2022 – UPDATE 8 months in a halo

I’ve been pretty quiet  of late as things haven’t been great. I’ve been suffering a lot of serious neurological symptoms and pain, cracks and clunks, from instability in my neck.

I’ve now been in the halo for 8months! And although my mum and I are now pros at the “shoe shining” technique for washing underneath it, and I’ve accessorised it with everything from flowers to a tiara, it is not fun. No showers, no cuddles or kisses -(without giving people a concussion themselves), everyone staring at you, and that’s without the fact that it is painful, uncomfortable and claustrophobic – being trapped with a cage around your head 24/7.

My neurosurgeon Dr Gilete has reviewed my case again, and after studying my recent scans it is evident that although I’ve fused well in the majority of my spine, I’m still unstable where the screws were broken during intubation in the U.K.

The broken screws are at C1 (right up at the skull) and T1 the base of the neck… So the halo can not be removed, as it is too dangerous. It is keeping me alive right now.

Unfortunately although the the halo can not be removed; it can not be left on permanently as there are risks, such as brain infections and also pin sites are limited after needing so many halos previously!

So we need a surgical solution ASAP. Together Dr Gilete, his wonderful PA, and myself are searching worldwide for the best surgical solution.

He is in talks currently with experts in different specialist stabilisation techniques, from different countries in the world such as India and America.

I’m immensely grateful that he is still looking after me and is determined to find a solution to help me, and save my life.

Nothing is impossible & I can not be left like this, but it is going to be costly and so I desperately need all the help I can get with fundraising to save my life.. Again!

Thank you all for your incredible support over the years, and I hope you will continue to help me on my mission to live- and give my story the happy ending I’m fighting for.

Much love,

Mel x

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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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