Dodged it again

No surgery!

Today Dr. Troup told us that Emma's Chiari malformation actually looks better than the last MRI (which is unusual) and that her spinal fluid is flowing around her compressed brain stem very well.  In life, Emma's symptoms are pretty much the same or improving, so it was nice to hear the medicine backing it up.

As for the syrinx in Emma's spine, it's still huge, maybe slightly bigger.  It goes almost the entire length of her back.  In the past, Troup has told us that we would be able to tell it was causing problems if we saw diminished use of her arms and hands.  Today he said we would notice worsening use of her legs.  Let's be honest - she can't use her legs very well to start with, which begs the question....would she be able to walk if we drained the syrinx?  Dr. Troup doesn't know.  But it can't hurt.  But it's still surgery on her spinal cord.  But it might help.  But it might not.  Ugh.  He said that he's not inclined to do the surgery, but if we want him to do it, he will do it.  We said no, and I doubt we will change our minds.  Emma is getting stronger, and she's pulling up on her knees and crawling much better.  I would hate to put her through a surgery and end up no better.  If she DID end up better, it wouldn't be THAT much better...it's not a CURE.  Just a possibility for marginal improvement.  A possibility.  For marginal improvement.  Nah.  We're good.

As I suspected, Troup told us that if we drove a few hours up north (coughResearchTrianglecough), Emma would be decompressed (probably a couple times and probably wouldn't have shown improvement).  It's amazing how many extreme life-altering decisions aren't always made based on black-and-white, scientific fact.  So much of it is judgmental.  And I'm so glad the man making judgments for us is Chris Troup.






PS - If any of you reading this are accountants, you may recognize that this decision has a lot to do with most accountants' risk-averse way of thinking.  So I'm thankful that I'm married to a wonderful, talented, sweet, kind, man who is an accountant and thinks like me.  Can you imagine if we disagreed on something so serious???