November 2021

So, I had a full spine CT scan & my 4 halo pins switched out for 4new ones in different holes yesterday- and they’re all tight and secure again now.

I got home last night & im having a chill day in bed today…. Poppy had a good sniff of my head before rubbing her neck all over like a cat!

I’m waiting for answers about the scans & bone fusion/broken screws etc, & Im going to be going into hospital sometime to have some inter-cranial pressure monitoring with tilt table testing at the same time…. to investigate if my brain pressure is raising/falling too much & contributing to my severe scary symptoms. Apparently this can actually cause seizures and for you to stop breathing too… so it’s defiantly worth investigating.

It’s all a big scary puzzle…. Let’s hope we get some fixable answers to make life more manageable, as I can’t live in a halo forever! Having a shower or a cuddle from my niece seems like a distant memory!


Thanks for all your continued support. We are still fundraising to pay for specialist opinions on my scans since my case is so complex, and also my daily bone injections needed to aid the fusion.



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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