Stories of Syringomyelia

STORY
Syringomyelia stories
Hello Everyone! My name is Beth Nguyen RN, CEO of Worldwide Syringomyelia & Chiari Task Force.  I am 38 years old with a diagnosis of Syringomyelia, Intracranial Hypertension, POTS dysautonomia, Heart Failure, and Pulmonary Hypertension.&nb...
Syringomyelia stories
I developed a syrinx from t1 - t8. Loss of temperature feeling in left arm, shooting pains down left arm. Had a shunt placed, post surgery had sensory loss down left side and in my right leg. The shunt failed and the syrinx was growing fast again. We...
Syringomyelia stories
Syringomyelia stories
In 2007 I was diagnosed while pregnant with my son. I remember the dr calling and saying I had a rare condition called syringomyelia and I said syringo-what? I remember that phone call like it was yesterday. I was told I needed surgery ASAP but they ...
Syringomyelia stories
I have 3 children with Chiari malformation and a spouse. Each child has their own other conditions that affect them daily

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Statistics of Syringomyelia

44 people with Syringomyelia have taken the SF36 survey. Mean of Syringomyelia is 1077 points (30 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

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