Post-surgery updates

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

A survival guide to Mount Sinai South Nassau Hospital (MSSN)

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)

Flying for surgery during the pandemic

Like most with ME, I have worked pretty hard not to get COVID. My goal was to keep my family and me safe until the vaccines arrived, knowing the pandemic is not over, and we are still at some risk while vaccinated. Even with my doomsday mentality, I never could have guessed I would be … Continue reading Flying for surgery during the pandemic

Surgical clearance

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