Molly Update 2.4.09

2233506Just returned from Madison, Wisconsin where Molly met with pediatric neurosurgeon Dr. Ishkandar for a "second opinion" on her Chiari I Malformation and 2 brain surgeries (catch up here).  Ishkandar is a friend and respected colleague of Molly's neurosurgeon, Dr. Frim.  And they somewhat regularly refer patients to each other when they may benefit from "fresh" eyes. 

Dr. Ishkandar works at the American Family Children's Hospital in Madison.  He has been out of the country until recently, so Molly was finally able to meet with him.  He reviewed all of Molly's MRI's, Dr. Frim's operating room notes, and took down everything about her story from first symptoms to today.  Lots of info, lots of questions. 

He has basically asked for 2 tests.  First is a sleep test (overnight) in order to determine if there is something about her sleep that is making it less productive: apnea, brain activity, etc.  Second is a neuro-psych test (3-4 hours) that is a comprehensive test of her IQ, mental abilities, comprehension, and tons of stuff.  That is probably the most important test right now to determine where her deficiencies are and try to find ways to help.

Ishkandar thinks that Molly's post-surgery neurological issues (thinking, problem solving, finishing thoughts, etc) can be helped.  Her neurologist thinks the same, but this test is another big step in that direction.

The tone of the meeting was positive. He sees her as improving, even if plateued a bit.  He really believes it may take up to a year to see the full benefit of the surgery.  He sees no need for further surgery.  All MRI's look as they should.

Generally we are very pleased with the meeting. It confirms where we think we are right now, that things are getting better and that nothing can be done anatomically to improve things.  Another surgery would, in fact, probably make things worse at this point. 

Thanks for your prayers and notes today.  It may take a couple of months (at least) to get in for the tests.  We'll let you know if/when something gets on the calendar.