WorthTheFight
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The Origin of the “WTF!” Name
Some names have no meaning and some names mean absolutely everything to and about the bearer of the name. Our name falls into the latter category. Despite the more popular acronym, WTF! stands for Worth The Fight! The origins of our name began with someone that I love to the moon and back, who was struggling with depression. This…
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Struggling Through the Holidays
‘Twas the night before Christmas and despite the sleeping spouse, there was still one stirring in the Chiarian’s house. The stockings were hung by the chimney with care, as all hoped their sick loved one would be able to be there. The family was nestled all snug in their beds, while visions of disappointment danced…
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September Is Chiari Awareness Month
It’s hard having a chronic illness that isn’t all that understood. As patients, we have to fight on absolutely every level! Before diagnoses, we fight for someone to hear us when: Around diagnoses, we fight to: When our doctors continue to dismiss our symptoms, we need our friends and families to understand:
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![The Important Questions to Ask Your Neurosurgeon [Revised]](https://dev.chiaribridges.org/wp-content/uploads/2023/09/MRI-doctor_AS505903501.jpg)
The Important Questions to Ask Your Neurosurgeon [Revised]
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by
in Acquired Chiari Malformation, Advocacy Resources, Atlantoaxial Instability, Comorbidities, Craniocervical Instability, Ehlers-Danlos Syndromes, Empty Sella Syndrome, General Information, Heritable Disorders of Connective Tissue, Hydrocephalus, Idiopathic Intracranial Hypertension, Intracranial Hypertension, Intracranial Hypotension, Tethered Cord SyndromeMost Chiarians go to see a surgeon with an expectation of them being knowledgeable in their field. However, while they might be a neurosurgeon, their knowledge of Chiari and its comorbid/pathological conditions might not rank high in their practice. Make the most of your initial appointment by interviewing them and what they really know about…
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Obtaining Your MRIs on Disk
Hospitals and imaging centers in the United States are required to give you a copy of your imaging if you request it. Many hospitals and imaging centers will give a copy of your MRI on disk or flash drive immediately after your appointment, but they do this as a courtesy and not as a requirement.…
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Christmas Presence
Making homemade stockings and cutting flowers for wreaths. Baking treats and devouring them with hot cocoa by the tree that we spent hours decorating. Shopping for just the right gifts and wrapping them meticulously, so those I love know just how special they are. I remember all the traditions that we did together as a…
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Guidelines for Nonprofessional Opinions (NPOs)
If you decide to post your MRIs for Nonprofessional Opinions (NPOs) at WTF, please make sure that your post/images adhere to the following guidelines. Requests that do not meet our guidelines will be removed by an admin. PLEASE MAINTAIN 100% PRIVACY TOWARDS THOSE TRYING TO HELP YOU OR SOMEONE ELSE. We have very strict privacy rules…
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Nonprofessional Opinion (NPO) Request Form
The Nonprofessional Opinion (NPO) Request Form is required for all formal requests with the Admin Think Tank (ATT) – no exceptions.
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![The Michelle Cole Story – A Chiari Warrior’s Journey [UPDATED]](https://dev.chiaribridges.org/wp-content/uploads/2018/12/DSC07853t.jpg)
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,…