One-year tethered cord surgery update

Transformation What a year a difference can make. One year ago, I flew home from New York after having surgery to fix a tethered spinal cord - a manifestation of my hyper-mobile Ehlers Danlos Syndrome (hEDS). I woke up after my surgery on the precipice of transformative emotional and physical healing - an experience several … Continue reading One-year tethered cord surgery update

Six month post-tethered cord release update

Time for a six-month update on my spinal cord surgery on August 18, 2021! I'll try to keep it brief (haha). TL; DR - it's mixed. Bladder: I had high hopes for bladder improvement, which rapidly vanished in the initial weeks after my spinal cord surgery (called sectioning of the filum terminale, SFT). My bladder … Continue reading Six month post-tethered cord release update

Blunted heart rate and implications for pacing in ME/CFS

In a nutshell: Chronotropic incompetence (CI) - the inability of the heart to keep pace with increased activity - is common in myalgic encephalomyelitis (ME/CFS)CI is worse in women with ME/CFS but both men and women have a lower than expected heart rate at the anaerobic thresholdCI is worse in those who have a more … Continue reading Blunted heart rate and implications for pacing in ME/CFS