~*~ LINDSEY'S STORY~*~

       At the age of 14 I started having severe headaches, along with black outs, ringing in my ears, eye twitches, and fainting.

    

After a visit to a Neurologist, and an MRI, I was diagnosed with Chiari 1 Malformation. My Chiari was 4mm.I dealt with my symptoms throughout the years, until age 21.

     In 2007, when my son was two years old, I fell in my yard while carrying him to the car. To prevent from falling on him and hurting him, I maneuvered my body and landed "flat on my back". It knocked me out cold for several minutes.   

     Thankfully I live behind my parents and it just so happened that my mother was doing the dishes and looked out the window. What she saw was me laying in the middle of the yard, my purse and all it's belongings scattered everywhere, and my toddler, Logahn, crying and trying to wake his mommy up. 

     When I regained consciousness, I cried and was sore, but after a half hour or so, I was okay. I was just shaken up. But later that night I got a headache that wouldn't go away and passed out while going into the bedroom to wake my husband.

     I was taken to the emergency room. I had another MRI performed and found that my Chiari was 8.5 mm. Which is EXTREMELY large for a Chiari. I went to my neurologist the next day and then was referred to a neurosurgeon.

     I had my first surgery, a decompression, on November 6, 2007. My first surgery consisted of the lamina, or back portion, of my C1 and C2 spine removed. A large portion of the occipital bone of my skull was removed. And since my dura matter had to be opened to perform the surgery I received a synthetic patch, or graft, on my dura called a Dura Seal patch. 

     I was healing well for the next 4 weeks. Then I started having extreme vertigo by standing, and debilitating headaches. I went back to my neurosurgeon, had yet another MRI done and discovered I had developed a Syrinx, a cyst on the spinal cord or in the spinal canal around the brain stem, the size of a baseball in the back of my head and went in for a second surgery, a  repair and removal, on December 26, 2007.

     My third and so far final surgery was on January 11, 2008. It was another repair on my dura. My dura had not healed well and was leaking out cerebral fluid, causing my flow to be abnormal, which caused severe headaches. 

     Since my head had been opened up three times in less than two months, I was given a significant amount of steroids in the Neuro ICU to keep my brain from swelling, but was not gradually weaned from the drugs. Which was carelessness on my doctors behalf. So on my second day home, I was screaming in severe pain from a steroid rebound. A steroid rebound causes your body to have Cushings Syndrome symptoms, extreme swelling and extreme joint pain. The nurse at my doctors office told my mother over the phone to increase my Percocet, which did not help. After four hours of screaming and crying, 25 mg of Percocet, and about 15 mg of Valium, I finally was so drugged I went to sleep on the recliner. My husband went to nap in the bedroom, and my parents took my son to get a haircut and out to eat. Two hours later I woke up. Something was telling me "get up". "Get someone to take you to the ER." "Get up now or you're going to die!" "WAKE UP AND GET HELP!" So I started freaking out and told my husband, "Get up now and take me to the ER or I'm going to die!" So we went.

     I was rushed to the ER yet again, and after a CT scan, it was found that because I wasn't taken off steroids slowly, my body had a severe reaction causing my brain to swell massively and shift to the left side. Because of the severeness, the ER doctor could not find a hospital that would take me as a patient, I was not stable, I was very sick from the cause of neglect from another doctor, which was what they considered to be a liability. And on top of all of that it was snowing heavily.
     I was not allowed any more pain medicine because it would cause my brain to swell more. I remembering going in and out of consciousness. Seeing my mom holding my son crying, my husband crying, my dad running in and out of my room on the phone crying, my grandmother calling everyone she knew telling them to pray. What really got to me was my aunt, Wanda. She worked in the ER and was at work that night. My aunt never cries. She's always calm, collected, and doesn't make a scene. As she was pushing steroids into my IV, she started crying and it dawned on me, this is it. And I asked, "Wanda, I'm going to die aren't I?" And I passed back out.

     Finally after hours of praying, crying, screaming, and steroids along with the intellect and treatment of the ER doctor, my brain started to decrease in swelling. I stayed a week in the hospital and gained about 25 pounds from steroids, and finally started in on yet another healing process. 

     Now I'm what Chiari survivors call a "zipper head". I'm not quite well, and will never be completely healthy. I live my life in a considerable amount of pain and clumsiness. But it's my life, and I live it one day at a time and to the fullest of my ability.


Thanks for reading,
~Lindsey