Sean spent his first 39 years living at 100 miles an hour: running, lifting, volleyball, travel, and a career he worked his tail off to build. A preventative scan found a syrinx he thought nothing of, until the left half of his body went numb.
His story
The first 39 years of Sean’s existence were filled with living life at 100 mph. Sean was physically active, enjoying things such as running, weightlifting, travel, and many years of volleyball, and he worked his tail off to build his career. All that “living” came to a crashing halt on 12/13/2024.
For his 30th birthday, he went in for a preventative MRI scan with Prenuvo. One of his findings showed a syrinx in his spinal cord at C6. Sean thought nothing of it until a year later, when the left half of his body went numb. His physical health started to spiral as he experienced an onslaught of symptoms. To name a few: brain fog, skin pain, extreme sensitivity to temperatures, overreaction to touch, loss of strength (he could hardly lift his arms), a strange humming throughout his body that made it hard to stand, endless twitching, and struggling to sleep.
Determined to get better, Sean dove into researching syringomyelia and potential treatments. Frustratingly, his search for care and management came to an abrupt dead end.
Sean saw multiple doctors (neurologists and neurosurgeons) and had a dozen scans. He found himself explaining more about his condition than the depth of the doctors’ own knowledge of it. He was even told by his neurosurgeon that his symptoms could all be in his head, despite discovering a second syrinx, this time in his thoracic spine.
Moving forward
Sean has decided to take matters into his own hands and make lifestyle changes, including diet, modifying exercises, fasting, and focusing on mental health.
Sean is far from healed, but over the year his symptoms have improved and he is living a more fulfilled life through balance.
Sean’s statement
I am grateful for the I AM HEARD Coalition for being a beacon of hope that anyone dealing with this terrible condition needs. There are so many questions to be answered and I’m thrilled the I AM HEARD Coalition is in our corner fighting for our ability to have a healthier future. We are not alone. I empower myself. I keep moving forward. I will fight another day!
He found himself explaining more about his condition than the depth of the doctors’ own knowledge of it.
Your experience could be exactly what someone else needs to hear.
Stories like Sean’s are why our programs exist. If you are living with syringomyelia or one of its associated conditions and want to share yours, we will write it with you and you review every word before it is published.
In photos: Sean
