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Brain Surgery - My Experience
by Carroll James Duncan
Have you ever had frequent headaches? Have you considered that there might be something wrong with you? Did it ever occur to you that you could have a brain related problem? The disorder that required brain surgery was causing me intense headaches and getting a diagnosis was difficult. Brain surgery, for me, was a very traumatic experience that had a big impact on my life. As a result of brain surgery, I lost mental and physical abilities and it left me in a depressed state. I am still healing from the surgery and do not know when I will be completely healed.
In 2005 I was getting frequent and severe headaches. Up until May 27, 2005, I was working hard doing a contract job for the Sprint telephone company. I was traveling around central Ohio installing DSL (Digital Subscriber Line - high speed internet through phone lines) service for Sprint customers. My headaches often led to nausea and vomiting, which grew progressively worse on a daily basis beginning in March or April of 2005.
Getting a diagnosis was difficult. I had approached my doctor several times regarding my headaches. I requested a CT scan (Computed Tomography), also known as a CAT scan. Only after I told her that there was a history of brain tumors in the family and the fact that I had a day of mild amnesia did she order a CAT scan; I had to go through two doctors in order to get my symptoms diagnosed. The first was a male doctor, but my wife switched me to her doctor when the first doctor would only prescribe headache medicine for my symptoms.
On May 27, I finally got in for a CAT scan, which revealed results that disturbed the radiologist and caused me to be sent to the emergency room. The CAT scan was provided by St. Anne’s Hospital, where my wife works; my wife was off that day to be with me as the CAT scan was administered and stayed with me in the emergency room until my mother arrived. Thirteen hours later, just after my mother arrived, I was finally transported to Riverside Methodist Hospital. The delay was caused because Riverside was waiting for a bed to be made available for me. In fact, I understand that the ambulances were busy shuttling patients around. The diagnosis results from the CAT scan revealed that there were 3 cavernous hemangiomas or malformations (benign tumors), in my brain, which were causing a condition known as hydrocephalus (spinal fluid build up on the brain). The malformation that concerned the doctors the most was in the center of the brain in a place called the third ventricle.
Surgery took place on June 1, 2005. I have no memory of this event other than the preparation when I was shaved bald and a nurse or PA placed little multicolored adhesive discs on my head, which I was told were to help guide the doctor in surgery. Our minister from church was there who gave an intercessory prayer for me and anointed my head with oil. After the nurse or physician’s assistant placed the little discs on my head, the anesthesiologist arrived and gave me a dose of morphine; that is the extent of my memories of the preparation.
After surgery, in the Intensive Care Unit (ICU) my wife fed me; she later told me that during this time she had to move the food to the right side of the food tray before I even acknowledged or noticed it was there and started eating; the therapists had written in their reports that I was ignoring my left side. For the longest time I could not figure out where they got that idea from, as I could not remember my time in ICU. I was also told that I would fall asleep while eating or while talking to my wife. It took a quick, brief lesson from the therapist for her to learn how to wake me. From what I have been told, while I was in the Intensive Care Unit I was very confused as to where I was. I kept saying I was in Kansas.
Two weeks post-op, 2 nurses or Physician's Assistants woke me up to remove my drainage tube. I was conscious for a few moments as they were removing the tube from the right side of my head. I awoke, looking up to lights, mirrors, and faces of people in surgical masks hovering over me. They were looking down and speaking. I don’t recall what they were saying, but I do remember the brief, intense throbbing pain I felt as the tube was snaked out of my head and then it was “lights out" again. I don’t know if I went unconscious from the pain or whether they gave me a helping dose of Morphine in my IV (Intravenous feeding) tube.
During inpatient recovery at Mount Carmel West, where they transferred me after the surgery at Riverside, I underwent daily physical, speech, and occupational therapy sessions for 12 days. My left leg had a tendency to fold up and drop out from underneath me. Another problem was that I was constantly running into the left side of walls and door frames. My left hand had a tendency to open up its grasp and drop what it was holding. The problems with my left side distressed me greatly.
According to what my family tells me, I was in a delusional state of mind for several weeks after the surgery. Because of this, my parents did not believe me when my cousins Charlie and Shannon showed up to visit. When I told my mother about this visit, she shrugged it off saying that I was imagining things; however, my wife, Connie was a witness to the fact. She arrived while they were still there because I used one of their cell phones to call her at work. She couldn’t figure out whose cell phone I was using. She was shocked when I told her who was visiting me. Charlie was involved in a quarrel with his mother at this time and would not come around if his mother was around. I was joyful for this visit. My mother finally believed me when Connie attested to the fact.
In the car on the way home, I kept thinking “Where is Somerset?” I had forgotten that it was a town in Ohio, as I was still quite dazed and confused and still did not know where I was. I was still thinking that I was in Kansas, the state where I had spent my teen years. We currently reside in Somerset, Ohio, where we have lived for the last 16 years. My mother kept informing me that we were almost in Somerset. I don’t remember arriving at home.
Upon leaving the hospital, a walker and wheelchair were sent home with me. I was supposed to use these and had been required to use them in the hospital. After arriving at home, I remember waking up in a dark room my parents had prepared for me; it was their bedroom. Again, my thought was, “Where am I?” I got up and wandered toward the door on my own without the walker; I frightened my mother, who was in the room watching me. I hated that walker and despised the wheel chair. I just wanted to be free of them. I remember thinking during this period how I just wanted to run around the yard like a gleeful playing child. Everyone was afraid to let me walk without the walker because I was still so weak and had a tendency to fall. The problems with my left side distressed me more than ever.
Ever since my hospital stay, I have been in a very depressed state of mind; I tend to cry at the smallest things. Not only did I lose physical and mental abilities but I also lost my job. Sprint phased out the need for my services and replaced my fellow DSL technician and I with union workers as the union had voted to take over what we were doing: In fact, they were training the techs to take over my job before my hospitalization. Another reason I became depressed was because I could not claim unemployment because one has to be “willing and ABLE to work”. I had to wait until October to take a special driving test at OSU to be able to drive again. The therapists and doctors were afraid that someone who had gone through such a procedure could not drive safely. They told me that individuals who had brain surgery had a tendency to be all over the road. Since I was dependent on others for transportation, how was I going to get back and forth to work? Because our income was cut by two thirds, my wife filed a disability claim for me in June, which we are still waiting on.
Brain surgery has been very hard on me, but I have moved on. Because of last year’s events with the brain surgery, and since I have nothing better to do, my wife and I decided it would be good timing for me to go back to school and work towards a Bachelors degree. In a sense, school is part of my continuing therapy. It is helping to rebuild the neural pathways in my brain. Achieving a Bachelors degree will help to fulfill dreams I had in my 20’s. Some days, it becomes a matter of survival when a fatigue spell hits me because it can be so overwhelming. Fatigue spells just about knock me down, almost putting me out of commission and making me very lethargic. When one hits me, I can sleep for 3 hours straight and still sleep all night long. Sometimes family members complain because I am always in bed sleeping or they feel I sleep too much. “After all, you had brain surgery. You are still healing,” my wife reminds me rather frequently, much to my dismay.
Although the surgery was a very traumatic experience I am still able to pursue my goals. Hopefully, the side effects will ease up and go away completely. I know God has plans for me. Throughout this whole ordeal, I have hoped and prayed and often wondered about the Christian influence I left with those who cared for me. I hope it was for the good. Perhaps God was using me for this purpose. I do know it takes a strong faith in God to endure such a trial.