My Life with a Cyst on My Brain Content from the guide to life, the universe and everything

My Life with a Cyst on My Brain

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Young person about to have a brain scan.

My name is Kane. I am a high school student from a small town in the Midwestern United States. I like technology, reading novels, short stories, and comic books, and running. I have a cyst on my brain.

So begins my Personal Space entry on h2g2. I have had a cyst on my brain since I was either six months old, since birth, or since before birth, depending on which of my doctors you ask. In any case, I have grown up with this cyst. It is as much a part of me as any other part of my anatomy or personality, and has affected me as much as or more than any other part of me. This is my story of growing up with, and living with, something that many people have never heard of and few have experienced. My life has taught me that it is possible to overcome almost anything. I hope that my story teaches you, the readers, the same lesson.

Birth and Early Childhood

As I stated earlier, no one is completely sure when my cyst developed. One theory is that it has been in my head since I was 'in utero'. Another is that it was caused by birth trauma. I was delivered with the aid of a vacuum extractor which malfunctioned and slammed into my head. The force may have led to the development of the cyst. The third and final theory is that the cyst was caused by hemorrhaging when I was six months old.

When I was still an infant, my parents knew that I was not well. I had projectile vomiting1, insomnia, and seizures. They took me to doctors and were told to try switching my formula and that they were just nervous first-time parents. One day, when I was about six months old, I had a severe seizure and was rushed to the hospital. The doctors there ran several tests, and a CAT scan2 revealed that I was hemorrhaging. I was taken to surgery for evacuation of an acute subdural hematoma3. My head was shaved and the right side was cut open. The blood was drained out and a hole was drilled in my left temple to continue draining blood through a tube. Approximately one week later I hemorrhaged again. This time the hemorrhage was revealed using an MRI (Magnetic Resonance Imaging) machine. It hadn't shown up on any of the other tests. The hospital had only recently acquired the MRI, and without it I would likely have died. Another surgery was performed - an evacuation of a chronic subdural hematoma this time, since it had occurred before. My life was saved once again, but still no one knew what had caused the seizures and hemorrhages.

Time passed, and I went to the doctor for regular check-ups. About one month before my second birthday, the doctors discovered my cyst using an MRI. Now they knew what had caused the problems, but they disagreed - and still disagree - about what to do about it. Some favoured removal of the cyst. Others wanted to leave it in, fearing that the empty space left where the cyst had been would fill with fluid, causing more complications. It was decided that the cyst should remain.

Late Childhood and Adolescence

When I was ten years old, I found out from my doctors that the cyst was actually in place of part of my brain. Previously, my parents and I had thought that the cyst was in my skull with my brain. It turned out to be replacing a portion of my right brain approximately the size of an orange. Most of the cyst is in the temporal lobe, with smaller parts in the occipital and frontal lobes.

For a while before and after finding out that part of my brain was missing I had vision problems and facial tics, similar to nervous tics or those experienced by a person with Tourette's syndrome. Both are thought to have been caused by the presence of the cyst and/or the absence of a part of my brain. A couple of years later, I began to have severe migraine-like headaches. The headaches were as painful and long-lasting as migraines, but without other migraine symptoms such as sensitivity to light and sound. I was given Propanolol which is generic for Inderal, a medication used to treat migraines and high blood pressure. I began taking it daily in January of 1998, and I have been taking it ever since. Since I began taking Propanolol, I have only had a few, short headaches and the dosage has never needed to be changed. The only cyst-related problems that I still have are difficulties with short-term memory, creative thinking (a right-brain function), lack of peripheral vision, and some hand-eye co-ordination problems such as slow response time.

Just by looking at me, it is hard to tell that I have a cyst. The only external indicators of my condition are the two scars from the surgeries and the spot where a hole was drilled in my skull. The two scars are each shaped like an upside-down 'U' and slightly overlap, forming a big 'M'. I get asked about it a lot and occasionally get funny looks, but it never bothers me. Some people have even thought that I got the M shaved in my head on purpose, but I always tell them how it really got there. The 'burr hole' where my head was drilled is barely noticeable. It is about the size and shape of the tip of a pencil eraser. There is no bone there, so sometimes it pulses with my heartbeat. It is also easy to feel it by running one's fingers (lightly) along my right temple. I have even encouraged some of my friends to touch it, especially those that did not believe that I was brain damaged.

Overall, I'm doing well for someone who has had two brain surgeries and is missing a piece of his brain. I am a straight-A student, won my county spelling bee in the seventh grade and placed fourth in the regional/state competition, am a member of my high school Scholastic Bowl team, have placed in regional academic competitions and gone to state, am currently a member of two school clubs: Astronomy and Webmasters Club, and am active in sports. My lack of co-ordination hampers my abilities in sports that involve a ball or puck, but I am a cross country runner and a sprinter in track and field.

Many times throughout my early childhood my parents were told that I might not live to be ten years old and that if I did live I would most likely be severely retarded. I sure showed them! My advice to those who read this; never let people tell you that you are not capable of doing something. You might surprise both them and yourself.

1Vomiting that is sudden and forcefully projected to a distance.2Computer Axial Tomography; a series of X-rays that shows the body in slices.3Subdural: Located beneath the Dura - a protective layer of tissue between the skull and the brain. Hematoma: A mass of clotted blood.

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