Sunday, August 31, 2014

Brain on Fire

This book was an intense read that I didn't want to put down. I just wanted to know what would happen next. In 2009, Susannah (the author) goes through a medical condition that starts with paranoid thoughts,  numbness in her limbs, a bit of manic tendencies, then seizures and all out psychotic breakdown. The doctors run countless tests and cannot figure the cause of her issues until one doctor steps in with a lifesaving diagnosis that nearly saved her life. The total cost of her treatments were over $1 million. Good thing she had insurance at the time. 

From the book...
"By the time I was a patient at NYU, Dr. Dalmau had fine-tuned his approach, designing two tests that could swiftly and accurately diagnose the disease. As soon as he received my samples, he could test the spinal fluid. If he found that I had anti-NMDA-receptor autoimmune encephalitis, it would make me the 217th person worldwide to be diagnosed since 2007. It just begged the question: If it took so long for one of the best hospitals in the world to get to this step, how many other people were going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?"

In May 2014, it was announced that the book is being adapted to a film staring Dakota Fanning as Cahalan with Charlize Theron producing the film. 

This book was a bit of a personal read for me. I was sick back in September of 2001. I had been into urgent care and my regular doctor several times, finding no solution. I had severe pain in my back that was so intense it would take me over forty-five minutes to just get out of my bed. I would be drenched in sweat and tears and shaking by the time I stood up. The pain was so bad, I wanted to die. My final visit to the doctor office ended with me demanding to be sent to the hospital. 

I was in the hospital for over a month. It took nearly two weeks before they knew what was wrong with me. Before the diagnosis, I had multitudes of CATscans, MRI's, X-rays, blood tests and physical therapy sessions. Then from being so still for weeks, the doctors thought they saw a pulmonary embolism in my lung on an X-ray. That is a huge red flag, they rushed me in for an angiogram. I was awake for it all. It was just like the show ER, so intense. 

This was right after 9/11, the only shows available on the hospital TVs were Sesame Street or the news about 9/11. I would lay in the bed looking out the window at the planes flying by wondering when the next one was coming, thinking that I couldn't get up to run from anything. At one point during the whole process I lost it. I was screaming at the doctor, throwing anything I could get my hands on. I was yelling that people with brain tumors go home before me, why can't they figure this out! I am in America not a third world country. That particular doctor dropped me as a patient that day. I got a new doctor the next day.

It all panned out fine. This new doctor ordered a spinal bone biopsy. Think that is scary? Yeah it is. It's terrible. You are awake, laying on your stomach then they run you through the scanner. You come back out, they start drilling into you spine a bit then back into the scanner. This process goes on about forty minutes till they hit the right spot. The area is numbed but you hear the sounds and feel the pressure. 

After all of that the bone biopsy showed nothing. However soon after, I had a blood infection. It was a terrible blood infection with a very high fever. They collected vile after vile of my blood for testing and immediately began running IV antibiotics. It was the weekend, so the tests took longer to come back. Of course, perfect timing as always. 

In the end, I had Spinal Osteomyletis caused by Salmonella in my L5 vertebrae. The bone biopsy has shaken it all lose into my system. It was in the exact spot I had indicated the very first visit at urgent care. The entire staff came in to apologize to me. Many of them had thought the whole thing was in my head, that I had just thrown my back out (at the ripe age of 24). I was placed on a high dose of many painkillers, my blood thinners for the blood clot and a permanent IV was attached to my arm. I was on IV antibiotics for several months. 

The craziest thing about my disease was that I did not have a compromised immune system. I was not very young or old. I did not have a broken bone, diabetes, tuberculosis or sickle cell. I had absolutely none of the risk factors associated with this disease. I didn't even eat meat during this time of my life. So the Salmonella had to of come from dirty vegetables or cross contamination. The particular strain of Salmonella was so strong that it must have just busted through my system and found a home in my spine. 

A year after the whole ordeal, I was pregnant with my first child. Life has a funny way of working out. Luckily, I had insurance just like Susannah. I also had a doctor that went for a crazy idea when no one was listening to me. I am designer, not a writer. I never wrote a compelling story about my month of Ostemyletis. Susannah did, and she did a great job. I am grateful for her passion to bring awareness to a disease that needed to be known. 

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