drewsant's Blog

I guess I'll tell a little about myself. The celiac disease is just the tip of the ice berg for me. And I seem to be doing pretty well with it, so I'll have a boring blog if I just talk about my Celiac disease. So I'm going to tell you about myself. I'm going to post this in several installments, otherwise I'll get carpal tunnel typing it! I was born November 5, 1968, with Spina bifida- a common neurological birth defect. I have the most severe form of it, and as it is, it could be a lot worse. There are 3 forms, and I have Myelomeningeocele. There is also Occulta, where people don't even know they have it, and Meningeocele, kinda in between the severity I have and the mildest form. Myelomeningeocele basically is where the base of the spine doesn't form completely, leaving a hole where the skin doesn't cover the spine, and the vertebrae are "cleft" or split, and not fused. This leaves an opening through which a sac containing spinal fluid and the spinal cord itself, protrudes. It can happen anywhere along the spine, from the neck down. Luckily mine happened at the base of the spine, right above the tail bone, so the paralysis wasn't as bad. I am paralyzed partially from the knees down, and totally from the ankles down. I have spotty feeling in my legs from the waist down. My legs are fairly deformed, and small, compared to the top half of my body. I like to say I'm a 5'10" person on top, but a 4'9" person on the bottom. Very disproportionate, due to nerves not completely growing from the waist down, so my legs didn't grow like my torso did. Anyway, my mom had no idea I was going to be born with this (in 1968, no ultrasound!--probably also why my parents called me "Jeff" while I was in the womb ) My dad was stationed in Korea during the Tet Offensive when I was born. Immediately after I was born, the doctor got ahold of the Red Cross, and told them to find my dad and get him home. He had no idea what was wrong, or even if I was a boy or a girl. It was a 54 hour trip back home, via military cargo planes, commercial flights, and "puddle jumpers". My Grandpa met him at the airport, took him to the hospital, just in time to sign the papers for them to take me by ambulance to the University Of Iowa hospitals, where I stayed for 6 months. Since it was winter, and my mom and dad both had full-time jobs, they couldn't make the 5 hour drive very often to come see me. But finally, after having my spine closed up, and some surgeries on my hips and ankles, and a shunt put in to drain fluid from my brain, I came home on Easter weekend. I lived in casts up to my hips until I walked at 3 years old. I got around on a mechanics creeper. (Still remember this vividly!)I had a floor-eye view of the world until I was 3! I got very adept at crawling around dragging my casted legs behind me. Still have my first cast that I kicked off when I was about 6-7 months old. I had been born also with club feet, and no hip sockets, so the casting and surgeries up until I was 3 were to stabilize my legs enough to let me walk. I have pins in my hips, screws and pins in my feet and ankles. I have more scars than Frankenstein! Another thing that is sort of a "side-effect" of the Spina Bifida is that I developed Hydrocephalus-- water on the brain, right after they closed my spine up. The doctors told my parents that I very well could be blind, deaf, totally paralyzed, and mentally disabled and basically would live like a vegetable. Obviously they were wrong. I had a shunt put in, that drew the water off the brain and down into my abdominal cavity where it was just absorbed back into my body. I saw an MRI a few years back of my brain, when I started having these weird, violent neck spasms that make my head jerk uncontrollably. It was amazing to see it--I could see the shadow of where the water had been on the top of the brain, where it had displaced it and caused permanent physical damage (mental damage is still debatable I guess!LOL). I also saw where they had put the shunt- it was just a small tube inserted up between the 2 lobes of the brain, right in the middle. Another thing they found with this MRI, (other than I wasn't dying of a brain tumor), is that I also had Arnold Chiari malformation, which is where the cerebellar tonsils at the base of the brain, in the back, elongate, and slide down into the spinal column, and push on the spinal column. This is what the Neurologist thinks is causing the neck spasms I have. It can be a very serious thing, but mine is pretty mild. It just causes me to get instant headaches if I strain or put my head back too long, and my gag reflex is super-sensitive. Well, I don't want to overwhelm everyone with a medical dictionary so this is the end of part 1!