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The Michelle Cole Story – A Chiari Warrior’s Journey [UPDATED]
As I sit down to update my journey, I am crushed that we’re still figuring things out (and nothing really was as I was initially told it would be), yet at the same time, I’m so thankful that we’re continuing to figure things out. Nobody should have to fight a fight like this (every symptom,…
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Get Moving: One Small Goal At A Time
Tired of your doctors telling you, “If you just exercised, you’d feel better!”? Well, they may not be all wrong. Just hear me out! The truth is we all just want to feel better and fight to get as much of our lives back as we can. That is never going to be as easy…
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Holiday Hug
The week before Christmas in my home is filled with gift wrapping, cookie baking, dogs barking, people talking (loudly)… On a normal day, we feel the pain in the stiff neck, the backache, the headache, (the list could go on). When we are surrounded by stressors, they can take a toll on a person, especially…
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WTF! Online Support Group Meetings
Ever feel alone in all you’re facing? It’s one thing to read what people are going through, but to see them as they share how they’re going through the same struggles that you are can be game-changing! Starting in December, the tribe will be hosting online support meetings on the first and third Tuesdays of…
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The Prayer of An EDS/Chiari/Comorbid Patient
As we lift up a warrior fighting EDS, Chiari, and/or Comorbids,We are believing You for: Knowledgeable doctors/surgeonsWith hearts for the patients that are trusting themEars to hear themAnd a willingness to unlearn and relearn CSF leaks to sealCranial masses to disappearNarrowed venous structures to widenAnd cranial pressures restored to normal Sticky…
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From The Inside Out – Understanding Syringomyelia & Syringobulbia
WHEN A DOCTOR TALKS ABOUT THE “MOST SERIOUS” COMPLICATIONS SURROUNDING CHIARI MALFORMATION, THEY USUALLY SPEAK OF PARALYSIS OR DEATH. WHILE BOTH OF THESE ARE FAR LESS COMMON THAN THE ARRAY OF OTHER SYMPTOMS AND COMPLICATIONS, THEY BOTH CAN INVOLVE THAT OF A SYRINX. The word syrinx (seer-inks), plural syringes (seer-en-geez), means cavity or cyst. Syringomyelia…
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Overview: Chiari Comorbidities & Etiological/Pathological Cofactors
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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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Commonly Shared Links to Chiari Bridges – An Admins Resource
HOMEPAGE: <https://chiaribridges.org/> (go to article) ABOUT CHIARI (TAB) Understanding Your Head and Neck Pain: <https://chiaribridges.org/understanding-your-head-and-neck-pain/> (go to article) Overview: Chiari Malformation [Revised]: <https://chiaribridges.org/chiari-malformation/> (go to article) What’s In A Name? An Expansive Review of the Name and Definition of Chiari Malformation: <https://chiaribridges.org/whats-in-a-name-chiari-malformation/> (go to article) One Painful Fight – Get Ready To Rumble!!!: <https://chiaribridges.org/painful-fight-get-ready-rumble/>…
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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…