Chiari Awareness Rally Online (Week 3) - Chiari Bridges

Published: 18 September 2022

Written by Administration Team

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Chiari Awareness Rally Online (Week 3)

When

09/18/2022

10:30 am - 12:00 pm

Event Type

Online Support Group

TOGETHER, WE WILL MAKE OUR CONDITION(S) KNOWN!!!

Do you ever feel dismissed by your medical professional(s)? Have you ever spent hours or days writing out your symptoms so that you don’t stumble with your words, only to feel like it’s falling on deaf ears? Is there anything worth salvaging in your relationship with your doctor? At what point should you look for a new doctor? What about your other relationships, do you ever feel like they believe the doctors over you? Do you love someone with Chiari and struggle with letting them know how much they mean to you? Is there a way to heal damaged relationships? What is Palliative Care? Who can qualify? Could it be beneficial to pursue? Are there problems associated with getting referred?

AGENDA FOR WEEK 3: (full event schedule)

HIGH INTRACRANIAL PRESSURE

- Causes
- Treatments
- Post-operative complications:
  - Pseudomeningocele
  - Failed decompression
- Symptoms
- Cranial Leaks

LOW INTRACRANIAL PRESSURE

- Spinal Leaks
- Causes
- Treatments
- Post-operative complications:
  - Failed decompression
- Symptoms

RELATED COMORBIDITIES

- Acquired Chiari Malformation

CONNECTING THE DOTS: HOW IT RELATES TO YOUR CONNECTIVE TISSUES

GETTING PROPER DIAGNOSES

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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