epilepsy surgery group on yahoo,been there 10 years and a couple hundred members

join us at www. health.groups.yahoo.com/group/EpilepsySurgeryGroup1/ chatroom meetings twice a week on different servers,forums up and tons of support, I was born in Boston, MA and raised in Lynn, MA most of my life. My parents thought they had a normal baby girl. But, much to their surprise, when I was approximately twenty months old, I began staring off into space. My parents made several visits to the doctor, only to be told that I was probably going through a phase. I would not be officially diagnosed with epilepsy until around the age of four or five. I went from Neurologist to Neurologist growing up. I used to call Massachusets a name I thought was quite appropriate..."Quackachusetts". After being molested by one Neurologist I hooked up with another one who told me one time that the medication was not the reason my hands were always shaking continuously and that I should seek psychiatric help. My pharmacist looked up the medication in his medical book and told my mother and I just the opposite...shaking extremities was one of the side effects of this medication. I was very fortunate to have found a kind, elderly doctor in Boston named Dr. Albert England. He commented that with all the medication I was on, he was surprised that I was not comatose or dead. He was kind enough to tell me the truth instead of just pumping me full of more medication just to shut me up like all the other doctors had done for so many years. Instead, he began cutting the medication doses. I was beginning to feel like I had never felt before...alive. I had grown quite attached to Dr. England, he was the only doctor I had who would answer any questions or concerns I had without making me feel like an idiot. I had finally found a great doctor and then he retired. That was my once in a lifetime chance. It was never going to happen again. So I thought. My parents and I moved down to PA in 1991. What a culture shock that was! Moving from the city to the country is not an easy adjustment to make. I didn't think I'd ever meet anyone here in PA. In fact, my parents, two younger brothers and I had a verbal agreement for years that should anything ever happen to my parents, one of my brothers would take me in to live with them. We just never thought that with all the seizures I was having, I would ever be able to live on my own. I always pictured myself living with my parents or one of my brothers, sitting in a rocking chair on the porch, and getting old all by myself. A month after we moved to PA, I met Glen and his two children, Katie and Ryan. I worked part time for Glen doing bookkeeping, cooking for him and his kids, and babysitting every once in a while. When I met Glen, I just knew that this was the man I was going to marry some day. We soon learned that Glen and I liked a lot of the same things, and a romance started blooming. He proposed to me on New Year's Day 1992, around 3:00 in the morning. I had hooked up with a Neurologist here in PA as soon as my parents and I moved down here. Dr. Richard Flynn tried different medication combinations over a two year time span. Glen was nice enough to go with me to my appointments if Mom couldn't. I was still very leary about doctors after the molestation with the doctor in Salem, MA. I didn't trust anyone. Dr. Flynn came right out and told Glen and I that there was nothing more he could do for me, and recommended I see a doctor up in Syracuse, NY. He had heard that they were having some miraculous results up there in NY. That's exactly what I needed was a miracle before my brain completely turned to mush. His secretary called up to Syracuse and made an appointment with a Dr. Andrew Bragdon for me. Glen and I were married October 2, 1993. Although things didn't go as smoothly as I would have liked. Mom had broken her ankle in three places just three or four days before the wedding. She had to have emergency surgery to put a metal plate and some screws in her ankle. Doctors weren't going to let her come home in time for the wedding. She told the doctor if he didn't release her, she'd sign out against medical advice. She was on so many painkillers she doesn't remember one bit of the wedding. So Mom and I had a role reversal that day. I had to go next door and bathe and dress her, make sure Dad was all dressed, and make sure my niece Keri was dressed and ready to be my flower girl. Thank God for my matron of honor and my bridesmaids who made sure everything at the church was perfect and that I was dressed and ready when the limousine arrived. The ceremony went without a glitch, until "the kiss". That's when my brain decided to be difficult and have a seizure! I thought that Glen was the only one who knew I was having a seizure, but he eventually had to tell his ushers and the preacher what was going on. The preacher then proceeded to have the guests and the wedding party step outside the church, so I could sit down and gather my thoughts and recover from the seizure. To beat that, the man who was taking the video tape for us, got it all on tape. I would end up having four or five seizures that day. Of all days! Two months after we were married, Glen drove me up to Syracuse, NY to meet with Dr. Andrew Bragdon who is the head Epileptologist there. Oh, how I dreaded going to another doctor and having to tell my life story all over again. I was so sick of hearing it. I sounded like a broken record. What a shock Glen and I got when we met with Dr. Bragdon and Nurse Practitioner Lorraine Padden. They spent about four hours with us! I began thinking, "this is going to cost us a thousand dollars, I sure as hell hope they take Medicare"! But at that moment I didn't care too much. Dr. Bragdon and Lorraine were just like Dr. England was. They actually listened to everything I said! Lorraine and Dr. Bragdon were two of the most compassionate, caring doctor and nurse I had ever met in my life, besides Dr. England. This had to be too good to be true. Was there really another doctor who really did give a damn about his patients? Lorraine was looking over an MRI or CAT scan I had done previously and noticed my left hippocampus was only half the size of my right one. Of course, that didn't mean anything to me. I didn't even know what a hippocampus was. Dr. Bragdon said I might make a good surgery patient. Dr. Bragdon and Lorraine were so different from any doctor or nurse I had ever met. They were asking me questions that none of the others ever had. They were like the Bobsey Twins, they thought alike, acted alike, finished each other's sentences and thoughts. It was freaky! When Dr. Bragdon told me I might make a good surgery candidate, I was ready to do it right then and there. I was sick of the 24 hour auras. I was sick of being overmedicated and feeling like a walking zucchini half the time. I just wanted to be "normal" like everyone else. I was sick of sticking out in the crowd, being the class freak, and the girl down the road who has "fits". The only three things I've ever wanted out of life were to be happily married to a man who treats me good and doesn't pity me, to have children, and to have my seizures controlled by medication. After all the batteries of tests, Dr. Bragdon consulted with Dr. Mark Smith to see if I would make a good surgery candidate. All I could do now was wait. Come to find out I was an excellent candidate. Now all I had to do was get onto Glen's insurance. Medicare was only going to pay 80% of the one hundred thousand dollars or more. I went through an agonizing eleven months of fighting with Glen's insurance company and calling dozens upon dozens of other companies, only to hear the exact same thing.....I was a "risk" and had a "pre-existing condition". For our first wedding anniversary, Glen and I went down to Hawaii for about nine days. He was sure his insurance was eventually going to pick me up. It was me who had all the doubts. When you've been through what I've been through it's hard to have a positive attitude. Glen and I are like Ying and Yang. He's the optimist, I'm the pessimist. When we got home from Hawaii I was shocked to death to hear form the insurance company and learn that they picked me up on the policy. Come to find out, I was accepted a year ago, the day after we were married. The idiots at the insurance company were just completely clueless. I immediately called Lorraine and told her to set up a surgery appointment for me. I was finally going to be seizure-free or at least have my seizures cut in half. Back then, I would have been thrilled just to cut my seizures in half as I was having hundreds of them every month. December 12, 1994 Glen drove me up to Syracuse one more time. I went through two days of Neuropsychological testing with Dr. Charles Bradshaw who would also be testing me through my surgery. The big day finally came, December 15,1994. The nurse had already been in very early to shave my whole head and give me something to help me relax. Easier said than done. I was a bundle of nerves now. I snuck into the bathroom to have a couple of cigarettes while I was waiting for someone to wheel me down to the O.R. The next thing I knew I was being woke up by Dr. Mark Smith the Neurosurgeon. I thank God to this day that Dr. Smith has a wonderful sense of humor and a steady hand. When I woke up I was screaming and trying to get off of the operating table. I demanded a cigarette, with several nasty adjectives included, and told them I was going home. Dr. Bragdon, Dr. Smith and Lorraine all got a kick out of that. Lorraine got me all calmed down and got me a Nicoderm patch for my arm. Then the "mapping" test began to make sure it was just my left hippocampus and not any other part of my brain having the seizures. I was tested on my name, where I live, what day it is, etc. Dr. Bradshaw had me list off some things he had asked me to remember the day before and read off of some flash cards. Then the surgery began. The whole procedure took approximately fifteen and a half hours. I was in ICU for three days, and when I woke up in ICU I looked like someone who had just fought in a boxing match.....and LOST. I looked like I had just had the living crap beat out of me with two black eyes and my face all swelled up. Day three I was transferred to a semi-private room where I would spend the next five days I beleive. December 22nd, Glen and my brother came to pick me up and take me home. But not before Glen stopped off to get me a surprise. He was over an hour late picking me up because he had gone to the barber shop to have all his hair shaved off! I cried like a baby when I saw what he had done for me, just like he had the doctors and nurses out at the nurse's station doing prior to coming in my room. He told me he had his head shaved so that I wouldn't feel awkward. I told Glen I wanted to make my final rounds and thank all the nurses, the EEG technicians and to see one of my heroes, Dr. Mark Smith before we went home. It was a long recovery with lots of doctor's visits, but every last bit of it was well worth it. I have been completely seizure-free ever since. I owe my life to Dr. Bragdon, Dr. Smith, Lorraine Padden and all the other wonderful, caring and compassionate doctors and nurses at University Hospital in Syracuse, NY. They made me beleive that there truly are doctors out there who care about their patients. I also owe a lifetime of gratitude to my wonderful husband Glen and my parents for putting up with me, without their love and compassion all these years I wouldn't be where I am today. I now counsel over fifteen hundred people all over the world with epilepsy on the computer. I host two epilepsy chat rooms online each and every week, and the members get bigger every year. "Changing the misconceptions society has about epilepsy, by educating one person at a time"....Lisa-Marie Kinsman Epilepsy Chat I on AOL.....every Wednesday night from 7-10PM EST. Email me at: LisaM11463@aol.com and I will be happy to send you the link to the chat room. Epilepsy Surgery Group 1 on Yahoo!.....chat every Saturday night from 7-10PM EST. Email me at: JoanofArc1994@yahoo.com