LIPSTICK

Validation is hard to find when it comes to Chiari- and for the life of me, I'll never understand why, when considering that the most fine-tuned organ in the body is being compromised. One would think that compression of the cerebellar tonsils and brainstem, coupled with adhesions from a lifetime of friction between the two and the restriction of cerebral spinal fluid flow would cause some very serious neurological problems and dysautonomia. Pardon the pun, but this seems a no brainer to me. How, and why, do doctors dismiss this? I believe a large part of it comes from their egos protecting their ignorance. If they dismiss what they do not know or understand, they won't look foolish when having to admit they're unsure. Rather, they pretend to know all about it and feign expertise by confidently proclaiming that they would surely recognize Chiari -and of course, none of us have it.
Such games are dangerous and perpetuate our suffering. Sometimes forever.

If doctors took the time to understand chiari malformations, they would learn that there are a HUGE array of symptoms associated with it, for fairly simple reasons. We are, after all, all built slightly different. While human anatomy is mainly the same, we come in different shapes and sizes. If one person with a large foramen magnum has a large, thin chiari, he will likely be less symptomatic than someone who has a smaller foramen magnum with any degree of tonsillar herniation. Blocked space is blocked space! The size of what is plugging up the hole matters NOT. What matters is that there's blockage and brainstem compression. This is simple stuff, people.

For some reason, it would seem that the majority of physicians (of all specialties) were taught the very basic symptoms of chiari at one time or another (during residencies or in med school). Those signs and symptoms seem to consist of "crushing sub-occipital headaches, nystagmus and dizziness". Most of the time, chiari is not considered even when a patient presents with those maladies- which is sad in and of itself, but what is sadder still is that those symptoms are but a fraction of reality.

I've heard specialists say that they've had patients who present with "temporal lobe seizure like episodes, migraine headaches and vision complaints" whom these docs claim have "incidental, asymptomatic Chiari Malformation". Excuse me??? Am I the only one who sees the stupidity in that? Why woudn't a neurosurgeon attribute those complaints to a symptomatic chiari malformation!? They don't because the patient doesn't have nystagmus or the "classic sub-occiptal headaches"?? Morons.
If a patient has an "asymptomatic chiari", they should be symptom free- maintaining the same happy-homeostasis of "normal" people!!!!!!!!!!!
Good gawwwwd, I hate dismissive, egotistical, arrogant, ignorant doctors!

I watched a patient with "asymptomatic chiari" present with sudden heart palpitations and the inability to walk without falling down. I'm no neurosurgeon but wouldn't you think her BRAINSTEM COMPRESSION may be the culprit?? MAYBE!!??? Nah.. she was a rule-out acute heart attack and sent on her merry way- sideways.

Now, I'm not a chiari freak who attributes every hangnail to ACM. I actually have no use for people like that, but let's be smart. If your BRAIN is hanging out of your SKULL (that happy protective place), something is WRONG. Hello!? It's your BRAIN. Sometimes I'm pretty sure our doctors forget that we don't have a spare one. Your brain is supposed to be INSIDE your skull- that's the point of your skull. There is a HOLE at the base of your skull so that your spinal cord and cerebral spinal fluid can have a nice pathway to your brain. If you plug-up that hole- problems are sure to follow.

Am I nuts? Yes, but that's beside the point. This is very simple stuff. If any other body part or organ was displaced, not a soul would dismiss it. If you walked around with your tongue hanging out of your face since birth, surely someone would say.. "hey, that thing belongs in your mouth" and a doctor would eventually fix it and attribute your social alienation to the obvious. We're talking about our BRAIN, damnit. Give messing with it, the credit it deserves!!

Let's talk about another thing... I look completely normal (or so people tell me). This does my condition no justice. Why is it that I must skip the shower and wear no make-up to my appointments before doctors will believe that I feel like CRAP? Why must I look like shit if my neurological system is fubared? Don't dismiss me anymore because of my lipstick, pal!
Do NOT judge how people feel based on how they look - It's childish, dismissive and unprofessional.

Now let's talk about radiologists..
I have had dozens of MRIS. My children have had dozens of MRIs. As you can see by our films, our Chiaris are hardly subtle (note the part of the brain that NOT IN THE SKULL WHERE IT SHOULD BE). We've all had at least one report say "normal MRI of the brain" and/or "incidental chiari". Oh , really? I bet their radiologist brains are on the inside! (then again, maybe not).

I would like to ask them to define "incidental" for me. If you do not know my symptoms and you've never examined me, who are you to tell me that your findings are incidental? If you found a malignant tumor in my head when my chief complaint was headache, would you call it "incidental"? If you're reading a chest xray to rule out pneumonia and find a massive tumor, do you call that incidental? With each MRI I fill out a questionaire with what my complaints are. Guess what? If I write visual disturbances and headaches and you find a chiari malformation while ruling out MS or a mass... GUESS WHAT? If I don't have a mass or MS, my chiari is no longer "incidental". It's a clinical finding. Say "eureka!!!" and pat yourself on the back.
Attaboy.

When you send your "incidental" reports to PCPs, the PCPs incidentally dismiss the significance...............in spite of their patient's brain falling down! no big whoop, right? Until it's their daughter's/wife's/mother's droopy brain.. I bet *then* that little incidental finding becomes something significant.

If only some insignificant Hollyweirdo would find out they have Chiari.. Maybe *THEN* these silly little incidental findings will finally matter.


/rant off

*edited 9/18*