The Chiari Chronicles: YAY!

Way to go SCOTUS! Today is a beautiful day! #MarriageEquality #LoveIsLove

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)

The Chiari Chronicles

Friday, June 26, 2015

YAY!

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