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Health & Fitness: Walking In Your Power!
After years of having our symptoms dismissed, having our pleas for help and understanding seemingly fall on deaf ears by our doctors (and many times our friends and family as well), it can be a relief to finally have a name for what has gone so horribly wrong with us. The relief is short-lived however,…
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The Chiari Malformation Ehlers-Danlos Connection
CHIARI (KEE-AR-EE) MALFORMATIONS ARE FAR FROM RARE, THEY ARE JUST RARELY UNDERSTOOD, EVEN BY MOST MEDICAL PROFESSIONALS. A CHIARI MALFORMATION EXISTS WHEN THE LOWEST PART OF THE HIND BRAIN (THE CEREBELLAR TONSILS) PROLAPSES INTO THE HOLE AT THE BOTTOM OF THE SKULL (FORAMEN MAGNUM), ENTERS THE SPINAL CANAL AND OBSTRUCTS THE FLOW OF CEREBROSPINAL FLUID…
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A Bruised Mind – Chiari & Depression
Depression is more than simply “feeling sad.” It is a deep dark tunnel of despair that seems to have no end. It manifests as a cohort of symptoms, seeking to wreak havoc in every facet of your life. The activities that you once found enjoyable seem to take more energy than it promises to be…
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You The Advocate: Getting Started With Self Advocacy
Self-advocacy starts with believing that you are worthy of love, respect, dignity, and autonomy. This belief will animate everything you do and will affect how others will believe, perceive, and respond to you. It will affect the degree to which others will be able to help you, including your medical team and support systems. Other…
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Overview: Complications Associated With A Chiari Decompression
From Intracranial Hypertension (formerly known as Pseudotumor Cerebri), Hydrocephalus, Tethered Cord Syndrome, to conditions related to the presence of a connective tissue disorder, such as Ehlers-Danlos Syndrome, the primary reason for post-decompression complications seen in the Chiari Patient Community continues to be largely related to undiagnosed and untreated comorbid conditions.
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One Painful Fight – Get Ready To Rumble!!!
“Make it stop!” “I can’t take this pain anymore!” How many times have you, or your loved one, cried out these very words? Pain from a Chiari headache can be brought on from the simplest of things – a sneeze, a cough, laughter, or bearing down when going to the bathroom. We never know when…
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The Christopher Ellington Story – A Chiari Warrior’s Journey [Updated]
My introduction to Chiari malformation I (CM1) begins in 1994. I had been married about 7 months and we had just celebrated our first Christmas together as newlyweds. Shortly after the new year, I developed a bad headache that eventually evolved into losing my eyesight in one eye. I went to the eye doctor, who…
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The Diagnosis – Round One
One of the biggest hurdles a Chiari patient may face is that of simply being diagnosed. Some studies cite an average of 5 years between the onset of symptoms significant enough for a patient to seek medical care and the patient receiving an accurate diagnosis of Chiari Malformation. Sadly, however, online support groups and message…
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Overview: Chiari Treatment Options & Potential Pitfalls
Once diagnosed, you will usually be referred to a specialist (not a Chiari Specialist, but an everyday, run-of-the-mill neurologist or neurosurgeon). They tend to come in one of two types: Either they are very passive and just want to wait and see how bad it gets, or they are very pro-surgery and while they will…