I have a confession to make. My brain is too big for my head. I do not say this to brag but my brain is bursting out the seams of my skull… literally. I suffer from a condition called Chiari Malformation. This means that while my tiny little fetal skull was forming in my mother’s womb, it formed a tiny little shelf at the back of it – something you probably couldn’t even see with the naked eye. But this shelf is enough to crowd my brain out of my skull and down into my spinal column by about 9mm. And oh what a nuisance 9mm can be.
(I remember meeting a Chiarian at a BBQ and we both laughed that only people like us would have MRI images of our brains on our phones to compare.)
No one really understands why minor Chiari Malformations like mine (it really is barely average compared to some people with 15-20mm+ bulges) can cause so many problems. In fact, one of the truly aggravating experience of a Chiarian’s life (yes I made up that nomenclature on the fly only to find others have thought of it long before me) is that some Neurologists will look you in the eye and say things like, “Chiari doesn’t cause pain. It is just an attendant finding on your MRI.”
I am Jack’s unamused incredulity.
Chiari leads to clusters of painful conditions, the most common of which is persistent daily headaches. These are like migraines but range from feeling like something is lodged just in your throat behind your Adam's apple which is putting pressure on your neck, all the way to a feeling like every last one of your brain cells were fed up with working conditions, got organized, unionized, and all came with double-fisted pickaxes, shovels, and steam rollers in a protest to try and launch a full on pressure assault and escape from your brain at full velocity into the atmosphere. The cliché of “It’s not the heat, it’s the humidity” is roughly parallel to the felling of “it’s not the pain, it’s the pressure that is killing me.” I’m sure I’ll have more posts dedicated to discussing just what joyous wonders come along with having a "new normal" of daily pressure headaches when constipation rolls around from the 5th trial medicine in a 5 month period and you cannot push… I’ll leave it there for now.
Another condition that is often a best-mate to Chiari is known as Fibromyalgia. This bile sounding word is actually a catch all term for a whole host of issues that one of my neurologists once professionally (and with a straight face) defined as, “You have a lot of nerve pain and we have no f*ing clue why.” This means that all day every day, I feel like you feel after you went to the gym for six hours having not slept for 48 hours before. Muscles ache (especially shoulders and neck), with shooting spasms, weird tingling sensations, and a random 10 second prick of pain on my forearm or the outside of my right thigh or really anywhere where a nerve ending is just feeling antsy and left out of the party and wants to make their presence known. Hey, have a martini and an Excedrin on me little between the 2nd and 3rd toe nerve ending that woke me up at 4am last night!
This all started for me one warm California winter morning almost 7 years ago. I woke up early on January something 2010, with a mild headache that just decided to never go away. Maybe it had superglue or something, but it came in uninvited and unannounced through my neck and has opted to never leave - I guess it heard California has very friendly tenants rights and knew I'd have a hard time evicting him. Well gradually over the years of tests and drugs and experimental procedures (have you ever had a 5 inch rubber catheter shoved up your nose to spray your sinuses with Marcaine?) and massages and chiropractors and acupuncturists and every homeopathic witch doctor remedy that people would recommend and I was desperate enough to try, I found myself with little hope that a solution would be found and resigned myself to a life of sleeping on a heating pad and an ice pack at the same time. But more on my depression (another common bedfellow to follow on Chiari’s coat tails from what I hear) for another time.
As this blog rolls I’m sure I will relay more of some of the experiences… incidents really, that I have had living as a Chiarian with a bullet lodged in my skull - a 9mm one.