Chiari 1 Malformation In the News

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

 

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5 thoughts on “Chiari 1 Malformation In the News”

  1. I am Allie’s Grandma “Mimi” as she calls me and we are so thankful she is ok and recovering. She has so much energy now. This story was told by a friend of mine oto Foxnews.com and it has blossomed to everyone. It is so great to get the news out to everyone about Chiari and what it is and that you can have the operations and be healed. Allie was supposed to have just one operation and it turned into four. But thankfully Dr. Keating performed his magic with a little help and she is well on her way. We love her so much. Hopefully Andre will not need a repeat surgery. But if he does it will be ok. They bounce back very quickly.

  2. Hi Alyson. 🙂 Hope Andres is doing well!

    We were very happy to find Dr. Keating and his conservative approach with Allie. One of the many things I’ve learned is that not all kids with Chiari are alike. Lots of different reasons can cause the malformation. It seems to be more of a symptom than a cause. A previous doctor had recommended the fusion along with the decompression since she has some basilar invagination also. The idea of the fusion, and the lack of mobility and issues with growth, was so scary with her being so young. Dr. Keating ordered an x-ray and it showed there wasn’t instability to need the fusion now. Wow what a life-changing difference. I am a big advocate of second opinions now. And of finding a doctor, procedure, and hospital that you are comfortable with for your child. It all makes such a difference.

    He checked her CSF flow after the laminectomy and skull bone removal and said nothing budged so he had to do the dura. He also said that it was so tight in there that each time her heart beat, the pulse would cause the tissue to pound against the bone. Bad enough that there was already scar tissue. Imagine if we had decided to wait and see instead of going ahead with the surgery. Her symptoms weren’t bad enough yet to disrupt her too often. But since her brain stem was also being compressed and she already had neurological signs in her reflexes, I didn’t want to wait. When he told me about the scar tissue, I was so glad we had done it now. Kids bounce back a lot better than us grown ups. 🙂

    There was no way to know that she had a bone abnormality in her 2nd vertebra also. We’re very grateful that her unusual outcome happened at such a great facility. I can’t say enough about Dr. Keating and Dr. Yaun, the residents, nurses and all of the staff at Children’s National Medical Center. They were like family when we left. And they took amazing care of Allie. And me. Looking forward to seeing them again next weekend for her follow-up and to get her funky stitches removed.

    Thoughts and prayers for Andres to have an equally fantastic recovery!
    🙂 Stephe and Allie

    1. Thank you for your prayers and the additional details. I’m pretty floored to hear you talk about reflexes and the brain pulsating against the bone. Andres still has some reflexes he should have lost when he was a baby that has just recently been picked up by an OT. Hope you don’t mind if I email you some questions. Give that sweet girl a hug from us – so glad to hear she is doing well.

      Blessings,
      Alyson

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