Olivia NF1 Update

Olivia had an MRI on March 21st to check on the optic gliomas on the optic nerves of both eyes. We FINALLY heard back from the eye doctor today.

So, the latest and greatest news first:  the gliomas and visual pathways do not show any changes - "They look great!"

The not-so-great news:  incidentally, a new glioma was found on her cerebral agueduct. Right now, there is no evidence of a blockage or other problems (great news), but it can potentially cause a blockage and hydrocephalus.  An excellent book about NF1 is now available at Google Books - pg 112 for an explanation of Hydrocephalus as a result of NF1. 

Because it was the eye doctor who ordered the MRI and called today (and not the genetic specialist) I didn't get information about follow up or what kind of treatment or anything like that.  I would say its another watch-and-wait type thing as long as it isn't causing problems. 

We are supposed to see the genetic specialist the end of May, but that appointment will probably be moved up so we can get in sooner.

More of Olivia's NF1 History -
December 14, 2010
July 13, 2010
(I did start working on the WHOLE STORY, but haven't finished it yet).

So please keep Olivia in your prayers!