Tag: hEDS

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

IV saline for dysautonomia in ME/CFS and long COVID

~ Caroline Elizabeth ~ Leave a comment

There are no FDA-approved treatments for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, a problem patients are acutely aware of. Despite this shortcoming, there is one treatment that has the potential to give people with these diseases a boost in physical and cognitive function: intravenous (IV) saline. I wish people with ME/CFS and long … Continue reading IV saline for dysautonomia in ME/CFS and long COVID

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

Three month post-SFT surgery update

~ Caroline Elizabeth ~ 1 Comment

Chronic illness dismantles our life force, but what does it look like to reassemble it? As I reflect on the three-month mark since my surgery for tethered cord syndrome, I realize that recovery can't be captured by a list of symptom improvements (though scroll to the bottom to Table 1 for the TL; DR version). … Continue reading Three month post-SFT surgery update

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