Chiari Malformation

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By Katie Ussin

Story Published: Jun 28, 2007 at 9:24 PM MST

Story Updated: Jun 28, 2007 at 9:24 PM MST

BILLINGS – One of the main reasons why the Carter family was chosen by Extreme Makeover is because mom, Julie Carter, who has Chiari, is an advocate for thousands worldwide suffering with the rare disease, Chiari Malformaion.
Neurologist, Dr. Lowell Quenemoen, Neurology Associates, PLLC, helps us better understand Chiari.
"This all ought to be sitting inside the skull,” said Dr. Quenemoen, pointing to a figurine of the base of the brain. “But in Chiari, we start to see a situation where it starts to push down. So, it's like pushing a cork into a bottle and as that happens it tends to block the normal spinal fluid flow." Mom, Julie Carter, and eldest daughter, Jade have both been diagnosed with Chiari. The family's other two girls are showing signs of it.
With Chiari, the base of the brain dips below of the base of the skull, as Dr. Quenemoen described as a cork in a bottle.
Symptoms include debilitating headaches at the back of the head, dizziness, and in severe cases disruption of vision and speech. Treatment can be just monitoring symptoms, medication, or often, surgery to remove part of the base of the skull to alleviate pressure.
“What we mostly see, we see in adults and this is called Chiari 1,” said Dr. Quenemoen. “In Chiari 1 it's basically just that dipping of the cerebellum down into that space. There's something called Chiari 2, which we see more in children, where there's a defect way down at the base of the spinal cord."
Chiari is a rare disease. Dr. Quenemoen said he sees just three to four new cases a year. He said it tends to be more common in women, and can be hereditary, as in the case of the Carters. "To really make the diagnosis you have to have some sort of imaging and the usual, or best imaging to look at this is an MRI scan,” said Dr. Quenemoen.
At the site of the home makeover Wednesday, was a group of folks from the area who are living with Chiari. They came out to help out in anyway they could because of how much Julie Carter has meant to them and their lives.
To find out how you can make a donation to the Carter family fund, go to www.kulr8.com and click on connections

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Ruth Theresia Günther said on Friday, Sep 9 at 6:57 AM

Ich möchte meine Hochachtung für Frau Carter aussprechen. Bis zum heutigen Tag den 9.9.2011 wusste ich nichts von der Krankheit Chiari.Ich wünsche Familie Carter viel Kraft und Freude mit der Musik. Seele des Menschen, Wie gleichst du dem Wasser! Schicksal des Menschen, Wie gleichst du dem Wind! Johann Wolfgang Goethe Sende Ihnen viele Sonnenstrahlen

patti said on Sunday, Jul 17 at 11:27 AM

i would like to find out more information about this. i have suffered headaches for several years at times the only way to releive pain is to hang head from a sling with body limp undeneath. just find this dieasae interesting.

Lisa Dodge said on Sunday, Dec 5 at 11:02 AM

Thank you for all you do for people. My daughter was finally diagnosed 2 years ago, had surgery, and now suffers from severe headache. She will be seeing her nuerosurgeon, in aurora,CO in 3 dys. He is not a specialist.

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