Category: Uncategorized

The ins and outs of IV access for saline to treat dysautonomia

~ Caroline Elizabeth ~ 2 Comments

In my last piece, I discussed practical approaches for building a case for IV saline to treat orthostatic and exertion intolerance, two primary features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID (especially those meeting the criteria for ME/CFS). IV saline helps treat various forms of dysautonomia, including postural orthostatic tachycardia syndrome, orthostatic hypotension, … Continue reading The ins and outs of IV access for saline to treat dysautonomia

One-year tethered cord surgery update

~ Caroline Elizabeth ~ 6 Comments

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

Life force

~ Caroline Elizabeth ~ 4 Comments

Living with a chronic illness is a reductionist endeavor. As pieces of us slip away and our lives diminish, we can lose sight of what it means to be a human. We are wired for connection to others, joy, love, pleasure, beauty, adventure, mystery, and more. Over time, a benevolent form of amnesia has allowed … Continue reading Life force

Six month post-tethered cord release update

~ Caroline Elizabeth ~ Leave a comment

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

When will I get better?

~ Caroline Elizabeth ~ 2 Comments

The Nevada Independent published an op-ed I wrote to address a question on the minds of many - when will I get better from COVID-19? One of the most painful aspects of the pandemic as a chronically-ill person is seeing the unfolding of one of the most significant mass disabling events the world has seen, … Continue reading When will I get better?

I needed that like a hole in the head: what my invasive cervical traction and ICP bolt tests revealed

~ Caroline Elizabeth ~ 2 Comments

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

Six weeks post-SFT

~ Caroline Elizabeth ~ 3 Comments

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

Post-surgery updates

~ Caroline Elizabeth ~ 4 Comments

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)

~ Caroline Elizabeth ~ Leave a comment

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

~ Caroline Elizabeth ~ 2 Comments

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