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Not only Angels wear halos.

Updated: Sep 21, 2019


Halo Selfie

Yes, it is as horrible as it looks. I had to wear it for over 3 weeks and do everything in it including sleeping (weirdly less problematic than anticipated). This was put on while I was under (bad) sedation. As the sedation was not effective due to my Ehlers-Danlos I pretty much remember it all. Including the fact I was naked while they put the vest on. Luckily I also remember the scrub nurse trying hard to hide my modesty when she could. That also means I could feel the screws being put on so tight they were right against my skull. I had previous exposure to this so it wasn't too insane and much easier than when I was fully awake with just local having my invasive traction put on. That is another story!


So for the first week in my halo I was in hospital doped up something lovely. Having sharp pins into your skull kinda hurts. Not being able to move normally and having all the different weight really did a number on my EDS body. With a number of dislocations. Eating was fun as well as I could not look down to see or cut my food. So there was a lot of finger foods and avoidance of spaghetti.


Then I went home and fended for myself......

Halo hair

I was very happy this wasn't summer as the chest piece is covered in lambs wool and the other half decent cover up was a jacket. Otherwise I just wore a singlet under it as that was the only thing I could manage to change.


The purpose of this Halo was diagnostic. As I have CCI/AAI and the literature surrounding the efficacy of the surgery is still a bit iffy, this was like a trial fusion. So we wanted to see how my body would react when my neck was in the correct position. The biggest objective measure we saw was the change in my heart rate. Usually if I am out strolling my heart rate is at least 150bpm, if I am doing anything like vacuuming or stressed it jumps over 180bpm. While I had my halo on there was a bit of an accident. One rainy night I leant forward to pickup a charger and I whacked my halo on the cheap plastic fan I had. This caused a massive flash of agonising pain as the pins were slammed into my flesh and skull. When I woke up the pins had shifted and half the halo was off! So I had to get an Uber to the other-side of town during the rain. Then to top off all this stress off the elevators were down and I needed to get to the 3rd floor!!!


I actually managed to get up those three-flights (much to the amusement of other stair-dwellers). Normally this would have killed me and even my doctor was surprised not to see me passed out somewhere on the way. All up my heart rate only reached 130bpm! Which for all the stress and lugging such heavy device wasn't half bad. That was how we knew things were going in the right direction. I also wasn't dislocating my neck when I yawned to being woken by reflux trying to asphyxiate me a as it went down my lungs.


I presented my case and halo-ed self to the complex spine team with my neurosurgeon and everyone gave me the thumbs up for moving to surgery next.


That story to come!


Help financially - https://www.gofundme.com/keep-kirstins-head-on

More Info -

https://kirafaye.wixsite.com/kirstinscause #kirstinscause

#cci #eds #chiari


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