Tuesday, March 11, 2008

My Chiari Journey

My chiari journey has been long and painful. I started getting sick in junior high, with stomach aches, fatigue, and headaches. During high school, the headaches worsened, and I developed worsening fatigue and exercise intolerance. No one knew what was wrong with me. I got tested for many things. They only found that I had mono one year, that never seemed to go away. By my senior year of high school, I was home-schooled and so sick all the time. It was a miserable existence. I was finally diagnosed with a chiari malformation in the spring of that year. I had a decompression surgery at Children's Memorial Hospital that summer, July 2002. The surgery went very well, as did my initial recovery. It was the first relief I'd felt from my headache and nausea for as long as I could remember. But when I went to college that fall, I started getting worse, and kept getting worse. I developed POTS, which caused a dizzying array of symptoms. I had blackouts, low blood pressure spells with decreased consciousness, chest pain, extreme fatigue, cold sweats, sleep difficulties, and more. Finally, I went to the chiari institute, and they determined that I needed further surgery. I had a cranio-cervical fusion in December of 2003. The recovery was so difficult that I was bed-bound for over a year. But my symptoms have stuck around. I now have been diagnosed with tethered cord syndome, and am considering multiple more operations.

Living with chiari has been a living hell. No one understands the kind of pain I am in every moment of my life. I work very, very part time, and even then I often have to call in sick. The constant headache is so draining, I just don't know how to handle it. Due to my illness, I deal with a lot of depression and anxiety issues. I've been suicidal multiple times. Anything to escape the horrendous pain. I just never know what symptom to expect next. Constant headache, back and neck pain, pain anywhere in my body, dizziness, nausea, extreme fatigue, fainting spells, heart arrhythmias, choking on my food...it never ends. And no one seems to understand or know how to help my symptoms.