My name is Marta Rawlings and I am currently 50 years old. I have a 22-year old son and am divorced. I live with my son and my sister. My story is a little different from that of most of the hydrocephalus sufferers with whom I have become acquainted. I was diagnosed at the age of 48. I had heard of hydro, but I thought it was a condition unique to babies and children.

Growing up I had all of the then usual childhood illnesses; measles, mumps, chicken pox. The only unusual illness I remember was never given a name, but I remember being sick to the point of being delirious and hallucinating. Other than that I was just a normal kid. I attended Catholic elementary school, public high school and community college. I was a slightly above average student and knew at a young age the career path I wished to follow. In 1974, I graduated from college with an associate’s degree in computer programming.

I was fortunate to land an entry level position in my field right after graduation. Over the next 20 years, I worked for four different companies and had become a respected senior systems analyst. I even found time to become a mother. At one point in my career I supervised 12 people and managed projects budgeted at over $4,000,000.

Looking back now, I may have begun showing symptoms of my hydrocephalus in 1988. I attributed my problems to career and family stress. I would have headaches that lasted for days, suffered from dizzy spells and began having inappropriate emotional outbursts. I requested a reduction in my job responsibilities and was granted it by a very understanding employer. I returned to the more technical aspects of my field and quit managing other people.

In October of 1994 I herniated a disk in my lower back while I was trying on shoes. It was rather serious and required surgery in early 1995. I developed heavy scarring around the root of my sciatic nerve. I was in constant pain and lost some feeling in my right leg. It became impossible for me to perform my work duties and I retired on disability. My sister came to live with me to lend a hand.

About 4 years ago, I noticed a steady increase in my back pain. I also became extremely sensitive to being touched. When my dog laid his nose on my calf, it was like an electrical shock. I even lost some control of the leg that had been touched. I had a new MRI of my lower back. There was no change from the previous MRI. My pain specialist was at a loss to explain my symptoms. My sister noticed that my behavior had become more volatile and extreme. When I began having visual and auditory hallucinations, I was very frightened. My family doctor referred me to a neurologist.

I had a brain CT on my 48^th birthday. The pictures showed enlarged ventricles. The neurologist pronounced it hydrocephalus and sent me to a neurosurgeon. It was just as well the doctor dismissed me, she didn’t like that my sister came with me and asked questions. I went to the neurosurgeon that had performed my back surgery. We had an established history and I felt comfortable with him. He explained that some people have larger ventricles and he was not convinced that I had hydro. He ordered an MRI to see if there was any other pathology to explain my symptoms. When the MRI showed only the enlarged ventricles, my neurosurgeon recommended seeing a different neurologist for further testing. Just before Christmas in 2002, I had a cisternogram to check my CSF circulation. The results were abnormal. I returned to my neurosurgeon. He feels that I may have had hydrocephalus all of my life; my body and brain compensated for the increased pressure. Something happened to shut down my compensation mechanism. I don’t think we will ever know what caused it.

  On January 19, 2003, I had my shunt implanted. I never appreciated the insulating properties of hair until then! I noticed an immediate change when the sound of fluid in my left ear disappeared. I thought it was sinus congestion and had been treating it with over-the-counter medicine for years. The bad headaches continued for a while so the valve on my shunt was adjusted. It helped and the headaches are fewer and shorter in duration. They do get worse when the weather changes.

It’s weird to think that I have a brain drainage system in my body. I notice it is there all of the time. When I have spasms in my back, it causes pulling and pain along the distal catheter. I also get irritation in my abdomen from the end of the catheter. I have always worn my hair short and now I have to make sure it is not cut too short or it sticks up over the valve! My sister treats me as if I were made of crystal.

I do get fatigued easily. My short-term memory is not what it used to be. I used to be able to manage 5 or 6 tasks simultaneously. Now I forget what I had planned to do 3 minutes ago. Some days my equilibrium is bad. I feel dizzy as if I had ingested 3 or 4 ounces of alcohol. I’ve had to adjust my life by making notes to myself and restricting my activities on my “bad” days. I was already receiving disability benefits because of my back so I have not had to deal with the bureaucracy over my hydro. I never thought I would have a reason to be grateful for a bad back! My sister is disabled by Crohn’s disease, so we lead a rather quiet life together.

Recently I have been pushing my limits as hard as I can. My sister had gastric bypass surgery in October and suffered serious complications. She is still hospitalized and I have to handle her finances as well as my own. I am also responsible for her medical decisions because she has been mentally confused since the complications set in. I can’t visit her in the hospital as often as I would like. I have also had to make it very clear to her case manager that she will need to be ambulatory before she comes home since I can’t lift her and I am not a reliable as a support for walking.