Molly Update 2.4.09

Just 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.

Comments

[Scot McKnight]

Very good news.

[Don Hendricks]

Molly's willingness to pose for your photographic shennanigans only endears you both to me and underlines the truth that we need to make the best of our trials, hardships, and challenges.

Don

[PastorMark]

With my wife's Chiari she is always in tune for it mentioned here and there. You probably have already seen this on ABC but if not it is rather interesting. It aired about two weeks ago.

"The boy who couldn't sleep" because of Chiari
http://abcnews.go.com/Video/playerIndex?id=4827934

[Marcus Goodyear]

This is great news! Glad to hear it. We're still praying for you all.

[Kevin in Manila]

Thanks for the update. I always check when I see an update on her in the feed.

[Steve McCoy]

I don't think I've seen this. We'll check it out. Thanks.

[Steve McCoy]

Are you saying those are the only posts you read??? :)

[Carrie]

Hi Steve...and of course Molly...I also have Chiari and actually found you when I was updating my website and trying to locate the famous Chiari decompression video...that was of course "removed by user" but I think the video shows the surgery best. I had decompression surgery on January 7, 2008 and I wish I could say I am all better...but there are some things that are better..and other things..worse. I am happy to hear that Molly will not have to deal with any more surgeries and is getting better. Glad I found your site...feel free to visit mine: www.carrieschiariconnection.com
~Carrie
Chiarian and Advocate to raise awareness!

[Jonathan]

Hey, appreciate the update - I'm glad to hear things are looking "up". When I started reading a few weeks ago I went back and read your whole Molly story and have kept her on my mind.

[Steve McCoy]

Thanks for connecting here, Carrie. We'll check out your site. Hope things
get better!

[Steve McCoy]

Thanks Don, though Molly thinks up half the funny stuff we do. She wanted to
go in the hallway and pose with different chicken pictures than this one.
After this pic she said, "Can't you write something on it?" She's a funny
gal.

[Carl]

I am glad to head of the good news and encouraging opinion of the doctor. My prayers and thoughts are with you all.

[Scott & Jennifer McCoy]

This is, of course, wonderful news!