Cranio-Cervical Instability (CCI) is where the neck can no longer support the head due to weak ligaments. As a result the junction between the top of the neck & the skull begins to sublux and slip out of place. This causes the brainstem and spinal cord to be compressed, or crushed by bone.
In severe cases it is life threatening. Mel’s prognosis without surgical fusion (of the skull to the neck) is progressive decline in neurological symptoms. In worst case scenario, patients suffer total paralysis and even death.
It is often described as being like a pumpkin (the head) on a toothpick (the spine). She must wear a neck brace 24/7, suffers horrendous, unrelenting, agonising pain; several episodes of paralysis from the neck down each day. Visual and hearing problems including constant Tinitus, Nausea, huge CSF leaks, seizures up to 40x each day, even during sleep.
Mel often needs support from paramedics & emergency treatment in resus. She is unable to sit up without triggering seizures and so is catheterised and bed bound. If Mel moves her head the joint subluxes causing a seizure, followed by temporary paralysis until it relocates with an audible pop, often causing Mel to be in agony and triggering another seizure.
To learn more please visit: http://www.thepainrelieffoundation.com/craniocervical-instability/
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