The surgery

What is EDS and CCI - picture of pinned skeletonThe specialist life-saving spinal and brain surgery Mel underwent is based only in the USA & Spain. The surgery entailed decompressing and fusing Mel’s skull to her neck using metalwork.

It is a long and risky surgery especially on complex EDS patients like Mel, with a long recovery period until the bones fuse together providing the stability that Mel desperately needs!

However, Dr Gilete neurosurgeons recently been using the technique to operate and fuse EDS patients successfully & treat EDS / CCI patients from Europe, with a good success rate!


Mel’s case of Cervical Instability was said to be very extreme, (thought to be one of the worst in the world) and the true extent wasn’t known until she arrived in Spain and had a special video X-ray, where her skull and entire Cervical spine were found to be dislocating and triggering the seizures until traction was applied.

Upon making this discovery Mel was rushed into theatre to have surgical halo fitted to fully immobilise her skull and neck, keeping her safe until the fusion surgery.


This surgery was much more extensive than expected and involved a decompression (skull bone removal) followed by fusion of the skull and ENTIRE Cervical spine, to thoracic level 1, with titanium rods, plates and two large ribs as bone grafts. Lots of traction had to be applied to realign all the bones into a position where the brainstem was not going to be compressed causing seizures, and Mel was kept in the halo and ventilated in an induced coma following the 10hr surgery.

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During this surgery it became apparent that Mel’s lower spine and pelvis were also dangerously unstable and were dislocating during the Cervical surgery, resulting in fears that she may become paralysed. So the decision was made to fuse her spine 2-3weeks later after a short recovery period.

She was fused from thoracic level 10, right down to her sacrum/pelvis, and her SI joints! A tethered cord release was also performed to release her spinal cord, this surgery was extensive and again she was placed ventilated in a coma in ICU. Upon waking from ICU Mel immediately regained the use of her right leg and foot which had been previously paralysed- the first indicator of how successful the surgery had been!


Mel returned home now home and was building up her tolerance to be able to sit upright in her wheelchair for longer periods of time… she hadn’t suffered a single seizure since the fusion surgery! Proof of how worthwhile and nesscercary the surgery actually was!


Until her fusion broke, and after for revision surgeries and a full spine fusion skull to pelvis, she has now had to be put into a surgical halo until we can fundraise to get her to the US to have her broken fusion repaired.

The halo is the only thing currently keeping her stable and when it is removed she is bedbound and suffers constant seizures and life threatening respiratory arrests.


Thank you to everyone who was supported #MelaniesMissionToLive, we desperately need your support again!

  • Any additional funds raised will be used for any future treatments or equipment needed that is not available on the NHS.

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