Cerebellar Tonsillar Ectopia: Not a Carnival Ride.
After a thirty-year-long excruciating and exhausting process, and a ridiculous misdiagnosis that cost me my job and put me into this 5+ month waiting period, I finally know what has been causing me an unbearable amount of pain and severe fatigue. Cerebellar Tonsillar Ectopia. Wheeeeeee!!!!! It sounds like a Disneyland ride, but it's not. It's a roller coaster of sorts, for sure - it makes me throw up, leaves me blind and dizzy, and renders me unable to function for literally days and weeks at a time - but it’s no thrill ride. My local friends know that when they see me out in town, (and it's a small town), I must be having a really good day.
Let me explain what the hell “Ectopia” is. There’s this hole in the bottom of your skull. This is it:
Great Big Important Hole.
That’s the foramen magnum. Latin for great hole. Great fucking hole indeed, my brain’s trying to escape my head through there. Literally. The only thing that’s supposed to pass through this hole is the brain stem. The cerebellum chills out right above this awesome hole and cerebrospinal fluid is supposed to flow around there when your heart beats and especially while you sleep. That CFS is supposed to go in there and clear out toxins in the brain, like heavy metals and whatnot. Unless your cerebellum’s tonsils decide to block that passage and create a stupid amount of pressure and pain.
Let me explain. According to https://www.ncbi.nlm.nih.gov/pubmed/15062536, “Tonsillar ectopia, encompassing slight descent of the cerebellar tonsils and Chiari I malformations, are disorders observed routinely in older children and adults and are believed to be an acquired form of the Chiari malformations. This entity is different from the other Chiari malformations in that hydrocephalus plays no role in its evolution. More likely it is a disorder of para-axial mesoderm, characterized by posterior fossa hypoplasia and content overcrowding, and not an embryologic anomaly of neuroectoderm.”
So, basically, in English, my brain is too big for my skull. (Like we didn’t already know this. Hah.) I’ve developed Chiari 1. I wasn’t born with it, it just….happens.
Anyway, now that I know this, I can actually recall how it started. When I was young, my sisters could do their hair for hours and I just couldn’t keep my arms above my head. I was constantly exhausted and had terrible coordination at sports. When I was seven I started throwing up from migraines. I’ve had them since, but when they started getting really bad 12 years ago, coupled with fibromyalgia and chronic fatigue syndrome (read: symptoms from Chiari), I had three diagnoses and 40 trigger point injections a week. Some of you held my hand through that three-year-shit and enjoyed bruises and broken fingers afterward. Thank you for that. Didn’t do shit, but we tried.
Fast forward a decade, and after a lot of life changes and new MRIs, suddenly we can see that my brain is hanging out below the foramen magnum like it thinks the tooth fairy or Santa Claus is gonna show up and it might get the first glimpse.
Great news, right?? Cause now we know what it is and can maybe address it?
Well, easier said than done. Cause the brain surgeon has her front desk gal call and tell me it’s actually a tumor but she can’t answer any questions and I’ll have to ask the doctor myself when I see her in over two months. So here I am with Autism and cyclical thinking and now panicking over a tumor and I’m already having seizures at work and giving customers Word Salad (no joke, see their Google review right here that actually alerted me to the fact that my situation was much worse than I thought it was - wait for it - on Christmas. Awesome. Ugh Review Here )
So that happened. My hours got cut more and more as the management was concerned. So I used that time and helped a very dear friend of mine heal from an inoperable glioma brain tumor with a very specific protocol, and the surgeons suddenly were able to remove his reduced tumor (9 to 7 cm!!) and save his life. Then my dad passed away, and when I returned from burying him, my glorious job informed me to go on disability.
Which I did.
At which point I called the neurosurgeon’s office to demand some answers and explanations and finally after pulling teeth they admitted they hadn’t meant it was a tumor. It was cerebellar tonsillar ectopia, and they were going to treat it as a mild Chiari 1 malformation. Which meant I would need to do some nerve study tests involving needles and electricity (EMG), and then block some occipital nerves and see if it sticks (no pun intended), and for how long, and then after we exhaust those options, we may proceed to skull decompression, which I actually prefer over blocking some nerves and going on with my life pretending the pain isn’t happening. Aren’t those nerves there for a reason?
So, disability still stands. But.
It only covers a small portion of my rent, which is pretty reasonable for where I live.
But that’s clearly not enough.
I realized that since my brain seems either too large or is swelling, despite what the research says, I’d benefit from a keto diet, and went promptly on the same anti-inflammatory protocol that my friend had been on. I was right. I went on the protocol and my painful seizures lessened to either more mild or fewer per day. The migraines became more bearable.
But this solution isn’t cheap. It requires:
500mg Boswellia Extract 3x daily
1 tsp Black Seed Oil 3x daily
Sublingual 30c Arnica 3x daily
Topical Arnica as needed
1 gram RSO daily, to be increased despite how tired it makes me
10+ apricot seeds daily
MCT oil
CBD oil by the barrel it seems
A ridiculous amount of organic fresh fruit and veggies for my morning smoothies, which are the only carb sources I can have at the moment cause they are not impacting my seizures somehow
A silly amount of superfoods like greens and algaes and mushrooms like reishi and lion's mane
Regular massage and craniosacral therapy, which helps move the CFS so that my brain can clear toxins
Gas to and from Redding three-ish times a week
Car maintenance, cause Humphrey doesn’t like all this running around anymore. (He’s a 1983 Volvo 245 with an exhaust leak that is no longer fixable, a transmission issue no one will work on, and seal issues. Womp womp.)
Oh yeah. Rent.
Other things I can’t even remember at the moment, like phone bills and such, cause my brain is escaping my head. Did I mention that??
Meanwhile, to try to make ends meet, like pay electric and gas to get to these appointments and stuff, I started doing Senior Photos for the local kids so they can be seen in their natural element around the mountain where I live.
The school year ended. And running around became exhausting quickly with the migraines. This is something I'd love to be doing more of, though.
I also started attuning Reiki students for free, cause this is still something I have energy for sometimes and it is my deepest life work. I prefer to attune people who are broke and desperately want to manifest their gifts but don’t have the means, but I will attune any student who is willing. My life goal is to create a great many Reiki Masters for free, on a sliding scale, or for equal trade. This would have began this year by going to Jamaica with the non-profit I’m affiliated with and attuning the local children and women to become Reiki masters. The young ones could heal the earth and themselves and each other, and the older ones and adults could create Reiki practices for themselves that will be sustainable. This would be a blessing in a community where sustainability is a scarce commodity unless you know what your talent is and use it. The idea is to create more leaders, not followers. This is still my aim, but not the purpose of this fundraiser. My personal healing must come first.
My other joys are music, which I produce on my Korg when I have the inspiration;
My soundcloud presence here:
Photography and nude art modeling, which are my greatest outlets for the immense store of emotions I encounter through this journey, especially as an Autistic person;
Dancing (same);
Redwoods, forests, and the ocean;
Painting, collecting moss and making terrariums, singing, drumming, guitar and uke but usually late in summer, cat herding, my dergish Athena, camping, the river, the lake, more moss, and more recently, writing hip-hop rap lyrics.
So that’s my story. Won't you join me on my journey of healing? I'd be truly and forever grateful.
TL;DR: My brain’s trying to escape my head and I can’t afford to heal properly without your help. Please help? Thank you immensely for even taking the time to read this novel, and may you have a blessed existence. <3
<3 Kelly <3
siSTAR support! Donate $444 and my dear friend Sandra will gift you a full year of her incredibly powerful Ascension Path class!
Here is the class ~ https://sandrawalter.mykajabi.com/ascensionpath
