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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6 Comments »

  1. MICHAEL TILLER Said:

    LIPSTICK YOUR BLOG IS GREAT. JUST TO GIVE YOU A LIL BACKGROUND ABOUT ME. I WAS DIAGNOSED IN JUNE OF 2006 WITH ACM TYPE II. I WAS IN THE ER WHEN THEY DIAGNOSED ME WITH IT AND THEY BROUGHT IN A NEUROSURGEON. HE GAVE ME MEDS TO START OFF WITH AND THEN AFTER THOSE DIDNT WORK HE TOLD ME I WAS GONNA HAVE TO HAVE SURGERY. SO I WENT THROUGH THE DECOMPRESSION SURGERY IN AUGUST OF 2006. IT WAS A LONG HARD RECOVERY FOR ME. ALL THE SYMPTOMS SEEMED TO GO AWAY AND SO WHEN I RECOVERED AND WAS CLEARED TO GO BACK TO WORK I DID. THEN IN FEB OF 2007 I STARTED HAVING PAIN IN THE NECK AND SHOULDER AREA. SO I WENT BACK TO THE NEUROSURGEON AND HE TOLD ME I WAS GOING TO HAVE TO HAVE A CERVICAL LAMENECTOMY.. SO I WENT THROUGH WITH THAT SURGERY AND AGAIN WENT THROUGH A HARD TOUGH RECOVERY WHICH WAS WORSE THAN THE DECOMPRESSION SURGERY RECOVERY. NOW MIND YOU WHILE I WAS STILL IN THE HOSPITAL AFTER THE 2ND SURGERY THE SURGEON TOLD MY MOM THAT THIS WOULD BE ALL THAT I NEEDED AND I WOULD BE FINE. SO AFTER CLEARED AGAIN TO GO BACK TO WORK I DID. I WAS DOING GOOD AT WORK THE FIRST COUPLE WEEKS OR SO AND THEN I STARTED HAVIN THE PAINS ONCE MORE. I WENT BACK TO THE SURGEON AND HE TELLS ME OH ITS TYPICAL AND YOU NEED TO GO TO A PAIN MANAGEMENT DOCTOR AND I DID. BUT SHE COULDNT HELP ME AT ALL. SO WITH ALL THE PAIN MY MOM TOLD ME TO QUIT WORK AND SHE WOULD TRY AND HELP ME AS BEST SHE COULD. SO NOW I HAVE BEEN TO NUMEROUS DOCTORS AND HAVE HAD A COUPLE OF MRI’S DONE AND THEY SAY EVERYTHING LOOKS NORMAL FROM THE SURGERIES. BUT I THINK OTHERWISE. I AM HAVING THE HEADACHES IN THE BACK OF MY HEAD AGAIN. IM HAVING THE SHOULDER AND NECK PAIN. AND NOW MY BACK IS IN EXCRUTIATING PAIN. MY MOM CALLS THE SURGEON BACK YESTERDAY AND TRIES TO MAKE AN APPOINTMENT. SO THEY HAD TO CALL BACK. I HEAR FROM THE SURGEONS NURSE AND TELL HER WHATS GOIN ON. SHE TELLS ME THAT I NEED TO HAVE AN CSPINE MRI DONE AND I HAVE TO DO THAT THROUGH MY PRIMARY DOCTOR. BUT WITH ME NOT WORKIN NOW I DONT HAVE A PRIMARY DOCTOR AND I DONT KNOW WHERE TO TURN NOW. I AM GOING TO A CLINIC IN 2 WEEKS THAT CHARGES YOU BASED ON YOUR INCOME. BUT I HAVE A FEELING WHEREEVER I TURN TO IM GONNA GET THE RUNAROUND AND STILL BE IN PAIN. I HAVE THE GUT FEELING IF THEY DO AN MRI THEY ARE GONNA TELL ME OH EVERYTHING LOOKS FINE AND NOTHING WILL HAPPEN. I JUST DONT KNOW WHERE TO TURN. I HAVE BEEN READING A LOT OF BLOGS SUCH AS YOURS WITH PROBLEMS OF THE DOCTORS SAYING EVERYTHING LOOKS FINE AND PEOPLE WITH ACM ARE NOT BEING TREATED CORRECTLY. I JUST DONT KNOW WHERE TO TURN AND WHERE I CAN GO TO GET SOME RELIEF. SORRY TO VENT LIKE THIS. BUT YOUR BLOG INSPIRED ME AND HOPEFULLY IN THE FUTURE SOMETHING WILL BE DONE FOR THIS ILLNESS. THANKS FOR LETTIN ME VENT.
    MICHAEL

  2. Becky Said:

    From one Chiari sister to another I have to say is this is an AWESOME post! I couldn’t have said it any better!

    Take care,

    Becky

  3. lipstick, girl you rock! i have been venting over and over to my husband almost the exact words. what the hell are these doctors becoing doctors for, when clearly the can give a crap. i though helping the patient is the point. i have a 2mm tonsillar ectopia as an incidental finding. for 6 yrs, this has been sitting there on my reports and i have just found out. i gathered reports to bring to a neurologist and finally saw the findings. i asked this doc what this is and the asshole told me he never heard of this. so he wanted his own mri done and we would talk on my next visit. i went home and googled tonsillar ectopia so you can imagine how floored i was to see all my symptoms. on my next visit i brought printouts from the internet. well he was pissed and became so arrogant. i challenged him and he did not like it. he brought my husband and i look at the mri film and showded us the crowding and descend. he said it is not normal but is not causing my problems. there is also something with two ventricles that look like they have white caps on the end. whatever that means. he admitted he thought it was chiari on my first visit but said it wasn’t the problem because it was only 2mm. what a contradiction to say something is not normal but can’t be a problem. he wants to do a spinal tap and i said hell no! so i have an appt. with a neurosurgeon on march 9th and i pray he is not going to dissmiss like so many others. sorry so long!

    xxx spring

  4. Ginette Godin Said:

    You should look up Chiari Malformation Type 1! It really explains how many people with a chiari and 0mm of herniation still suffer many symptoms! It talks about how doctors and neuros need to realize these new findings! Very Interesting!

  5. Alicia Said:

    You are hilarious! I totally love and feel your comments and frustration. I am a fellow chiarian. Even with an MRI diagnosing CM1 with a herniation of 6mm and a trip to the hospital via ambulance from my Family physician’s office. A 5 day hospital stay brought the diagnosis if CM1 and an unusually small spinal canal – once I had my follow-up Appt with a neurosurgeon I was told since I had so many symptoms it was all in my “head” and I needed to see a psychiatrist. What!!!! Yep buddy it is in my head and neck but not something a psychiatrist could fix. Hello!!! Isn’t this your specialty ??? I’ve found few neurologist and neurosurgeons are educated / familiar with this Chiari. I agree with you on everything you said above-I’ve experienced it first hand. Prayers for you my friend.

  6. I’ve read a few good stuff here. Definitely value bookmarking for revisiting.
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