My Story of Craniocervical Instability, ME/CFS, and Tethered Cord
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- Not stated
- Published
- Undated
Summary
Jeff Wood's treatment progressed from a Philadelphia cervical collar (worn over a month) to a halo brace with four skull screws (worn several months) to skull-to-C2 fusion surgery in early 2018, guided by a dynamic CT scan with flexion and extension views; no medications or the surgeon/procedure name are given. Beforehand he had severe ME/CFS for several years, including roughly five months of total bedriddenness across hospital stays (122 to 143 days), dropping to 117 lbs, unable to shower or feed himself, sometimes unable to speak or write, with heart rate swinging from the 30s to 150s bpm and oxygen saturation dipping into the 80s during sleep. After the halo brace achieved maximum skull elevation his POTS remitted and standing heart rate normalized to 82-86 bpm, and post-exertional malaise stopped occurring entirely, along with restored cognitive function. He reports POTS and PEM "remain gone today," describing sustained, complete ME remission since early 2018.
What they credit
Credits Craniocervical surgery, Hyperbaric & oxygen, POTS medication, Surgery & structural, Craniocervical fusion / tethered cord.
Symptoms mentioned
Symptoms: POTS & dysautonomia, Post-exertional malaise.
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