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
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
This is a slightly more technical piece with a lot of jargon - my apologies. It is geared toward people on the path to determining if they have cranial cervical instability and have some knowledge of this topic. I am happy to answer any questions readers may have. My neurosurgeon offered two "appetizers" to go … Continue reading I needed that like a hole in the head: what my invasive cervical traction and ICP bolt tests revealed
A glass half empty "Two steps forward, three steps back" has been my mantra these past three weeks (week 3-6 post-SFT surgery). My brain feels as if it has been suspended in an opaque, viscous fluid that mutes and confuses my days. Since my last update, it's as if I have been inside a cocoon … Continue reading Six weeks post-SFT
This blog will chronicle my progress after detethering surgery (SFT) on 8/19/2021. I expect my healing to be non-linear but hope for an overall upward trajectory. You can read more here and here for background on my surgery and why I decided to go forward with it. Check back here for future updates. THREE WEEKS … Continue reading Post-surgery updates
I had invasive cervical traction (ICT), the intracranial pressure bolt test (ICP bolt) on August 17th, and sectioning of the filum terminale (SFT) surgery with Dr. Bolognese on August 18th, 2021. In this blog, I share some tips that helped me survive Mount Sinai Nassau Hospital, where Dr. Bolognese does his surgeries. I start with … Continue reading A survival guide to Mount Sinai South Nassau Hospital (MSSN)
After deciding to have surgery, I felt a sense of relief because I finally could put down all of my what-ifs and relax into the decision. Everything seemed to be falling into place. I looked forward to turning over a new leaf of feeling less intense about life and my illness. Such lofty feelings gave … Continue reading Surgical clearance
Frozen in Amber 