CCI and Tethered Cord

Hypermobile patients of all types (EDS, HSD, Marfan, OI, Sticklers) are all quite prone to cranio-cervical instability (CCI), settling (CCS), Chiari malformation, tethered cord syndrome (TCS), and CSF leaks and leaking. Some people are struggling to avoid internal decapitation in some cases. Many have signs of CNS apnea as a result too.

(This makes sense if you think about the skull settling at night lying down, especially if you have a retroflexed odontoid that might be stabbing you in the back of the brain stem. I actually had to remember to breathe even in the day time at my worst in 2012. It slowly resolved as I took more vitamin C.)

Few doctors recognize and understand this yet. And yes, you could actually have ALL OF THE ABOVE IN THE SAME PATIENT in some rare but unfortunately cases. Do not let your doctors dismiss this or you! Updated March 8, 2023

Links on Cranio-cervical instability, Chiari, Tethered cord and CSF Leaks and leaking