Stories of Syringomyelia

SYRINGOMYELIA STORIES

VIEWS

BY

REGISTERED NURSE ON A MISSION TO HELP OTHERS WITH SYRINGOMYELIA

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. I HAVE A...

1744

7/13/26, 11:54 PM by Beth Nguyen

IDIOPATHIC SYRINGOMIELIA... OR IS IT?

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...

1415

7/13/26, 11:54 PM by Eric

THIS CRAZY ROLLER COASTER RIDE

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 ...

1410

7/13/26, 11:54 PM by Alana

MY STORY

I was in a car accident on july 10th 1999 and was ejected through the windshield. It wasn't until 2006 that I became symptomatic and was disabled permanently in 2008. I have syrinx in thorasic and cervical and have had a drain placed in the cervical ...

1108

by Jennifer

Is Syringomyelia contagious?