The Chiari Chronicles: September is Chiari Awareness Month and IIH Awareness Month!

Monday, August 31, 2015

September is Chiari Awareness Month and IIH Awareness Month!

Chiari Awareness Month officially starts today! I urge everyone to check out the Conquer Chiari website for more information, including FAQs, guides, and current research in the field.

And the Conquer Chiari Walk Across America takes place on September 19th! If you would like to walk, please check out the list of walking sites here.

If you would like to donate, you can do so here (you even get to chose the location and person you would like to sponsor with your donation!).

Also starting today is Intracranial Hypertension (IIH) Awareness Month! For more information on IIH (including news, events, and research) please visit the Intracranial Hypertension Research Foundation website. And if you would like to donate, you can do so here.

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Confused?

Terms and Abbreviations:
Cerebellum - the part of the brain that controls balance. Located in the lower back portion of the brain, just above the spinal column.
Chiari - Chiari Malformation
Cine Flow Study (CSF Flow Study) - "an MRI of the brain or spine that evaluates the flow of cerebrospinal fluid around the brain, brainstem and/or spinal cord" via Siker Medical. For more info on how one is performed, visit ASAP (note: these studies can take hours).
Craniotomy - opening the skull, usually to operate on the brain
EDS - Ehler's-Danlos Syndrome
Foramen magnum - the opening to the spinal column.
IH (IIH or PTC) - Intracranial Hypertension (Idiopathic IH or Pseudotumor Cerebri)
PCP - Primary Care Physician
POTS - Postural Orthostatic Tachycardia Syndrome
PT - Physical therapy/therapist

For more information:
ASAP - Chiari Malformation
NINDS - Chiari Malformation
NINDS - POTS
Ehlers-Danlos National Foundation
Intracranial Hypertension Research Foundation
Mayo Clinic - Factor V Leiden
Mayo Clinic - Fibromyalgia

This area is constantly being updated so check back often for more information. If you can't find what you're looking for here, please leave a comment and I will do my best to find it and post it ASAP.

DISCLAIMER

Throughout this blog, I will mention past specialists I have visited and where these specialists practiced at the time I saw them. If I had a negative experience (not all of them are!), I will share that. However, these negative feelings, unless I specifically state otherwise, are toward the doctors, not the places where they practiced. Just because I did not get the help I was looking for from one particular hospital or institute does not mean others don't or won't. In fact, I encourage others to go where I have gone, because it is entirely possible these places have the resources to help you. Just because I haven't found my solution yet does not mean you won't.

Past Specialists:
H.H. (Alt. medicine)
Dr. T (Med. management)
Dr. P (Neurologist; Johns Hopkins, MD)
Dr. B (Neurosurgeon; Chiari Institute, NY)
Dr. R (Neurologist; Johns Hopkins, MD)
Dr. H (Neurosurgeon; Johns Hopkins, MD)
Dr. A (Neurologist; Jefferson Headache Center, PA)
Dr. S (Neurologist; Private Practice, NJ)