I admit it, I’m a news junkie. Not politics, more public interest stories. I guess it’s that gossip girl in me, or maybe I just want a reminder that there’s a world out there still spinning on its axis.
Imagine my surprise when I hit www.foxnews.com today for my daily news dose and I saw on their home page a story headlined “Rare Disorder Makes Girl’s Skull too Small for Brain.” Sounded like Chiari to me, but surely it couldn’t be. I mean, it’s not exactly a rare disorder from what all the doctors are telling me. Lots of people have Chiari, they just don’t know about it and for many people it’s asymptomatic.
Well, of course I clicked on the headline and read the article. The girl in the story, 6-year-old Allie Barone, did indeed have a Chiari 1 malformation. She had her surgery August 1, just six days before Andres had his. According to the author, Chiari malformation occurs in about 1 in 100 people. Most of those people fall under the asymptomatic category; unfortunately Andres was not one of them. The girl in the story had the same surgery Andres had, but Andres’ surgeon, Dr. Timothy George of Dell Children’s Hospital in Austin, Texas, decided once he opened Andres’ brain, because he liked what he saw as far as the elasticity of his dura, not to open the dura and do a patch. Instead he removed a small piece of skull and a piece of Andres’ vertebra to make more room for his brain. Andres’ surgeon admitted it could turn out he made the wrong call if a repeat MRI in six months shows Andres’ skull is still too small for his brain; but at the time of surgery he felt the possibility of success without the dural patch was too good to open the dura and risk all the potential complications.
Unfortunately, Allie’s neurosurgeon had to do the dural patch to accommodate her defect. Allie’s experience was repeated cerebrospinal fluid leaks (one of the risks of opening the dura) after surgery which required three additional surgeries. She’s finally on the road to recovery; and according to her parents she’s like a brand new kid with more energy than ever.
Makes you wonder about all the people who get told their Chiari malformation is just incidental and they don’t need to see a neurosurgeon. Makes me ever so thankful for Mered Parnes, M.D., and Michael Rearden, M.D., the two neurologists who between ordering additional imaging studies and referrals helped us find our way to Dr. George.
You can read Allie’s story, a great walk-through of the Chiari 1 malformation experience at http://www.foxnews.com/health/2012/09/11/rare-disorder-makes-girl-skull-too-small-for-brain/?test=latestnews.
Blessings,
Alyson
wordsofhisheart 