Truly Nutty Diagnosis
July 2006 Article - Julie Carter
"Today's mighty oak is just yesterday's NUT that held it's ground..." -Anonymous
When our Chiari friend Heather sent us that quote from Idaho, it really made me smile. Over the years, I have been accused, or should I say, diagnosed, as a "nut," by a couple of physicians who were ignorant of the actual physical damage that a Chiari malformation can cause. That label was very injurious to me personally, and I took it personally, for awhile. Eventually, I understood that the only reason for such a severely incorrect diagnosis was a lack of knowledge and experience regarding Chiari patients-by those doctors.
I believe that ignorance caused the apathy that contributed to these misdiagnoses being entered into my medical records, which, in turn, caused no small amount of misery in my life when attempting to access quality health care from then on. I won't lie to you, I was very hurt and became truly bitter bout those events in my life, but when it began to happen to my daughter too, I realized that something had to be done to protect our right to correct medical care in the future; but what?
For those particular doctors, their ignorance wasn't complete bliss... I turned the instigator over to the State Medical Review Board, with a formal complaint of emotional harm, damage to my reputation, and incorrect medical records. I am unhappy to report that all they did was slap his hand a bit, but, he did find himself under the scrutiny of the medical review board; perhaps at the very least, he will think twice before he makes such a cruel misdiagnosis on his next Chiari patient.
I went to great lengths to have my correct diagnosis added to my medical records, and yet, her I am, 4 years later, still being turned away from local doctors; either because of my Chiari diagnosis, or my "nut" diagnosis; perhaps one day those docs will have the courage to explain their actions and attributes to me. I don't think I should hold my breathe, however.
Which brings me to what seems really important in this situation: Getting our local physicians and nurses educated regarding Chiari, Syringomyelia and the host of associated anomalies we are living with daily. How can this be accomplished? From what I understand, every physician is required to gain "x" number of Continuing Medical Education Credit's per year. Where can they get these credits and/or training? Medical conferences, that's where. But is Chiari being considered and studied in these conferences, and are doctors wanting to learn? That's what I am wondering right about now, how about you?