Ehlers Danlos Syndrome

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,…
The Emmalyn Freeze Story – A Chiari Warrior’s Journey (Updated)

Colton 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…
The Petra Johansson Story – A Chiari Warrior’s Journey [English Version]

“We need to perform surgery on your brain, and we need to do it now!” What would you do if someone said that to you? Your brain – that thing on the top of your head that is all that is you. Someone needs to cut into it and fix what is wrong and there…
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…
Brain Under Pressure – Understanding Intracranial Hypertension [Archived]

INTRACRANIAL HYPERTENSION (IH) AND IDIOPATHIC INTRACRANIAL HYPERTENSION (IIH) ARE CONNECTED, BUT ARE NOT THE SAME THING AND THEREFORE SHOULD NOT BE USED INTERCHANGEABLY. Intracranial Hypertension (IH) means high pressure inside the skull. Intracranial Pressure (ICP) is measured in millimeters of mercury (mmHg). Most scholars agree that on average, “normal pressure” should be between 5-15 mmHg…
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…
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…
Overview: Craniocervical Instability and Related Disorders

Craniocervical Instability and related pathologies of the craniocervical junction are an important topic for anyone diagnosed with Chiari 1 malformation. “Complex Chiari,” or the presence of craniovertebral abnormalities or instability in addition to the presence of cerebellar tonsillar herniation, is present in approximately one fourth of all cases of Chiari 1 malformation[1]. These cases usually…