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Early posts were done by my rock (also known as my dear husband (DH) Bobby).
About Arnold-Chiari Malformation
Arnold-Chiari malformation (ACM) is a condition where the brain stem (the part of the brain which controls involuntary body responses such as the heart beating and breathing; compression of the cranial nerves; and disruption of the flow of cerebrospinal fluid) herniates into the space normally occupied by the spinal column. Symptoms can range from chronic to acute headaches, dizziness, tinnitus, incontinence, foot drags, extremity weakness and all types of "strange" pains and "feelings" all over the body. Often misdiagnosed as MS, or other neurological diseases, some AMC's symptoms can be kept at bay with meds, these treatments are far from a "cure". Many times individuals with ACM are also afflicted with hydrocephalus, syringomyelia, seizure disorder, scoliosis, tethered cord syndrome, craniocervical instability, and Ehlers-Danlos syndrome.
Sharon"s story
On a typical November evening 2002, I got a bad headache at dinner time. It has never gone away. In January 2003, I was diagnosed with cranial settling or basilar impression. In 2006 I was diagnosed with EDS. With each successive diagnosis, DH and I were more and more devastated. We were told I would have to undergo risky brain surgery some day. That day arrived on June 12th 2007.
Saga of life with Chiari after the endless headache began
Diagnosed with Scoliosis (age 14), Basilar Invagination/Retroflexed Odontoid, Platabasia, Ehlers-Danlos Syndrome, herniated disk(C6-C7),Chiari Malformation 1 and Obstructive Sleep Apnea.
Although I am not Native American, a dear Cheyenne friend gave the name of "Sitting Porcupine" after I related to her the story of how the 1st porcupine I had ever seen sat in the road in front of my truck and would not move.
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