Post op update, mixed emotions


So a lot has happened in a short space of time… one thing being the day we planned to reattach the halo, my neck started constantly clicking again and I had a seizure and stopped breathing… this was the first one post op.

So, I was put back into the halo straight away to keep me safe. I have all the new bone grafts in there and I MUST buy and take the injections to stimulate bone growth and fusion…& use my bone stimulator machines (all which need funded privately).

Obviously I was devastated & I’m really gutted as this proves it’s the broken screws stuck in there causing the remaining symptoms when out of the halo, as my skull and all the other vertebra in my spine are now stable and held securely posteriorly (from the back))- other than where those broken screws are- C1+2 and C7+T1 (the top & bottom of the original fusion that was broken).

I came to the apartment yesterday via ambulance as they want me on bedrest as much as possible to keep everything still and help it to fuse.

Dr Gilete has been researching and talking with other specialists in Spain about how to stabilise my C1/2 better but…. posteriorly there’s no more room & there are big fragments of broken screws inside the vertebra, where it was broken and snapped- and they’re stuck in there… right in the way inside the vertebra.

He’s discussed an anterior (from the front) approach but as my full spine is stabilised posteriorly it’s impossible to flex my head back and so very dangerous and difficult to reach the area which is the very, very top of the neck!

So the hope is being in a halo with the bone grafts in there and additional fixation of the skull at the back,…..alongside osteoporosis treatment will allow the C1/2 to fuse naturally & make solid & stable bone.

However we are still trying to find a more secure solution, eg if another specialist could possibly fuse the C1/2 from another angle, without moving my head, and navigate around those broken screw fragments….

It’s not easy. But hopefully it can be done, & will fuse- in older times they didn’t use any metalwork and just used bone grafts and a halo alone to fuse bones…. but it’s not guaranteed to happen with my Syndromes & osteoporosis.

So once again I thank you all for your support, and I’m really grateful to Dr Gilete for keeping me safe and doing all he can to try and repair the damage that was no fault of his own…… he, Amy & the team really do care about me and look after me so well- something I can’t ever thank them enough for!

So that said, I must continue fundraising to fund the treatment to give these bones the best chance possible of fusing while the halo is on… otherwise when it comes off I’m back to potentially life threatening seizures and diaphragm paralysis etc.

In the meantime we search together for a backup plan! To fix what was perfect, before I was broken during intubation in the UK?

Thanks again,

?Just Giving:

About Melanie

PLEASE DONATE NOW to #MelaniesMissionToLive - a charitable trust fund created to fund specialised medical transport and world specialist, life-saving spinal and brain surgery for Mel (a 32yr old Newcastle University biology graduate from Cramlington, Northumberland) before its too late!! Due to Mel's complex underlying conditions (EDS and CCI) her only option for revision surgery to fix her broken fusion is to seek help abroad! WE NEED YOUR HELP

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