The following excerpt is taken from Chapter Two of Hydrocephalus:
A Guide for Patients, Families, and Friends by Chuck Toporek &
Kellie Robinson, copyright 1999 by O'Reilly & Associates, Inc. For
book orders/information, call 1-800-998-9938. Permission is granted
to print and distribute this excerpt for noncommercial use as long
as the above source is included. The information in this article is
meant to educate and should not be used as an alternative for
professional medical care.
This second of a three-part series focuses on emotional responses
to the diagnosis.
When the diagnosis is made, there is a wide array of possible responses: relief, shock, denial, sadness, anger, fear, and hope. All these responses are natural, common responses to a stressful situation. You also may have physical responses such as weight loss/gain, or even illness. The diagnosis traumatically affects not only the patient, but family and friends--even the family pets. The important thing to remember is to take care of yourself and your family. This is a stressful time.
While waiting to be diagnosed, patients are often run through a battery of tests so their physicians and neurosurgeons can make an accurate diagnosis. Tests may be given within a few days or stretch over weeks or even months. The tests themselves can be stressful. Waiting for results and living with the unknown is usually very difficult. You may not know what is happening. Symptoms may continue to progress. When all the tests are done and you finally hear the diagnosis, there is a strong possibility that you will feel a huge sense of relief because now the waiting is over.
I was very relieved. My symptoms were very much like those experienced if you had a brain tumor or multiple sclerosis. I was diagnosed with normal-pressure hydrocephalus, which usually can be kept under control with the placement of a shunt, which is what I had done. I felt a brain tumor or multiple sclerosis would have been a lot more devastating for me and my family.
Confusion and numbness
At the time of diagnosis, you might hear what the doctor is saying without really comprehending a word. This dreamlike state is an almost universal response to shock. The mind provides protective layers of numbness and confusion to prevent emotional overload. This allows you to examine information in smaller, less threatening pieces. It is sometimes helpful to write down instructions, record consultations on a small tape recorder, or ask a friend to help keep track of all the new and complex information.
My daughter was diagnosed with hydrocephalus in utero at 19 weeks. It came as a shock to both my husband and me. It was not something we were expecting. My obstetrician didn't really give us a lot of information, or maybe he did, but we were just so shocked that nothing made sense.
I was 37 when diagnosed with hydrocephalus. It's thought that I was actually born with the condition and that my body compensated until it could no longer do so. Everything else was ruled out. I was only working on about one or two cylinders. I was shocked that they wanted to open my head up!
It's easy to ignore something that is obvious--people do it every day. However, when it comes to hydrocephalus, it is important to trust your instincts. Problems within the brain, including hydrocephalus, often make the body react in ways it otherwise wouldn't. If you see the signs of a possible problem, it's best to check it out.
I didn't want to believe that my daughter was having problems with her shunt again. All of the signs were there, but I continued to ignore them. She was walking differently, and her normally bubbly personality had changed. But she wasn't sleeping very much either, so we assumed that was the cause. By the time we took her to see her neurosurgeon, it was almost too late. Two days after her shunt was revised, you'd never know that anything was wrong with her. I will never ignore these signs again.
After an initial diagnosis, you might use denial to shield yourself from the frightening medical situation. Denial may serve as a useful method to survive the first hours or days after diagnosis, but a gradual acceptance must occur so that you and your family can begin to make the necessary adjustments to treatment. As a parent, once you accept the doctor's encouragement about prognosis and treatment, push fears into the background, and begin to believe that your child will survive, you will be better able to provide support for your child.
My parents' reaction to finding out that I had hydrocephalus was denial, at first. An obstetrician noticed my slightly larger head when I was born in 1955, but my parents didn't believe it, so nothing was done. But when my family was told why I blacked out in 1972, my parents accepted the diagnosis and a shunt was implanted.
A diagnosis of hydrocephalus often brings a sense of loss, even when the prognosis is very good. You grieve the loss of normalcy, the realization that life will not be the same. Fortunately, as you or your child's prognosis changes for the better and as you meet or read about other people living with hydrocephalus, these feelings of sadness will slowly fade.
When I first found out my son had hydrocephalus, it was during the Gulf War--which is a blur to me--I knew nothing about hydrocephalus at all. Any information I found was so depressing I could not even read it without crying.
At the time of the diagnosis, I was told that I needed surgery. I felt so awful that it really did not phase me; I was numb to what the doctor was saying. After he left the room, about a half hour later, I looked at my father and we both started to sob.
A woman recalls the sadness she felt when her friend underwent emergency surgery:
We had only been friends a short time, and yet it felt as if I had known this person for an eternity. To look at her, you would never know that anything was wrong with her. When her boyfriend called to tell me that she had been taken to emergency surgery because of a problem with her shunt, I was saddened to think that this person who I felt so in tune with might possibly die. But thankfully, that didn't happen.
A natural response to a diagnosis of hydrocephalus is feeling fearful or helpless. Life feels out of your control. There can be fears about the threat to health or life, surgery and hospitalization, and an uncertain future. You may fear that you cannot deal with the problems facing your family or that you cannot cope with a condition that threatens your child.
My son Mike acquired a cold and his first shunt placement was delayed a week because of the congestion. I panicked and thought it was dangerous to wait, but they said the fluid had been there all that time and it would be more dangerous to operate with the bad cold. It was the longest week of my life. I did jigsaw puzzle after jigsaw puzzle. To this day I still cannot do them without flashing back to that horrible waiting period.
Fear usually stems from the unknown. It's vital to become educated and informed about hydrocephalus, for your own peace of mind and so that you can translate what you know to children, friends and family. Once diagnosed, it is important to understand what is going to happen during and after the surgery. If this means getting your neurosurgeon to explain it step by step to ease your fears, ask him to do so. Showing you or your child what a shunt looks like, how it works and where it is placed will make the surgery seem a little less frightening. When you have a better understanding of what lies ahead, the apprehension and fear will slowly become more tolerable.
My baby was diagnosed in utero as having hydrocephalus. I was scared for my baby--mostly that he wouldn't live. I have worked with children who have hydrocephalus, but all of them have some other disabilities, and I was not too aware that hydrocephalus could be a condition in and of itself. I was most frightened by what I didn't know.
Anger is a common and natural response to a diagnosis of hydrocephalus. You might get angry because of the uncertainty: waiting for test results or not knowing when another shunt revision might be needed. You might get angry because hydrocephalus makes life difficult: a symptom is causing discomfort, a revision is needed right before a planned vacation or business trip, an activity isn't possible because it could affect the condition. Or you might get angry just because it seems so unfair.
During the in-and-out hospitalizations over the summer, our son has developed quite a little attitude. As he has gotten older, the merry-go-round of surgeries has really ticked him off. He is angry that he has hydrocephalus. He is angry that his shunt fails. He feels badly he can't play all of the time with his friends. This is a lot for a six-year-old to cope with.
Since you cannot direct your anger at the condition of hydrocephalus itself, you might target doctors, nurses, or family. Because anger directed at other people can be very destructive, it is necessary to devise ways to express the anger. Some suggestions for managing anger follow.
When there is anger toward your doctor:
- Look for ways to improve communication between you and the neurosurgeon.
- Talk to other parents of children with hydrocephalus (having someone who understands what you are going through is a great source of comfort).
- Discuss your concerns and feelings with one of the nurses on staff.
When there is anger toward your family:
- Take a deep breath and wait before speaking, or walk away.
- Get outdoors or exercise.
- Join a support group.
- Keep a journal to write your feelings in.
- Reduce your caffeine intake.
- Listen to music.
- Talk with friends.
- Get a massage.
- Improve communication within the family.
- Seek individual or family counseling.
- Find one positive thing out of each day.
- Learn more about the condition.
I am angry that I have this disease, but I realize that my condition could have been worse. At first not much information was provided by my neurosurgeon except for a small booklet on shunts. But as time has passed, I have collected two more books and two more pamphlets on hydrocephalus as well as a web site.
Reaction to the initial diagnosis can be traumatizing. There could be a long, stressful period of symptoms and worry before the diagnosis is made.
The weeks following the diagnosis--testing, hospitalization, and recovery--could make you literally ill, even if you are not the person diagnosed with hydrocephalus. Eating and sleeping patterns may change dramatically. You may stop eating or grab only fast food; normal sleep patterns are a thing of the past; staying in the hospital exposes you to all sorts of illnesses. Waking moments are filled with emotional stress, which makes the physical stress more potent.
I am angry. I feel guilty for not being more persistent with my pediatrician. In the year we were trying to find out what was wrong, I have lost at least 15 pounds, and I was only 110 to begin with. I haven't slept well the whole time. My husband is a basket case over all this. Our marriage has been severely strained, but we are slowly picking up the pieces and trying to get back to a somewhat normal life. On the positive side, our daughter is responding well. The neurosurgeons were great as far as educating us about hydrocephalus.
To attempt to prevent illness, and to give you strength to deal with problems that can arise, it is helpful to try to eat nutritious meals and snacks, get a break and take a walk outdoors, and find time to sleep. Exercise is a great way to relieve stress and clear your mind, making it a little easier to enjoy a good night's sleep. Care needs to be taken not to overuse drugs or alcohol. Physical illnesses usually end after a period of adjustment.
Never give up hope. Hope is the belief in a better tomorrow. Hope sustains the will to live and gives the strength to endure each trial. Since the 1950s, treatment for hydrocephalus has steadily improved and is still improving. Your family and friends can offer support. Other families who have been in the same place you are can offer much hope.
We read many medical documents, but our uneasiness couldn't go away. We really wanted to hear anything from people who had a VP [ventriculoperitoneal] shunt operation, and about their life with it. Finally, we found a hydrocephalus listserv on the Internet, and many people responded to our request for information. It has been so helpful to us, and has given us hope for our young daughter.