What is CCI?

What is EDS and CCI - picture of pinned skeletonCranio-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.

Mel’s neurological symptoms are worsening day-by- day so the cause #melaniesMissionToLive was established! YOU CAN MAKE A DIFFERENCE, so please donate today!!

To learn more please visit: http://www.thepainrelieffoundation.com/craniocervical-instability/


If you’d like to sponsor our cause please visit our donate now page. If you can provide support of any other kind please get in touch today by visiting our contact us page. Alternatively, please email info@melanies-mission-eds.org.uk or engage with us via social media.