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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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DEAR FAMILY (***Revised: Clean Version***)
FOR ALL MY NON-CHIARI FAMILY MEMBERS AND FRIENDS… I really NEED you to listen to this and just try to understand! I know there’s absolutely NOTHING I can say to help you understand the pain that I go through; what it feels like to have pain all the time, in places that I didn’t even…
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DEAR FAMILY (***Strong Language***)
FOR ALL MY NON-CHIARI FAMILY MEMBERS AND FRIENDS… I’m going to cuss, but I really NEED you to listen to this and just try to understand: I know there’s absolutely NOTHING I can say to help you understand the pain that I go through; what it feels like to have pain all the time, in…
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The Denelle Crespo Story – A Chiari Warrior’s Journey
I was what you would consider a “typical developing child” growing up, I did not have any health issues and was able to enjoy much of my childhood. My journey to finding answers in regard my health began at 15 years old, when I began rapidly losing my vision in my left eye. I dealt…
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The Eric Michael Nault Story – A Chiari Angel’s Fight
During my pregnancy I remember being very unwell, writing in my journal, “there is something wrong with pregnancy, I know something is wrong with my baby”, at only 10 weeks gestation; proving that a mother always knows. At around 30 weeks gestation my unborn baby started to get chronic hiccups followed by trembling, lasting several…
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The Majbrit Jessen Story – A Chiari Warrior’s Journey
I had a rough journey with these conditions and I am sharing it to help show how complex we can be and how much we need the medical community to step it up a notch (or ten)! I grew up in Denmark, where I lived when I was diagnosed and had my first surgeries. I…
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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…
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US Government Officials Endorse Inhumane Torture of Chronic Pain Patients
TORTURE EXISTS IN 2018 IN THE US AND IT IS SPREADING GLOBALLY. IT’S HAPPENING IN MEDICAL FACILITIES. IT’S HAPPENING TO CHRONIC PAIN PATIENTS (CPP), PEOPLE WHO ARE RECOVERING FROM SURGERY AND TRAUMATIC INJURY AND PEOPLE WITH PAINFUL, INCURABLE DISEASES. THE GENERAL ASSEMBLY OF THE UNITED NATIONS HAS GONE ON RECORD STATING THAT, “UNTREATED PAIN IS…
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Our Vision
Like most of us, when my symptoms started, I felt very alone. I was blessed to have family and friends that helped me through and cheered me on, but there was a part of the fight that only those directly going through it can understand. At that time, online support groups were far from what…
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The Ryan & Zona McGee Story – A Chiari Angel’s Fight
Zona McGee was blessed with a vibrant and beautiful little boy on July 2nd, 1993. She named him Ryan Andrew and fell in love with his sweet face the second she first held him. He looked just like her! Her husband, Kevin, and daughter Crystal, eight-years old at the time, were over the moon as well.…