We all know what it's like to suffer through pain that others can't understand. Most of us know what it's like to have doctors dismiss our symptoms simply because something is "rare." Still, far too many of us know the heartbreak that comes when family members believe what the doctors are dismissing instead of believing us. Not one of us is alone in this. We're all struggling in the same boat. So let's stand united with each other.

September is Chiari Awareness Month and each Sunday during the month of September we will be rallying together to make the reality of our conditions known!

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 hindbrain prolapse? 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 we have so many symptoms that doctors think are unrelated?

Sunday, September 4, 2022
10:30am-12:00pm (PDT) link

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

Are there other conditions that can cause a hindbrain herniation? What are they and what are their symptoms? Can a posterior fossa be measured? 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?

Sunday, September 11, 2022
10:30am-12:00pm (PDT) link

COMORBIDITIES TO CHIARI
• Cranial Settling, Craniocervical Instability, Atlantoaxial Instability
• Tethered Cord & Occult Tethered Cord
• Intracranial Pressure Problems
----- CSF Leaks & Intracranial HYPOtension
----- Intracranial HYPERtension & Venous Hypertension
• Ehlers-Danlos Syndrome

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? 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?

Sunday, September 18, 2022
10:30am-12:00pm (PDT) link

DEALING WITH DIFFICULT DOCTORS
• Incomplete/wrong diagnoses
• Chronic Pain Rights
-----Chiari Action Network (C.A.N.)

SAFEGUARDING OUR RELATIONSHIPS
• Family
• Friends

PALLIATIVE CARE

With so much out of control, it’s often hard to remember that there are things that we can often do to improve our quality of life. Can diet and certain supplements help with some of my pain? How important is exercise? How do I try to exercise when I hurt so badly? Can stress cause a chain reaction that causes my pain to flare? Can I help reduce my brain fog so that I can think straight? I feel like I’m quickly losing everything and there’s no hope in sight. Can I ever get a handle on all of this?

Sunday, September 25, 2022
10:30am-12:00pm (PDT) link

HEALTH & FITNESS
• Eating Wise with Chiari & Comorbids
----- Are supplements good or bad?
• Exercising Wise with Chiari & Comorbids
• De-stressing Wise with Chiari & Comorbids

CALMING THE CENTRAL NERVOUS SYSTEM & CONTROLLING INFLAMMATION

EMPOWERING YOURSELF WITH KNOWLEDGE
• Learning about your anatomy & conditions
• Getting familiar with your imaging
• Connecting with other patients