Hydrohephalumps - or "A Creative Way To Get A Headache"

I have had blogs for a few years but have not used them to talk about my health nor the condition that affects almost every part of my life. I have decided to change that policy because later this month I will speaking at "Hydrocephalus Rally Day" in the Capital Rotunda in Harrisburg, Pennsylvania. Hydrocephalus (or hydrohephalumps, as my youngest daughter jestingly calls it) is a condition that affects over a million people in the United States and costs over one billion dollars to treat - by very conservative estimates. To give you a very simple description of hydrocephalus, it is the increase of pressure within the cranium caused by fluid build up around the brain. It can be caused by injury, malformation of the brain, cysts, tumors, and other situations that cause fluid to rapidly enter the brain or cause the impingement of the routes that allow fluid to flow out of the brain. It can be present in fetuses or occur in elderly people without warning. In fact, many people previously diagnosed with "old age" symptoms of memory loss, dementia, imbalance and incontinence are now being diagnosed with hydrocephalus.

How Do You Treat Hydrocephalus?

It has only been within the last 50 years that an effective and reliable form of treatment using a procedure called "shunting" has become widely used. You can read about the history of hydrocephalus and its treatments on "Medscape." This shunting technique has become highly sophisticated, but still uses many of the same principles developed by its inventors. Before the latter half of the 20th century, the prognosis for someone with hydrocephalus was not good, especially for someone born with the condition. In those cases, the child and sometimes the mother did not survive birth. If the child did survive, he/she was most likely brain damaged and died within months after birth. Today, with the help of shunts, many people with hydrocephalus are living happy and productive lives. However, a very large number of people who receive shunts still have a shortened life span and need additional surgeries, medications, valve adjustments and other medical treatments for hydrocephalus throughout their lives. There is still a great need for further research into the condition, its causes and how to treat it.

If you know someone with hydrocephalus or who has a loved one with the condition, there are now places that they can go for support and to obtain more information about the condition, its treatment and even find the names of medical professionals who specialize in the treatment of hydrocephalus. I recommend beginning with the Hydrocephalus Association. They have plenty of helpful information and resources.

More About Me

I was born with hydrocephalus in 1964. However, this was not determined until a complete history was taken after I had a CAT scan in the year 2000. From prior medical records and other historical information, the doctors were able to determine that I was in fact born with hydrocephalus. My mother almost died giving birth to me. Considering the incredible circumference of my head at the time, this is not surprising. What is surprising, perhaps even miraculous, is that both of us survived. In fact, somehow, even with severe headaches, misdiagnosis of ear pain as infections, misdiagnosis of swelled tonsils as tonsillitis, numerous serious falls because of imbalance, inability to focus my attention and memorize effectively, and being called a "slow learner," I still graduated from high school, won multiple awards in my musical endeavors, held jobs until symptoms became too severe in the year 2000, and have a family of my own. It took 4 more years of worsening symptoms, after my diagnosis of hydrocephalus, until I finally received my first, second, and third shunts at the age of 40 in 2004. Because of my symptoms, I was declared disabled in 2000. Although I have been feeling much better in the past year, I have not been able to find an employer who is able or willing to hire me because of the flexibility in scheduling and sick time that I require. I still suffer debilitating headaches, memory loss and balance problems from time to time, especially if a quick moving storm front moves through the area or if I do not sleep well causing my Intracranial Pressure (ICP) to change. Still, to be here, to experience life, to watch my children grow up - these things make every difficulty worthwhile.

Feeling better has also allowed me to once again enjoy performing. Although extremely frustrating for myself and the director while I was learning my lines, I played the lead role in a community theater production of "The Drunkard," a musical by Barry Manilow. Memorizing the lines was incredibly difficult, but I did it. We put on 6 performances of the show which was well received by the audiences.

The greatest and most rewarding benefit of feeling better is being able to participate in the lives of my wife and children. I had been both physically and mentally absent for a few years due to the pain and other symptoms related to my hydrocephalus. Although the sadness that I feel for having not been a better father to my older children is almost too much to bear at times, I am trying to find ways to re-enter their lives and become a real father to them now. It is difficult to know how to approach them because during the "ramp up" of my symptoms, their mother and I got divorced. We are all testing the waters and trying to find a way to better relationships with each other.

Well, I think that I have run long enough with this post, but I will post again on these subjects. By the way, I spoke at a Hydrocephalus Awareness Rally Day press conference recently to promote the passage of a resolution within the Pennsylvania Legislature to name November as "Hydrocephalus Awareness Month." You can view my "speech," below.