General Information
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The Emmalyn Freeze Story – A Chiari Warrior’s Journey (Updated)
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in A Chiari Warrior’s Journey, Acquired Chiari Malformation, Atlantoaxial Instability, Craniocervical Instability, Dysautonomia, Ehlers-Danlos Syndromes, Heritable Disorders of Connective Tissue, Intracranial Hypertension, Intracranial Hypotension, Mast Cell Activation Syndrome, Syringomyelia, Testimonials, Tethered Cord SyndromeColton had just finished his Chiari Decompression. He was headache free and doing great! His neurosurgeon came to me and said, “This is a genetic disorder and Emmalyn should be checked.” Two weeks later I took Emmalyn into the Chicago area to be sedated for her first MRI of the brain and spine. Three hours…
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![Overview: Chiari Comorbidities & Etiological/Pathological Cofactors [Revised]](https://dev.chiaribridges.org/wp-content/uploads/2020/12/DominoEffect_AdobeStock_107422335-copy.jpg)
Overview: Chiari Comorbidities & Etiological/Pathological Cofactors [Revised]
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in Acquired Chiari Malformation, Atlantoaxial Instability, Comorbidities, Craniocervical Instability, Degenerative Disc Disease, Dysautonomia, Ehlers-Danlos Syndromes, Etiological Co-Factors, General Information, Heritable Disorders of Connective Tissue, Intracranial Hypertension, Intracranial Hypotension, Syringomyelia, Tethered Cord SyndromeWhen you start to educate yourself on a condition like Chiari, your vocabulary will be challenged. Most of us study with a medical journal article opened in one tab and medical dictionary in the next. Amongst all the medical terminology you will tackle, there are probably a few terms as important to your understanding of…
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Petra Johansson’s berättelse – En chiari-krigares resa [Svensk Version]
“Vi måste operera din hjärna och det måste ske nu”! Vad gör du egentligen om någon säger så till dig? Hjärnan. Den där delen högst uppe som liksom är allt som du är. Någon måste skära i den och fixa något som är fel. Och att det finns ingen tid att tänka efter. Hur ska…
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The Cameron Hallihan Story – A Chiari Warrior’s Journey
My son’s story started right from the moment he was born. I knew as soon as he tried to breastfeed that something was wrong. At that time, I didn’t know exactly what I was getting into. I figured he was aspirating like my first child. I took my brand-new baby home and tried to feed…
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A Mother’s Story
Today is 11th April, 2019. Spring is in the air, yet I struggle to appreciate its presence. My daughters are at school, my son is at home in bed yet again. Like so many other days he is unable to get up. My son is 19 years old and looks just like any other 19…
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Palliative Care: An Essential for EDS & Chiari Families
When I was first diagnosed with Chiari Malformation, I believed everything that my neurosurgeon told me. I was originally diagnosed with a Chiari 1 Malformation. I was told that it was congenital and due to my mother either using drugs or not getting proper prenatal care, which was crushing to hear, but not all that…
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Finding Hope In The Seemingly Hopeless Chiari Fight!
Despite the pain we face on a daily basis, that our doctors so often ignore… Despite the anger that builds towards a medical system that is relatively clueless about our conditions… Despite the frustrations we face when those we love fail to understand what we’re going through… … Despite it all, hope remains! There is…
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![Overview: Chiari Malformation [Revised]](https://dev.chiaribridges.org/wp-content/uploads/2016/10/Fotolia_79774600_XS.jpg)
Overview: Chiari Malformation [Revised]
CHIARI MALFORMATIONS (PRONOUNCED: KEE-AH-REE) ARE STRUCTURAL DEFECTS IN WHICH THE CEREBELLUM, THE HIND PART OF THE BRAIN, DESCENDS BELOW THE FORAMEN MAGNUM INTO THE SPINAL CANAL. While Arnold Chiari Malformation (Type 2) was first identified in the late 19th century by the Austrian pathologist Hans Chiari, much of the current medical knowledge has developed since…
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What’s In A Name? An Expansive Review of the Name and Definition of Chiari Malformation
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in Acquired Chiari Malformation, Atlantoaxial Instability, Craniocervical Instability, Ehlers-Danlos Syndromes, Empty Sella Syndrome, Etiological Co-Factors, General Information, Heritable Disorders of Connective Tissue, Hydrocephalus, Idiopathic Intracranial Hypertension, Intracranial Hypertension, Intracranial Hypotension, Tethered Cord SyndromeTHE DEFINITION OF A CHIARI MALFORMATION HAS BEEN LONG DEBATED. IT REALLY IS NO WONDER THAT PATIENTS AND MEDICAL PROFESSIONALS ALIKE ARE CONFUSED. THEN, WITH US FULLY UNDERSTANDING ALL SIDES OF THE DEBATE, WE DEFINED A CHIARI MALFORMATION AS STRUCTURAL DEFECTS IN WHICH THE CEREBELLUM, THE HIND PART OF THE BRAIN, DESCENDS BELOW THE FORAMEN…
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Submit An Article For Publication Consideration
Have you written something that you think would be of value to the Chiari community? Consider publishing it with us! It might be exactly what someone else needs to hear for them to make it through their next mile of the fight! Not all of our pieces are technical pieces. We want articles that are…