Staten Island college student explains how hydrocephalus affects her life

Staten Island Advance By Staten Island Advance Staten Island Advance
HL Hydrocephalus.jpgDr. Jeffrey Wisoff, a neurosurgeon with NYU Langone Medical Center has treated Danielle Lucchese since she was diagnosed with hydrocephalus as an infant.


STATEN ISLAND, N.Y. -- “It’s like a plumbing problem, that’s what you have.”

Those were the words my neurosurgeon, Dr. Jeffrey Wisoff said as he handed me a copy of “Just like any Other Little Beagle,” a story and coloring book that teaches children about hydrocephalus. I was 6 years old, and he was explaining to me the condition I had since I was a baby. 


As an infant, nothing was noticeably wrong, until at three weeks old, my mother noticed my eyes moving around rapidly rather than holding a gaze. She researched, with the help of my aunt, and decided my eye movements fit the description of nystagmus, an involuntary eye movement.

With that information, my mother and I went from one specialist to the next until an MRI revealed a diagnosis of congenital hydrocephalus or “water on the brain” when I was 8 months old.

Soon after, I had surgery to insert a shunt, a tube that goes from the back of my head to my stomach so that the “water” could drain properly.

The shunt was invented by researcher John Holter in the 1950s in order to treat his son’s hydrocephalus. Prior to Holter’s lifesaving invention, people with this condition often died due to the pressure build up on the brain. Those that survived were often institutionalized because it was assumed they could not live a full, productive life.

Today shunt placement is the main treatment, coming in many different types to accommodate all the ways the pressure can affect those diagnosed.

Although over 1,000,000 people have hydrocephalus, the symptoms and challenges each person faces are different depending on which parts of the brain are affected. Some side affects include: developmental delays, physical disabilities and visual impairments.

My hydrocephalus causes the left side of my body to be weaker than my right. It was also causing the nystagmus, the eye movements my mother first noticed, because some of the fluid was putting pressure on my optic nerve.

Speaking sentences at 13 months old and walking by 2 years old, I was not experiencing major developmental delays. However, I received physical, occupational and vision therapy from kindergarten through 12th-grade to work on the side effects, including balance problems, hand-eye coordination and muscle tightness on the left side of my body.

In addition to the medical complications, ignorance about hydrocephalus can cause a strain in social situations, something I know first hand. 


The day of my eighth grade pictures in October 2005, I felt fine aside from looking a little pale. I went to all my classes, took my pictures and chatted with classmates, nothing out of the ordinary until the end of the weekend.

By Sunday, a night light felt as if someone was shining the headlights of their car directly into my eyes. A whisper, sounded like someone screaming in my face with a megaphone. Worst of all was the headache, which felt as if the entire percussion section of a high school marching band was playing on my head.

That Monday I stayed home from school and went to my pediatrician complaining of stomach virus like symptoms and the headache. My doctor didn’t find anything wrong with me, but a shunt malfunction was always a possibility.

So he sent me home and told my mother to watch if my symptoms worsened. I was rushed to New York University Hospital that Wednesday and underwent a shunt revision that Friday.

After surgery it was like nothing happened. I was sitting up, talking and eating. I even remember speaking to my paraprofessional on the phone, telling her all that had happened and asking about events taking place at school. I went back to class two weeks later. I felt lucky to be alive. 


However, I found when I returned to school that rumors had spread like wildfire about why I was absent and what had happened to me.

The most common misconception was that hydrocephalus was contagious. The rumor was supported by the coincidence that another student had a shunt malfunction around the same time I did. Some of the students and faculty thought that if I coughed, sneezed or sat next to them, they would catch what I was born with.

Other students refused to sit next to me because they were afraid my paraprofessional would yell at them for coming near me. My seat was moved to the back of the room in my math class because my teacher feared I would have another malfunction if I happened to get caught in the daily rough housing happening in that class.

Today I still deal with the side effects of my hydrocephalus, especially my nystagmus. Due to my vision I am unable to drive and must rely on rides from family or friends and Access-A-Ride. At school, I must sit front and center in class so I can see notes written on the board or any videos shown. My handouts and exams must be in large print, and I can’t look at a computer screen for more than a few hours without getting a headache. Despite these obstacles, I have learned to be open and honest about the challenges I face and not to be afraid to ask for help when needed.

Most importantly, I have learned that I am not alone.

During the summer of 2008, I typed in hydrocephalus on Facebook and opened a whole world with hundreds of people sharing experiences about how to navigate college or work, the importance of the support of loved ones and symptoms of a malfunction. 


One of my Facebook friends, Carli Clement, a 16-year-old from Westchester County, created a page called Carli’s Angels to raise awareness about hydrocephalus and funds for research for the Pediatric Hydrocephalus Foundation.

“I want them to know it affects more people than they think,” Carli said when asked what she wants people to know about hydrocephalus. “It [hydrocephalus] could happen to anyone.”

Through Facebook, Carli and I discovered we have the same doctors — Dr. Wisoff’s team at New York University.

Carli has had over 54 revisions. Despite the adversity, she has a positive attitude.

“Don’t be afraid to go out and do things, spread awareness and be yourself,” Carli said, adding, “Don’t let other people tell you what you can and can’t do.”

Hydrocephalus is a common condition

“Hydrocephalus is definitely one of the most common brain problems,” said Dr. Anthony Alastra a neurosurgeon at Healthcare Associates In Medicine, Concord.

This condition that affects about 1 million people, a number which according to Dr. Alastra is under reported, is caused by too much cerebral spinal (CSF) fluid in the brain.

Acting as a cushion, the CSF helps the brain to float in the skull. The fluid circulates through the brain and is absorbed by the blood stream as new fluid is created in the brain tissues.

The most common form of hydrocephalus is caused when something blocks the flow and creates a buildup or “water on the brain.” The causes of congenital hydrocephalus, found in infants and children, include malfunctions in the brain and infection during pregnancy.

The second type, communicating hydrocephalus, happens when the fluid is not reabsorbed into the blood system and is more common in adults.

The pressure from the buildup of spinal fluid is relieved with a shunt or a tube inserted surgically to drain the cerebrospinal fluid. It is drained to the heart or stomach, depending on the type of shunt.

A ventriculo-atrial (VA) shunt, drains to the heart, and the other, a ventriculo-peritoneal (VP) shunt empties into the stomach. Dr. Alastra sees anywhere from 10 to 20 cases of hydrocephalus a year and performs about 30 surgeries yearly, almost all of which are VP shunts.

In addition to location, shunts vary in how the pressure is adjusted.

Programmable shunts contain settings of low, medium or high pressure to help with regulating the flow of CSF, and the pressure settings can be adjusted by a neurosurgeon using a magnetic device in their office. In contrast, a fixed shunt is inserted with only one of the three settings and must be adjusted surgically. Which type is provided varies from one person to another.

Although shunting is the most common form of treatment, with advancements in imaging technology, another procedure, called endoscopic third ventriculostomy (ETV), is gaining usage in certain types of hydrocephalus. Through this procedure an opening is created in the brain to allow the fluid to flow passed an obstruction. If it successfully establishes circulation and drainage of the fluid, a shunt is not needed.