This surgery fuses people's skulls to their spines to treat ME-overlapping condition
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 8 years
- Published
- Apr 2025
Summary
Jen Brea underwent craniocervical fusion performed by Dr. Paolo Bolognese, using two 2.5-centimeter titanium bars and six screws to fuse her top two vertebrae to her skull and lift her head by 4 millimeters, followed about two weeks later by tethered cord surgery to address spinal cord compression that had worsened after the first operation. She had suffered severe myalgic encephalomyelitis for about seven years after a 2011 coxsackievirus B infection, developing POTS and becoming bedbound for extended periods with loss of consciousness on standing. After the fusion she said she felt like she could finally breathe again and that her blood was getting enough oxygen, her POTS went into remission, and normal function was restored in multiple areas of her body. The improvement appears to have held, since she remained active afterward, including working on a documentary about her experience.
What they credit
Credits Craniocervical surgery, Hyperbaric & oxygen, POTS medication, Surgery & structural, Craniocervical fusion / tethered cord.
Similar stories
-
The Mechanical Basis of ME
Jeff Wood became severely bedridden with post-viral ME around 2015 and, after two years developing his "Mechanical Paradigm" theory that connective-tissue problems underlie some ME cases, reported achieving full remission. The 2022 article confirms his…
-
Mallory's Dangerous Spinal Treatments Eventually Work
Mallory had ME/CFS with several comorbid conditions and was mostly bedbound for around nine years. He pursued two experimental spine treatments: GHK-Cu peptide injections to stabilise his spine, and frequency specific microcurrent for a tethered cord, which…
-
ME/CFS in remission from Mold Avoidance
Despite comorbid craniocervical instability, mold avoidance "still helped" and affected symptoms like sound sensitivity and POTS, which he calls "the most impressive [treatment] I've done YET." He says he never achieved full remission from mold avoidance…
-
Craniocervical Instability, Neurosurgery and M.E.: Just the Facts, Please - An Editorial by Jeff Wood
After years bedridden with severe ME and a craniocervical instability diagnosis confirmed with objective structural testing, Jeff Wood had skull-to-C2 fusion surgery in January 2018, followed by a second neurosurgery to release a tethered spinal cord. He…