficult every time we have to face the news that Nora will be impacted developmentally; but we are really in the same place we were before this latest bit of news. We won't know the exact impact on her until she grows - so we just need to get her home and start living and see where we end up!