The Fusion

Around 13weeks ago I had my skull fused to my spine and my spine fused down to the C4 vertebrae. This was an endeavour that took a decade of pain and stress that finally occurred. For a quick WHY did I have this done... I have a condition called Ehlers-Danlos which makes my connective tissue (the glue that holds me together weak). I also have another condition called Chiari Malformation and the surgeries required the removal of part of the base of my skull and the back of the first two vertebrae. So combining this removal of structural parts and having shoddy glue meant the 6kg of my head was no longer able to be held up. So I developed a condition called Craniocervical and Atlanto-Axial Instability and Cranial Settling. Follow the links I have put on these disorders to learn more.

It took me a decade because when I first heard about it (yay medical science degree helping research) it was only just being investigated. It has taken them this long to get the info somewhat mainstream. Doctors were happy to diagnose me, but not happy to permanently fix my spine at that age with the limited research. I finally found someone who would take the risk and he worked very hard behind the scenes getting educated.

So I had a horrid early wakeup call and met my family at the hospital. I was called back and my father came with me while they did all the pre-op stuff. Being me nurses recognised me and I was dressed in the ultra attractive attire. They even added a cool device to my forehead to measure my alertness (I may have been awake during sedation last time). I was wheeled to the Surgical Prep Area and got the Anaesthetist busy trying to get a vein that works (didn't first up). Then as I am used to they give me the sedation and I slip into nothing.


The next thing I know is pain. After 15 surgeries I know waking up in pain is common and expected. But this was worse than normal. All I remember is lying there groaning and having someone (family) holding my hand. What I am to find out later is the anaesthetist really didn't listen to my advice about pain control that previously worked. So the poor ICU staff were working hard to help me and my sister (a doctor) being very angry because she knew how to help but couldn't. Eventually, we got my ketamine line started and I settled. I spent several days in ICU and it is hard to recall specific events in order. I also found what was meant to be fusion to C2 was extended to C4 due to the complexity of my anatomy (I was aware they would fuse what they found was needed). As I had a shunt to work around, mesh they had to put my skull plate above and were unable to visualise my vertebrae well due to the lack of lamina and scar tissue build-up (which required some surgical intervention). My artery did get hit and I lost half a litre of blood. But that was the only complication. They also cleaned up my scar as the combination of Ehlers-Danlos skin and slicing it open for the 4th time had it very unhappy!

CCI Fusion C0-C4

I did have a big pain issue that occurred, which may have been due to a loss of CSF during the surgery that resulted in me being wheeled to radiology late at night in agony to get scans (which I am still paying off). When they finally stabilised me I was moved to the ward. I stayed in hospital 2 weeks total and due to my poor health and lack of support at home (my parents are interstate) I was sent to rehab. My parents went back home, just in time for my sister to be admitted to the hospital in their state. So my poor dad had both his daughters hospitalised at once many miles away. She luckily was only in briefly and was able to get it sorted. Rehab was good and bad. Most of the issues was based on a lack of preparation. I wasn't aware I would be going there so I didn't pack what I needed. Including a phone charger (the previous hospital has USB plugs). I spent 2 weeks there missing my pets. I had a lot of physio, though I really felt it wasn't that helpful, but not having to care for my basic needs for 2 more weeks and rest was a benefit. The nurses loved me because I was super quite and never buzzed them.

Part of the scar healing (rest hidden in hair)

Its been 13weeks now and am I better? Yes and No. The Surgical site has healed. I still get some pain from it and I can feel the screws from just touching the back of my head. I still have headaches, but they could be from my suspected low intracranial pressure. I am also losing more feeling in my feet, pain and my walking has become compromised. But that will be the next adventure for the doctor who I see very soon. It's likely with my cord being tethered tha the fusion caused it to stretch more and cause issues. We kinda anticipated it but one surgery had to be done first and the fusion was more urgently needed.

So after 10yrs we got it done!

Now for the issue I have been putting aside for only 7yrs.

Help financially -

More Info - #kirstinscause

#cci #eds #chiari

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