Archive for Chiari Malformation

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 think a large part of it is egos protecting 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 is 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, it’s all in different shapes and sizes. If one person with a large foramen magnum has a large chiari, he will likely be less symptomatic than someone with a smaller foramen magnum and any degree of tonsillar herniation. Blocked space is bloced space, it matters not the size of what is plugging up the hole. What matters is the blockage and the 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 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. That 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 have patients who present with “temporal lobe seizure like episodes, migraine headaches and vision complaints” who they say 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!? 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 maintaing 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 the 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 that doctors think we 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 doctors appointment for them to take me seriously? 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 by how they look on the outside- It’s childish.

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 brains are on the inside! (or 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 “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 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.

/rant off

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SOME PORK FOR ME

We need Federal Grant money to supplement the generous private donations to ASAP.org.

In 2008, our Congress authorized $17.2 billion in Federal Grant appropriations. It’s time they share the pork with the zipper heads.

Please contact me if you’re willing to help me lobby. I have no experience, but I’m willing to learn.

We need research!!!!!!!!!!!! Last week!

MY 3 BEAUTIFUL CHILDREN

I had 3 children during my pre-diagnosis days.
My youngest (Grace) was 4 when I had my surgery. Upon my diagnosis, I became very concerned about whether Chiari is genetic. I was told that there is only a very small percentage of familial incidence; less than 12%, with a then 50% chance of that gene ever becoming functional. I was told that there was no need to test my children unless they showed very obvious signs of ACM.

They were wrong. I should have had them tested sooner. All 3 of my children have varying degrees of Arnold Chiari Malformation, Syringomyelia, retroflexed odontoid, basilar invagination, Spina Bifida Oocculta and Ehlers Danlos Syndrome.

I will tell each of their stories during the next week.

Too little is understood about the genetics behind these conditions. The 8-12% familial incident rate needs to be looked at more closely. I would bet my titanium cranial plate that this number is hugely underestimated. While I know 8-12% is the actual percentage found among patient populations, I challenge how hard they’re actually looking at their patient’s families. All too often I hear symptomatic patients referred to as having “incidental asymptomatic Chiari” simply because doctors don’t understand the wide array of symptoms associated with Chiari.