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Life update!

It has been a long time and a lot has happened, not much good. There has been some personal issues I wont discuss but it has really pushed me back physically and emotionally I am still working to crawl back from. Covid has been quiet here in Australia compared to other countries and I have remained safe.



Zebra print over the shape of Australia with Ehlers Danlos Australia across is.
Ehlers-Danlos Australia Logo

I have been mainly crafting and completing the EDS Australia website. Check it out at https://kirafaye.wixsite.com/edsaustralia website which I will be finalising with its own domain a bit later and the Chiari and Syringomyelia Australia . CCI website and research next! I have been trying to create my new medical team since my move interstate. Covid defiantly impacted doing this.


I have been going back and forth between my neurosurgeon (Telehealth has helped saved me a lot of money and stress travelling. Our current thoughts are continuing with the occult tethered cord being an underlying problem. This issue has been brought up by several doctors since 2010. Initially the first doctor went investigating due to my herniated brainstem. However, we got sidetracked with me needing brain surgery 3 at the time. In 2017 I brought it up again when I started losing feeling and movement in my feet. Yet again we started testing, but I got diagnosed with Intracranial hypertension and needed brain surgery. Finally when I was chasing up help for my craniocervical instability I started seeing a neurologist. He did some nerve conduction testing that showed nerve damage in my right leg. He said this sort of results would make him consider an MRI for tethered cord. The problem being, the type they believe I have is occult type. Occult literally just means hidden, so it doesn't show up on scans. So we have to use tests and clinical considerations to decide on spinal surgeon. Then I got my fusion! I swear each time I look into this I get some sort of brain or spine surgery!


So that leads us to where we are now. My surgeon sent me for urological testings. The urologist found bladder dysfunction that wasn't there a few years back. We tried the medication but it impacted my heart rate thanks to my POTS. So he offered either botox or an implanted bladder stimulator if neurologically we can't help it.


So back to the neurosurgeon. Sadly there isn't much literature out there for him to feel easily comfortable for performing spinal surgery. So I am being sent to redo the nerve condition testing and see if there has been a change, especially after the fusion. The fusion can add extra traction and create a tug-of-war on the spine and I defiantly have had issues post op worsen.


My cardiologist has agreed that most of my issues are neurological and he is happy to help where he can, but didn't feel he could offer me much more within his skill set.


I'm seeing the dermatologist next week which is massively overdue. I don't talk about it much but I have both keratosis pilaris and dermatillomania (skin picking). So the skin on my arms has looked horrible for years. So it's finally time for me to finally check this out.


I have to find a new respiratory specialist here. I have had a lifetime of asthma that needs ongoing help. However, my last lung function and blood tests showed low venous oxygen, small airway disease and airway inflammation. On top of this I have some allergy issues that I need treatment for. I am hoping to find one who might also know a bit about Mast Cell issues as my new GP agreed that I likely have it (testing here is not accurate yet) with my skin and respiratory reactions.



Large box with Rollz Motion Rollator and Wheelchair written on it
Rollz Motion Box

Finally I got a new walker! check out my review here! Next week I also get my wheelchair so keep an eye out for that post. It kinda sucks to be needing all these need walking aids, but it will hopefully allow me to get out more.


Find me on instagram

https://www.instagram.com/fiberartfables/

Check my fundraiser: https://au.gofundme.com/f/keep-kirstins-head-on

Check my website for more info: https://kirafaye.wixsite.com/kirstinscause

Chiari Australia: www.chiariaustralia.com.au


#chiari #craniocervicalinstability #ehlersdanlos #dysautonomia #kirstinscause

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