Doctor's Orders

I want to thank all of you who have been praying for Brooke.  As many of you may know we went to NY last week to see her Neurosurgeon and have more tests.  We found out from her new MRI that her brain malformation has become worse.  Her Cerebellum has now begun to wrap around her brain stem.  This is not good, since the brain stem controls breathing, swallowing, heart rate.  Plus the ligament that runs in the front of the brain stem has enlarged quite a bit.  This has caused her head to become wobbly and unstable.  The cerebellum in the back and the ligament in the front are blocking cerebral spinal fluid to her brain.  All of these things lead to the pain and many other symptoms she is having.  The doctor recommends brain surgery to correct all this.  Unfortunately, because she has the wobbly head, he can’t do a normal surgery or she would not be able to support her own head and have to wear a collar.  They normally fuse the head to the spine, but she is too young for this.  So he is going to do a newer surgery.  It will require a larger incision, but he feels that this will be better in the long run.  She may still have to wear a collar or have the fusion done later on.  He would like the surgery done this summer.

            As complicated as all this is, he then wants to perform the spinal surgery 2 to 3 months later so the spine does not pull the brain back down.  The problem with this surgery is you can’t see the tether on the cord.  So there are 6 criteria, she has to meet five to have surgery.  She has 4.  One of the ones she does not meet is Spina Bifida.  Which we found out she did have, but miraculously fixed itself! The other is a neorogenic bladder.  Everyone feels she has this one, but the urologist will not say she has it until more tests are done.  So we will do those tests in a few weeks.  If she does have the neorgenic bladder, she can have the spinal surgery.  If not, she will have to have MRI’s every 3 months after the surgery to make sure her brain is not being pulled back down. 

            We know this surgery can be scary, and overwhelming, but we want our little Brooke to be as pain free as possible.  Our prayer is this will help.  Our family feels so blessed that God led us to the right doctors so early on.  So many of Chiarians suffer for years with no pain relief. 

Thanks again to all of you for you support and prayers.