Stories of Syringomyelia

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
I have 3 children with Chiari malformation and a spouse. Each child has their own other conditions that affect them daily
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 ...

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Statistics of Syringomyelia

45 people with Syringomyelia have taken the SF36 survey. Mean of Syringomyelia is 1068 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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