SEIZURES
My seizures were well controlled on Phenobarbital, except that I was on such a high dosage. I went a year and some like that and hardly recollect much during that time. I remember how difficult it was to do anything and how unhappy I was but not too many details. It was definitely like living in a cloud.
Eventually the dosage of Phenobarbital was reduced by one doctor who thought it was too much, especially if I wasn’t having seizures. So I started having them again and every year they became worse until I was shaking and blacking out. The type of seizure I had for 18 years was called a simple partial seizure. I could still do everything during them including drive but I had to concentrate really hard. They became so frequent I was getting no rest at night and each one I had during the day wiped me out more and more as the day went on. I worked, I went to school, I had a home and a family. Everywhere I went, all the things I did, I was labled lazy by teachers, bosses, and wives - never allowing myself the needed time to recover post ictal. Over the years as insurances doctors changed I had difficulty convincing new doctors that I had seizures because what I described to them didn’t sound like a seizure to them. “How do you know you have seizures”, they would ask.
In 2005 I had a Vegas Nerve Stimulator implanted. It is basically like a pace-maker implanted in your chest and attached to the vegas nerve in the left side of your neck. It was supposed to stop seizures by stimulating my brain every 1.6 minutes. It helped a ton with my night seizures. I went from 15-30 every night to around 6 but during the day I continued with 3 to 5 every day, never allowing myself to take a break or recover from them, just doing the best I could. I slept in my car after work before driving home, slept in a lot of strange places, and had a lot of terrible experiences. By 2006 the seizures had become too much. Every time I saw my neurologist he either increased the dosages of my current anti-seizure medications or added a new one.
I was on four medications that didn’t work in 2008 when I asked him what other options I had.
He told me about epilepsy surgery and referred me to the University of Utah hospitals to see if I was a candidate for the surgery.
Another brain surgery I thought. Anything but brain surgery I thought - but It’s worth a try, something has to be done because the medications aren’t working! I felt justified when I began the testing at the University of Utah and I explained my seizures and they agreed absolutely that it was seizures. I went through a battery of tests for nearly a year before having the epilepsy surgery. Everything from sleep studies, video EEG, having half my brain put to sleep and memory testing. And an ECoG (Electrocorticography) was the final test – an array of electrodes was to be placed on the surface my exposed brain to record the seizures. This would pinpoint the origin so it could be removed.
After the grid was placed I began having an entirely different seizure altogether. For seven days I tried everything I could to cause me to have my typical seizurea so they would get a good recording. I think I may have had one or two or my regular seizures and they were a relief from the ones the test was causing. Then one day as I was with my friends and family I began to have one of these seizures, immediately with these I would begin choking on my saliva, my jaw would open and close on its own and I couldn’t speak or breathe very easily. Eventually I must have passed out. I knew it was bad when several minutes passed and it was still going on. I thought I was going to die. I told myself the next time I was conscious I would be in a spirit world and wondered what memories of life I would have. Strangely I wasn’t afraid.
To stop the seizure I had to be taken into surgery and have the grids of electrodes removed. Gratefully, the epilepsy surgery was performed at the same time, the majority of the right temporal lobe of my brain was removed. When I came to I was strapped to a bed still intubated. I had to sit that way breathing my saliva for at least thirty minutes before someone came and took the stick out of my throat. I learned I had chewed my tongue to bits and my throat was destroyed when between convulsions the anesthesiologist rammed the tube down my throat.
Surgery in July, then comes October and suddenly I wake up with my head the size of the Goodyear Blimp. They never could tell me what the infection was or how I may have gotten it but back to the OR and another craniotomy. More staples so what? The bone flap from the surgery was so infected they had to toss it. I had to go without skull covering the right side of my brain for three months while we waited to make sure the infection was gone. They gave me a helmet to wear when I got out of my chair. I slept in a chair because I was worried that if I slept in my bed I might roll on the side where I had nothing protecting my brain but scalp and I couldn't roll the other way because of the picc line in my bicep for the antibiotic therapy three times a day. Because Medicare wouldn't pay for the home nurse who came once a week to clean the picc and take blood I wasn't allowed to leave the house. I had to be 'homebound' for that coverage. We termed the helmet 'the brain bucket' and wrote that on the back with vinyl lettering. Finally Dec. 31st I had a prosthetic skull implanted and I have to say it's much stronger than my skull was before with the bone flap although it is often achy.
I now experience some strangeness when exhausted – something diagnosed as Aphasia which is described as an acquired language disorder in which there is an impairment of any language modality. This may include difficulty in producing or comprehending spoken or written language. I don’t know how to explain it better than watching a movie I know so well I can quote along with it and watch and hear entirely different “words” coming out of their mouths. I say words but in reality it’s mumbo jumbo. Apparently when I speak to someone while experiencing this I use the F-word a lot. I wish it were any other word than that because that is terrible. I don’t have this happen often but it’s insane when it does, I certainly could not function that way all the time.
I just want to say - I know many do not share my point of view - that I am grateful for my experiences. I'm not glad that I had brain cancer and terrible seizures for nearly twenty years or the car accident, windshield breaking, public pant crapping and more - to be certain. It's more that the life experiences I had because of those trials have given me experience in a way nothing else could. Life, afterall, is about gaining experience... experiencing things. I hope to have a lot more time left in this life and to experience much much more.
Since July 2009 I have not experienced a seizure.
Model Gallery
Click Below
Images
Click an image below then click to close
