The Orfice in my Head

sorry so long but its my life story

 

The Orifice in my Head

By: Hannah Marsh

 

What comes to your mind when you hear the word brain surgery? Is it something gross, picturing a man rummaging around in a person’s brain like a homeless man digging through the garbage for the next meal? Or is it something scary? Like the fact that one false move can make the person paralyzed, blind, dead. That was what my parents and I were going through when we heard that I was a candidate for frontal lobe epilepsy brain surgery.

It started when I was four years old. I was a normal child running around falling down, until one day. I fell down and my leg straightened out like a piece of wood, it wouldn’t move. It kind of scared me so I went to my mom and ask her “mommy why did my leg do that thing?” she also freaked out, so we went to the emergency room. They told us that I had a seizure. Well with me being four years old I don’t remember that much of what happened next but I do remember going to neurologist after neurologist, trying to figure out what was going on. In the mean time my leg would “go out” that’s what we called it. This was during the time I was with my biological mother whose name is Debbie.

 Well that went on until I was ten or so. Going to doctors after doctor, trying to figure out what was going on. But then it happened one night at a sleepover. My friend and I was enjoying a cat nap, in my sunroom, it was such a nice day, and I was expecting to go out and play in the cool creek when we woke up, but that never happened. I did wake up but my whole body was convulsing, out of control like a rag doll in a storm. I was so helpless, and very frightened. My friend immediately jumped up and ran to my step-mom (I will refer to her as my mom in the story from now on), her name is Shad. My mom came in and seeing I in the state I was in was as scary to her as it was to my friend and me. She knew from moment one I had epilepsy (even though I was not diagnosed yet) since her eldest brother suffered from the same disability.  My mother called 911 (which have saved my life several times) and they rushed to my house and took me on a trip that I will remember clearly because, it was my first ride in an ambulance. The ride seemed like it took for an eternity. I was rushed to the Carroll County Memorial Hospital and from there they drove me to Kosiar Children Hospital. They ran numerous tests which ones were very noisy and very scary. They, just like the other doctors of other doctors, could not figure out what my problem was. My mother and father were so frustrated but they had no idea about how uncomfortable I felt when I had these “episodes’ as the doctors called them.  The doctors argued with my mom saying I did not have epilepsy. After awhile she soon thought, the seizures were a onetime deal.

Our journey dragged on, like a movie you don’t like, but have to finish. Doctor after doctor and the same result, “We don’t know”. You would figure that after years of college and masters degrees that one of the doctors would know what was going on with me. By this time I was a young lady, a freshly new teenager. But, unlike normal teenagers I couldn’t do most of the stuff my friends could do. Sleep over’s turned into a living nightmare when in the middle I woke up having an “episode”. My father would have to wake up and come get me; all the while he had to work a dangerous job that required a lot of sleep in order to stay safe. Eating chocolate was a no no that would send me into a frenzy that was really hard to stop. The same went on with caffeine; my favorite drink was mountain dew, and I couldn’t drink it. But not once did I think why me, I knew there was a reason and there was a cure for what I had been going through. So our journey drug on through this jungle like safari not having a way out. Or so we thought.

In 2005 we met a doctor by the name of Dr. Puri. He seemed like a very nice doctor and he had some news that made us completely ecstatic. After running numerous tests he diagnosed me. You would think that being diagnosed with something would make you sad but it didn’t it meant we had a break through, a light, a hope. He diagnosed me with epilepsy. Epilepsy is defined as nerve cells in the brain fire electrical impulses at a rate of up to four times higher than normal; this causes a sort of electrical storm in the brain, known as a seizure. We thought since he had a diagnosis, that maybe he had a procedure we could do that would help reduce all the medications I was on (which could probably put a horse in a coma). There was a procedure we could do; they would place Vagus nerve stimulation (VNS) which is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the Vagus nerve. These pulses are supplied by a device something like a pacemaker. They explained the procedure to us and it was scary but they explained to us that it was a very simple procedure that usually brought tremendous outcomes in epilepsy patients. They explained the risk which came with every surgery, and when we met the surgeon, we were at total ease. Well, at least I was, I was completely drugged up, but I knew he was cool. The procedure took less than one hour but when I got out of surgery it felt as if a freight train had hit me right in my chest, and about every minute my voice would change, I sounded like Donald duck. I went home that day and when I started feeling better my mom, dad and I went out into the sunroom to enjoy the storm. We sat and laughed at all the fun times we had together, cried at how much we went through, but mostly laugh when my VNS went off and I sounded like Donald duck. I went almost three months without a seizure. We thought that was the trick that I had been cured but we were wrong. I started having seizures, again, so we went back. This time we didn’t see Dr. Puri instead we seen his assistant. She told us that if we turn the VNS up it may work. We kept turning it up and turning it up until it couldn’t go up anymore. It was up so far that in 2 years the devise which should have lasted five through eight years burnt out and I had to go through the operation again, but just like the first one, it didn’t work, and we kept on going to Dr. Puri, and by this time it seemed as if he had given up on me.

Unlike, most journeys that usually have an ending; this one seemed as if it was never going to end. Since, Dr. Puri had practically gave up on me we went and seen another doctor, his name is, Dr. Arar. A quite unusual man, which at first scared me and was a little weird but after our conversation made me feel like a human being and not a patient. He, like all the other doctors ran test, I had to go through all the loud machines and cold tables again, but I have been through it time and time again, so why would once more hurt? When, he got the results back he took us back into the room sat us down and told us about this place in Nashville, Tennessee it was called Vanderbilt Children’s Hospital. He highly recommended that we go there, that they were the best doctors around. After, many letters, and recommendations, three years later we received a letter that stated when our appointment was, we as a whole family including my mawma, pawpa aunt, uncle, cousin, dad and mom were completely triumphant. The trip to Nashville was quit a trip, it took about 4 hours, but we knew it was well worth it, after all three years of trying to get into the hospital is a long time. The hospital was big, huge, and in a weird way comforting. I remember that my doctor is on the 9^th floor, and we had to sign in like a regular appointment, but it was on a computer, that was odd for us but we got used to it. We sat in the waiting room only for a short period then they called us back. When the doctor walked into the door, to my surprise it was a women her name, Dr. Palaliki. She was a very pretty women dressed in nice slacks, a bright shirt, blonde hair, and blue eyes, and a personality to make you feel as if, she was a family friend. She explained, that in order to know what my current condition was, I had to have more test. I, was silently screaming, I was so over testing, but these were very nice, they gave me ear plugs to block out the loud noise, and a blanket because, I was very cold blooded. They did numerous tests, that would take forever and a year to explain, then they sent us on home. They called us a few months later and ask us to come on down. We were antsy to get our results back. We traveled that road, again, but this time more timid, for we didn’t know what they would say. The same schedule went on, go there push 9 on the elevator button, go sign in, wait, weigh, and wait. Finally, the door creaked and Dr. Palaliki came in her face shining like a new born star. She sat down with us and explained that all the doubt that had been out into our minds, might as well be thrown into the trash because, I have been accepted to have brain surgery. My father, and mother turned to me and all of us started crying, to see my father cry was like seeing a lion turn vegetarian, it never happened. She explained that the epilepsy was coming from my frontal lobes and that’s where they would be concentrating. When she explained the procedure she hit us full force, like hurricane Katrina hitting New Orleans, it took us by surprise and it was very scary. She explained, that they would go in and place these ‘grids” on my two frontal lobes, the “grids” would pin point where they seizures were firing from, if they found the region of my brain which was firing these messed up electrons they would then remove that part of my brain, if they could. They also told us that they weren’t going to be cowboys, that if they weren’t 100 percent sure that it wouldn’t work they were not going to do the procedure. Once, again we felt petrified, and in total awe that someone could do that. They, explained on our next visit to Nashville are when they would do the surgery. After, my doctor’s visit we headed home, this time the trip was complete silence.

The next few months went by in a blur; we had to get everything together including past doctors, past MRI’s, CAT scans, everything you could think have we had to get. The night before our trip was a sleepless night tossing turning and thinking of what could happen. Dawn broke and my eyes were still open, and when I walked downstairs I could tell my mom and dad had about much as sleep as I did. We jumped in the van, and off we went. We arrived in Nashville around 12:30 P.M, checked into a motel and despite the cold weather (it was August 6^th 2008), the pool was cold but I did enjoy it, after all this, in my mind, might have been the last time I would enjoy the comfort and togetherness of my family. The hotel mattress was about as soft as a rock, and the sheets were about as soft as a ride down a dirt road, on top of all that I had seizures, it was indeed a sleepless night. The morning broke, and the light shown in through the carpet looking curtains, and blinded me. By this point, I didn’t know what to think. My grandparents and aunt arrived at the hotel, and in my families presents, and knowing that they would be by my side eased my mind a little bit. My aunt Donna bought me a present that I wear on my neck to this day, it was three little symbols, an anchor that represented hope, a cross represented faith, and a heart that represented love.

Traveling down the busy highway jam packed with angry drivers, and cell phone talkers on their way to work made me laugh just a little because, as they are bickering to whoever about something probably not very important, I was thinking they should be happy for what they have got, to celebrate life and each breathe they take.

Entering the hospital this time was different, instead of feeling at home and the usual smell of cafeteria food was something different, the air was stale and the walls was no longer colored (even though they were a bright color of purple). The hospital that I knew and loved now seemed like a blank hall way with no way out. Once again, onto the elevator we walked and once again the usual routine pushing the 9^th floor button, only this time my dad in a big bear hug grabbed me his only daughter and gave me the biggest hug of his and my life we stood there crying like big babies because, we both knew that this was the day would make or break us. 

I was introduced to a new room; way different from the last few rooms I had been in. this room, was much smaller, didn’t have toys for the toddlers to play with and had an uneasy feeling that left me numb. While we waited for the surgeon to come in my father told me to calm down and don’t be frightened, at this point I was past frightened, like I said, I was numb. I only had one worry, my mom and dad, I knew that they would be out in the waiting room with my grandparents and aunt, but I also knew that they were going to have a hard time, they too were scared. The surgeon came in, it startled us, he explained the procedure one last time, and pushed this clear liquid into my IV, not soon after I was feeling pretty good, I don’t remember much after that but I do remember my dad, my daddy, giving me a hug and feeling his teardrops on my bare shoulder. One after another my family members filed in and hugged me, and then off down the hall I went. I vaguely remember the doctor holding my hand, as he put a mask over my face and said count from ten backwards. I reached seven then I was out cold, like a winter’s night.

Waking up, I felt as if my head had been put into a giant blender and turned on high. I screamed to the top of my lungs “DADDY, I WANT MY DADDY.” As if I was a little girl again that had fell and skinned her knee. The nurses shot me full of all sorts of clear liquids and cloudy substances that were supposed to ease the pain but it felt as if it only made it worse. Behind my clouded eyes full of tears and the swollenness I saw my father, my hero running to my bedside, he grabbed my hand and said “baby girl I’m here it’s going to be okay.” After, I stopped screaming hysterically they placed me on another bed, from there they took me to an X-ray room. They placed me on a hard, cold, table, and of all the things they could do, they dangled my head over the edge. I screamed as if I was being murdered, why they did that I do not know, but from there they took a picture of my recently detached section of my skull, they also stood me up with my back flat against this board so they could take several other pictures. I was in so much pain, but they had to take the pictures. All the while I was so drugged up that I could barely stand. I was placed back in my bed and I returned back to the ICU.

I don’t remember getting my head wrapped, or going to floor 7, but looking back now reminiscing, I think of the nurse that first came in. his name, was Jon. He was the night nurse, and one of the many nurses that helped me along my long journey. The first few days were pretty hectic, with my head hurting and the doctors running in and out I clearly remained in silence. I had nothing to say because, if I moved one single muscle a pain would shoot to the top of my head and it felt like I had been struck by lightning. But, as much as it hurt to move, I managed to look over in the corner which sat flowers and a plant and a big frog balloon, my dad and mom always knew how to cheer me up

Dr. Pearson was my surgeon he had a team whom consisted of, Dr. Phorbes, Dr. Ess, Dr.Gabriel, and Dr. Alexandria. They were the best team of doctors anyone could ask for. They came in not just to tell us what they were going to do next but just to say hey. You were not only a patient but a friend to them. They would stop in just to have a conversation with you. Dr. Alexandria especially, she came from a small town in Romania where they had to walk for miles to get a loaf of bread. She told my father and me of stories where her father persistently pushed her to go to school, and she would because, if she didn’t have any schooling there was nothing she could do. She told me to try hard and strive because; I have a condition and a will that no one can beat. She moved to the United States just several years before and she started going to Vanderbilt to study. She sat in a little room all day and watched brain waves of different people while they slept, they ate, and watched television and she said that amused her. She said she loved watching the little lines go up and down like a wave in the ocean. She was an inspiration to me that a woman that came from nothing could make something of herself because, she was hungry for it. It gave me inspiration also, to drive for what I want and never stop.

Not only was the doctors great but the nurses changed my life also. They was not just any nurses, they were my nurses and friends. Jon, Nichole, Amber, and Mr. Lisa and so many more, they were my life savers, they are also give thanks to them because, they took care of me physically and emotionally through these hard times. I had so many that I forget all their names but I will never forget my favorite person in that hospital, Sara.

Sara was a child life representative that brought crayons and coloring books or whatever I wanted into the room. When I think of friends I think of people that I hang out with and I can turn to if I need anything and looking back Sara was my friend. Sara, I could have called her into my room and she would be there in an instance, she would talk to me give me advise, and just hang out if I needed to girl talk. I will never forget when I was in the ICU after my second surgery, she came into my room and smiled at me with her pearly whites and said, “Do you want to meet Rascal Flats?” I was not feeling so good and at first I didn’t want to go but then it registered RASCAL FLATS! They wheeled me up to the game room since I was in ICU which is on the first floor. I was excited but at the same time a little embarrassed. My face was swollen and my hair (what I had of it) was a mess, my eyes were completely black, and I was not feeling so well but I met them, and they were HOT! I didn’t only get to have a special visit with them (they were playing for patients but they didn’t visit the ICU) but I also got my picture taken and an autographed photo with them, they also gave me a stuffed car from the movie Cars where they sang their number one hit Life is a Highway.  I was in heaven, and all thanks to Sara.

There was also a preacher, his name was Rusty and he was in his early 20 but had advise and wisdom of an 80 year old. He came into my room and prayed for me and my father and wished us the best of luck. He came in there almost every day and he comforted me. He was very nice to talk to and he was a man of God and I really liked that. I never will forget what he said to me when I was leaving the hospital “Remember Jesus is on your side, just believe.”

A few days went by, (by this time I was back on floor 7) before the doctors came back in. now, it was time to do the mapping. They explained that they would stimulate a certain part of my brain and that would show them where they could operate and what it would effect. I remember it was so awesome. They would push a button and without my help my body would move, it was like I was a puppet and my doctors was my puppet masters. It was so funny, I was rolling and so were the doctors and nurses, my body would do these funny movements, and we didn’t know what to expect next.

The next few days drug on like a snail stuck in tar. The same routine, laugh, sleep, eat, and watch TV and laugh some more. My dad was always by my side through everything, if I needed anything from more medicine to ease my pain to water he would get it for me. The doctors came in and announced instead of the two surgeries which were originally planned they had to do three. The first surgery they placed the grids in but they had placed them to far forward on the frontal lobes. So, they had to go in again and place more grids, only farther back.

The same thing happened with the second surgery but this time I was a little more at ease because, I knew I was in great hands, I knew they knew what they were doing. My daddy gave me a hug and off down the hall I went. I woke up in the ICU again crying but not as bad as the first time. The first time is when they actually sawed off part of my skull, that’s what hurts the most. They needed to take more X-Rays but my dad was not going to let them take me out of my comfort zone again, only this time they brought the X-Ray machine to my bed, it wasn’t so bad now. They wrapped my head and back onto 7 I went. I loved floor number seven they bought me balloons, flowers, even cards. By this time I had gotten used to the pain, I know that is weird to say “How can someone get used to pain?” but I was in it so much I just kind of blocked it out, and I didn’t want to cry because, I needed to stay strong not only for me but for my daddy. He sat up night after night with me while I seized and he was the one standing by my side the most.

They did more mapping only this time they were flirting with the part of my brain which made me have seizures, they gave me medicine. This medicine, I’m telling you were funny stuff, it made me hallucinate. I had all the nurses and doctors rolling. I was hallucinating that my dog, Marceono was licking my face. I was laughing hysterically and wiping my face all the while saying “Stop licking me Marceono, stop.” Thinking back now it makes me laugh, believe it or not good memories in a difficult situation.

They came back this time, with news, the way they looked made me and my dad anxious but, they broke out into a smile and said the part of the brain where your seizures are coming from can be removed. My dad and I were practically going insane for 14 years I have waited for an answer and here it is. They explained the statistics that it was a 70 percent chance that my seizures would be greatly reduced and not as bad and a 30 percent chance that they would be all gone. They also told us of the chances that came with having this specific operation that I could be left with no motion on my right side, but it would only be temporary. My dad looked at me and said “Hannah Rhea are you ready?” I looked at him and said “Dad I have been ready.” Dr. Pearson nodded at us and said I will see you tomorrow. That night my dad and I sat up talking about how the future will be and how much my life was going to change.

The next morning I woke up starving but eager to get this surgery over with, I was ready to be seizure free and ready to be a normal teenager. I gave my daddy a hug and one more time I was whisked away down that cold hall. This time when I woke up, I smiled because; I knew something was different about me I felt almost whole. Daddy was once more by my side and holding my hand and asking if I need anything “No daddy I’m going to be okay.”

I was in the ICU for quite some time this time they told us I probably would lose motion in my right side and they were right. I could not talk; moves my arm or my leg. They brought physical therapy in and speech therapy. The speech therapy made me really mad because, I knew what I wanted to say I said it in my head but all that would come out was baby talk. After awhile I regained the motion in my arm then I could talk but I could not walk that really scared me. The doctors came in and told us that I will regain the strength back in my leg, it’s just in shock because, the brain don’t like being touched, I found that funny. Well instead of going back onto seven I went to floor eight  I didn’t like this floor that much but I wouldn’t have to worry I wouldn’t be there for that long but I did meet a nice man and he gave me a stuffed dog his name was Champ and he was the mascot for the Vanderbilt Children’s Hospital.

A few days went by I was still doing physical and speech therapy and it made me mad. I had to walk with a walker and when they wanted me to move my leg and I couldn’t oh I was ready to scream. My physical therapist told us we should go to the rehab place next to Vanderbilt or go to Frazier Rehab located in Louisville, Ky. Well I was all for the one in Louisville, after all we only live and hour or so away from it. It took several days to get the approval and I was anxious I wanted to be closer to home so I could see my family and friends. The ambulance came and they loaded me onto the bed and my daddy hugged and kissed me and I was off to a whole different hospital.

The trip from Nashville to Louisville in an ambulance didn’t take as long as I expected. For a 6 hour trip it seemed like it took only 2. When we arrived at the hospital they hauled me out and onto the elevator we went, we thought we got lost but we was in the right place. They took me up to the nurses’ station and from there they found me a room.

My room was big, it was meant for two and that’s what it was going to be for, for my dad and me. It was nice too, it had flat screen TV’s and a view of Louisville that wasn’t bad. They got me settled in took my vitals and checked out my leg. They said I had drop foot, that’s where my muscles was not as strong as they used to be could not support the weight of my foot. They placed a brace on my foot that resembled a boot and they told me I should wear it only at nights. They also gave me an AFO that I would place in my shoe that would support my foot so I would not trip over it since I could not lift it up. They brought me the menu for the foot and my schedule for the next day.

I was woken up around 5:30 the next morning. I was not used to be up so early so I was grouchy, the nurse didn’t appreciate that at all but it seemed as if she was used to it by now. When she placed the food down on my pull out tray I smelled the aroma coming from the maroon covered plate and when I looked under it, it looked like heaven. The smell and the look alone almost sent me into a coma, I had not had a meal since lunch the day before and I was starving. I almost swallowed the biscuit and gravy whole but I had to chew if I didn’t want to die. After I had finished I switched on the television and turned it on Jerry Springer. It was a re-run, I had seen it before, but I don’t mind watching re-runs they get better every time. A slight knock came at the door and my dad who I thought was asleep jumped up and sat up in bed as if he had been awake for awhile. The doctor came in her name was Erin.

Erin was a happy go lucky girl; she made me feel right at home in this new environment. She explained the schedule to me, physical therapy (PT) two times a day and speech therapy twice a day. She helped me put on my new leg brace, she gave me a walker and I started walking down the hall. The walker made me feel really old, I didn’t like it at all, but I wanted to get better so I could go home. I made it to the door and I was so tired, I almost feel over. My father and Erin were there behind so I wouldn’t fall. It took a lot of energy so it took me about 15 minutes to get from my room to the work out center that was only about 25 yards away from my room. After I reached the room, I was so exhausted I had to sit down and take a break, it felt as if my legs had been laid on by my heavy puppy for hours.

I didn’t like PT too much, it was stressful and it made me aggravated when I couldn’t do something, and the speech therapy in my eyes was stupid there was no point in it since I had already gained my speech back. The same routine happened every single day, wake up, eat, get ready, go to PT, then I had speech therapy, eat, some more therapy, and bed. It got old very fast, but I knew if I wanted to get better I had to strive. They soon dismissed me from speech therapy, and I was glad. The only things now that was holding me back was the PT. I worked hard every day, and soon I was walking with a Cain. My dad went home every day to eat a good meal and visit my family. I was excited when my mawma and pawpa and step-mom came down to visit. They stayed for quite awhile and when they left it made me sad, I missed home and my little puppy. But, one day I got a very great surprise, my best friend Kalisha showed up I was ecstatic, I had missed her so much and her happy attitude. When she walked in the door I bout started screaming she came over and gave me a big hug and asked how I was. She stayed with me for awhile. We went outside and she pushed me around in my wheel chair. I didn’t know how pretty it was, the last time I had really been outside was to transport me from the hospital in Tennessee to the hospital in Louisville. The weather was great which put me in a better mood made my day complete.

Not too long after all my visits I returned home. I walked out those hospital doors a new person. I was seizure free and so happy to return home to my family and friends. My dad pulled around to the front of the building and I climbed into the van. On the way home I couldn’t sit still for nothing, I was squirming like a snake making his way through some tall brush. When we pulled into the Carroll County city limits, I said to myself “here I’ am finally at home.” Dad pulled into his normal parking spot, and helped me out of the van; he walked me up the stairs into my house, and my baby Marceono bounded around the corner and literally almost knocked me down, my step-mom had to hold him back while I reached a chair and sat down. He soon jumped on my lap and licked my face almost raw, and people say dogs have short term memory, I do not think so. I got home on a Friday, and that night when I laid my head down on my pillow I started to cry, it had been so long since I’d been home, it overwhelmed me. I had missed all my friends at school and I told my dad that on Monday I wished to return to school. They told me I could not because, I had to regain my strength and they were also afraid that I would get bumped in the hall. I agreed to stay out, only for a couple more weeks. Three days a week I attended Physical Therapy out at the Carroll County memorial Hospital, and slowly but surely I regained my strength back in my leg and foot, and remained seizure free. One day I decided I don’t need the Cain no more and I threw it in the corner of my room where it remains till this day.

Finally the day came where I could go to school. I could hardly sleep that night I was so excited. When I got up the next morning I got dressed and rushed out the door, when I reached school my parents insisted on somebody to help me around to each of my classes, but I wasn’t going to deal with that, I was independent now, so I carried the stuff myself. In each class my friends greeted me with smiles and hugs. I was glad to be back in my senior class, fore I had missed everyone and even though I hate to admit it I missed the work.

To this day I remain seizure free, it’s been over 5 months and I’m looking forward to getting my permit here in a couple days. But, if it wasn’t for the support of my family, friends, the nurses and doctors, I would have probably giving up, but I know that if you stay strong it will all work out in the end, only for the better.