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Have Faith. You Know You Best

Posted Apr 09 2009 7:17pm
So I had an appointment with my neurosurgeon last Friday. His PA had been convinced that Chiari was to blame for my long list of symptoms and recognized that I needed immediate relief. So, after listening compassionately and making note of any new symptoms and increased severity of the others, he stood up and said in a tone only slightly less then urgent, "Well, then, let me go get my boss." His boss, my NS, came in and after a brief handshake, turned his back on me and stared at my MRI on the wall. After all of 30 seconds he shook his head and said, and I quote, "Naah, that's barely a Chiari, there's just no way that's causin' all of your symptoms. I mean to draw a line, that's barely over it. So the good news is, I'm not recommending you for surgery." My mother and I sat there stunned. The room was silent. My mother and the PA were white as ghosts, flabbergasted, just looking, waiting for me to react. I don't know how to explain what I was feeling. I was shocked of course but I was also embarrassed as I sat on that table beginning again to doubt my sanity as I felt the validation that I had been craving for so many years be snatched away within mere seconds by a man that had known me for less than minutes. However, I KNEW what I felt. I KNEW I was sane. Finally the embarrassment gave way to pure indignation. So, after what felt like hours, but was really only seconds, I stared my surgeon straight in the eyes and said "I have studied the work of Dr. Bolognese and Dr. Milhorat of the Chiari Institute in New York. I have read hundreds of blogs written by suffering Chiarians and do you know what they all said to me? They told me that if my surgeon looked at the size of the herniation and told me that it couldn't be causing my symptoms... to get up and leave." The surgeon looked shocked to say the least. He said condescendingly "Well, I'm just a lowly neurosurgeon. I just operate. Neurologists are the diagnosticians. As I said, I'm just a lowly neurosurgeon." He instructed the PA to get a number for me and left the room. The PA looked mortified, and without making eye contact said, "I'm really sorry. Unfortunately it's just not my call." So that's how that ended. I was devastated at first but if there is one thing that I have learned from this whole thing it's this; WE HAVE TO BE OUR OWN ADVOCATES. DON'T LET SOME DOCTOR WITH LITTLE TO NO EDUCATION ABOUT CHIARI TAKE AWAY YOUR FAITH IN YOURSELF. KNOW THAT YOU ARE NOT ALONE. KNOW THAT IT IS A LONG ROAD BUT IF WE KEEP SEARCHING WE'LL FIND THE HELP WE NEED AND THE HELP WE ALL DESERVE. STAY STRONG! (I'll try)
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