It's how everything started for me. As mentioned in my "How it Started" blog post Chiari Malformation (and Syringomyelia) was my first diagnosis and the cause of many of my symptoms for several years before.
If you want to really get in-depth into Chiari check out Chiari & Syringomyelia Australia
I will post a quick TL;DR (too long didn't read) below to save time.
Chiari Malformation a condition where the part of the cerebellum known as the cerebellar tonsils herniate down and out of the skull. So yes part of my brain is no longer in my skull! This plugs the flow of the spinal fluid going between the brain and spinal cord and puts pressure on the brain. My type of Chiari also includes my brainstem slipping out. There are many causes as to how the brain escapes it can be crowded out by having skull deformities, or space occupy lesions, pushed out by have too much spinal fluid (Intracranial Hypertension), or pulled out by tethered cord or spinal fluid leaks/LP shunting. I haven't listed all the causes, but know they are still discovering reasons.
Most herniations are around 5-10mm of just the cerebellar tonsils. Mine is 24mm and both the brainstem and cerebellar tonsils. So it is believed seeing I have a small posterior fossa (base of the skull), intracranial hypertension and tethered cord my cerebellum is under multiple different pressures. This proved to be a problem after surgery 2 when the entire cerebellum started slipping down (ptosis) and lead to needing surgery 3 to prop it back up.
Chiari and also cause a condition called Syringomyelia where a cyst (syrinx) builds up in the spine (crushing nerves) because the Chiari has plugged up its normal pathway. When someone has a large syrinx like mine and the symptoms surgery is required for Chiari. This isn't always the case and some people are managed with medication or asymptomatic.
The Chiari surgery is called "The Decompression" where they essentially make space by removing bones, and other surgical procedures. My first surgery they removed part of the base of the skull and removed the back of my first to vertebrae to increase space. This was not effective and scar tissue build-up required them to cut my head open again a year later to remove more bone and split the lining of the brain (dura) and add a patch (taken from a tendon from my leg) to once again give the brain some more space. 6yrs later I was once again for my 3rd time having this scar cut open (hope they can following the line) as the patch put in attached to my brain and the rest of my cerebellum was sliding down! WHOOPS! So we added a new patch harvested from my head (one less scar) and titanium mesh to prop the brain back up. I believe either in surgery 2 or 3 (it's getting fuzzy) they also cauterised my cerebellar tonsils.
This is all interesting, but why am I talking about this right now? Because it is Chiari Awareness Month in September. As I have been doing for over a decade I am sharing my story to raise awareness. Since I was diagnosed I started a support group which is now the biggest one in Australia with over 1,800 members! Check out our public page where we share information.
I also have spent that time creating a website with resources for patients and those needing information.
So September is a big month for me (and is also awareness month for two of my other conditions). However, Chiari will always have a special place in my heart and I will continue to fight the good fight getting people aware. This isn't rare 1 in 1000 people have it! It's just poorly recognised or understood. So there are many more people out there being told their issues are in their head, though with chiari our issues are falling out of out head!
Help financially - https://www.gofundme.com/keep-kirstins-head-on
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