Chiari Awareness Rally Online (Week 1) - Chiari Bridges

Published: 4 September 2022

Written by Administration Team

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Chiari Awareness Rally Online (Week 1)

When

09/04/2022

10:30 am - 12:00 pm

LET’S MAKE CHIARI KNOWN TOGETHER!!!

There are so many debates and controversial topics surrounding Chiari Malformation, but did you ever ask yourself why? Is Chiari just a congenital defect or can there be other causes for the hind brain prolapse? Can a posterior fossa be measured? If Chiari is nothing but a small posterior fossa, why do they only measure the tonsillar herniation? Is the “3-5 mm rule” completely insignificant? If so, why? Why do doctors assume that our tonsillar prolapse is from a small posterior fossa without even measuring it? Do neurosurgeons look for signs of other pathologies before recommending decompression surgery? Is there a connection between Chiari and all of these other possible causes (pathologies)? If one or more of these pathologies is a factor and it fails to be dealt with prior to decompression, can it cause the decompression to fail? Why do we have so many symptoms that doctors think are unrelated?

AGENDA FOR WEEK 1: (full event schedule)

WHAT IS CHIARI MALFORMATION?

- Symptoms of Chiari Malformation
- History of Chiari
- Debates surrounding the definition
- Diagnosis criteria – tonsillar ectopia, 3-5mm rule, CINE MRIs, Uprights

COMORBIDITIES OF CHIARI

- Syringomyelia/Syringobulbia
- Brain stem Compression
- Dysautonomia
- Intro to Intracranial Hypertension

CONNECTING THE DOTS: HOW IT RELATES TO YOUR CONNECTIVE TISSUES

GETTING A PROPER DIAGNOSES

TREATMENT OPTIONS

- No Treatment
- Posterior Fossa Decompression
- Looking for comorbid conditions

PLEASE REGISTER FOR THIS EVENT ON OUR FACEBOOK PAGE: GO TO EVENT

Bridges are built as a means to assist people in getting over the things that obstruct their path. As Chiari patients (Chiarians), we are constantly facing obstacles, not just from the toll our conditions cause in our bodies, but the medical gaslighting that we face adds insult to injury. So, we decided to build a bridge! Chiari Bridges is a non-profit network built by Chiarians for Chiarians. We seek to empower patients (and their families) to better advocate for themselves. We do not sponsor research; instead we read the research that most of our doctors don't! And with it, we aim to provide information that is substantiated by published studies, in a way that is easy to understand and encourage readers to not only read our articles but look up every study for themselves and read that too. Print it out and sit down with a highlighter; read it as many times as necessary until you understand it; then use it to talk to your doctors. Our doctors are under no obligation to read our articles, but they should be willing to read officially published studies from journals, especially those specific to their profession. If we as patients want the care that we deserve, we first need to make ourselves knowledgeable on our conditions so that we recognize the medical professionals that simply don’t know enough to treat us. Chiari Bridges is not affiliated with any physician or medical group. You should in no way use this site as a replacement for diagnosis, treatment, or medical advice from a qualified medical professional. Instead, this is intended to help patients better understand the confusion surrounding Chiari and its comorbid conditions and why 40-50% of Chiari Decompressions fail, so patients are empowered to advocate for the care they deserve. Note: Some of our authors have written under pseudo-ghost names in fear of retaliation from their doctors. The information provided on our website is strictly for educational purposes in order to help further the understanding of Chiari, and its associated conditions. Our goal is to share our collective experiences and the information we have gathered, with those still suffering and in need of answers.

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