The Brain Drain

In late 2002 I was diagnosed with hydrocephalus. It is a chronic condition of the brain that causes cerebrospinal fluid to build up in the brain. Normally the brain creates and absorbs this fluid as needed to carry nutrients. Usually it is diagnosed in infants whose skulls are not completely formed and may become enlarged from the condition. Some of us either develop it later in life or live with it for years before exhibiting symptoms. My doctor feels that I am one of those who have had the condition for years, but now my body cannot compensate.

I remember having headaches for years, but attributed them to stress. I was a systems analyst and a single mother. My career was accelerating. I was supervising 13 people and managing 3 major projects. I loved the stress, but the headaches were becoming worse. When my son had a crisis, I reduced my workload to be with him. The headaches were still bad. Then I retired because of my chronic back pain and the headaches did not let up. I still attributed them to stress. I did not have the career responsibilities any longer, but it was hard for me to go from having a demanding career to full-time mother.

When my sister moved in with me in 1995, she noticed that my moods were unpredictable. I would change from being up and happy to extremely depressed in a matter of minutes. I knew that I could be angered very easily, but thought that was part of being in constant pain.

I was also having trouble with my balance. During a walk down the hall to the bathroom I would sometimes run into the wall. I used to do a lot of do-it-yourself projects at home. I installed ceiling fans, upholstered furniture and put up wallpaper. Now it was not safe for me to stand on a single step stool. I fell off ladders more than once. My sister and I both thought it was due to the function deficit in my right leg from the herniated disc.

I started having auditory hallucinations. I can’t even pinpoint when it started. I would hear a dog barking with both of our dogs in the room. They weren’t barking, but I still thought I heard a dog barking in the room with us. I would go to the door hearing a doorbell or knock and no one was there. At first my sister would simply placate me by saying she must have missed what I heard. When it became more frequent she admitted that there was no sound to be heard. I blew my top more than once thinking she was just trying to piss me off.

When the visual hallucinations started, I got scared. At first they were just dots or flashes. Then I started seeing animals and large bugs. It was hard to read because I would be distracted by non-existent figures. The day I thought I saw I man in a green shirt in my bedroom, I decided it was time to go to a neurologist.

I had a brain MRI on my birthday in 2002. The results showed that the ventricles in my brain were enlarged which is indicative of hydrocephalus. The neurologist referred me to a neurosurgeon. I went to the same doctor who had performed my back surgery. I knew him and felt comfortable with him. He agreed that hydrocephalus was a possible diagnosis, but thought it had been decided too quickly and needed more investigation. I went to a different neurologist for more tests. (I changed doctors because the first one didn’t seem to like me having my sister in the room with me. She became peeved when my sister asked questions and demanded to know what my sister’s qualifications were.) The second neurologist performed a spinal tap and a test involving the injection of an x-ray detectable dye into the spinal fluid. It was unpleasant, scary and painful, but necessary. I had to go back to the hospital for x-rays for 4 days in a row to measure the absorption of the dye. The results were all positive for hydrocephalus, so surgery was scheduled to implant a shunt in my brain.

The shunt is a very simple device. It is a drain that runs from my brain to my abdomen. There is a valve on the shunt that controls the flow. Apparently over-draining is more dangerous than pressure build-up. The pressure valves were developed in the 1950’s by an engineer whose son suffered from hydrocephalus. He wasn’t able to save his son, but millions have benefited from his work. I was so freaked out about having the surgeon drilling through my skull and putting a catheter in my brain that I didn’t even think about how the rest was going to be implanted. When I woke up with pain in my lower abdomen, it started to dawn on me. I had a 3 inch incision just below and to the right of my navel. I still didn’t think about how the drain was run under my skin. Then the bruises started showing up. They use a thing called a trocar, which is just a fancy name for a hollow rod, to push the drain down the body under the skin. I ended up with a bruise running the entire length of the shunt. When I had my first mammogram after the implantation, I discovered that the shunt is visible on x-rays. Since my shunt was implanted as an adult, I should not need to have a revision (replacement) unless it fails due to an infection or damage in an accident. I do not envy those who get shunts as babies. They have to have revisions because of their normal growth. The only thing I have to do that is out of the ordinary is to take an antibiotic before any medical procedures and that includes a simple cleaning of my teeth. Medical implants are prone to infection, so a preventive dose of antibiotics is recommended.

I had another symptom that I did not realize could be related to the hydrocephalus until the day after my surgery. For years I had popping and crackling noise like fluid in my left ear. I thought it was because of year-round allergies. When I woke that morning I noticed that the sound was gone. It comes back sometimes and on those days I have headaches and balance problems. I’ve also been diagnosed with Meniere’s disease which affects the inner ear. So whether it’s the Meniere’s or the hydrocephalus affecting my balance, I try not to climb anything but stairs.