It's been 13 months since my craniocervical fusion surgery and 7 months since my tethered cord surgery. My diagnoses were craniocervical instability, tethered cord, ME/CFS, MCAS, POTS, and mold illness (which may or may be fully explained by MCAS). 1/n
Before my first surgery, I couldn't sleep inside a house b/c of mold illness/MCAS. I got paralyzed, unable to speak, and barely able to breathe, sometimes 8 or more times a day. This could result from tilting my head back, speaking too much, a loud sound, a tap on the head. 2/n
Traction (pulling my head away from my body) brought me back from these episodes. I couldn't ever be left alone. I wasn't bedbound, but I could do essentially nothing for myself. 3/n
By that point, my symptoms were extreme even for CCI, and they were quite unusual for ME/CFS. But I started out with classic ME/CFS -- PEM, POTS, unrefreshing sleep, cognitive impairment, low NK-cell function, wacky cytokines, sky-high IGGs for a bunch of viruses. 4/n
The last year has been HARD. These surgeries are brutal and hard to recover from. Needing a second surgery when I hadn't yet fully recovered from the first was emotionally and physically rough. 5/n