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How has having hydrocephalus impacted my life?

In the beginning, when I was a baby, I was born premature at twenty-six weeks of gestation. I was one of twins. We were both born at twenty-six weeks because my mom went into premature labor, which could not be controlled with medicine in the hospital. Due to being born early, I had a fourth-degree bleed in my head that resulted in obstructive hydrocephalus. My mom and dad were told that the fourth-degree bleed could develop into obstructive hydrocephalus or all of the bleed could be reabsorbed in the body and I would not have the hydrocephalus. I was born on May 13, 1989 along with my twin sister. My sister died after three days due to immature lungs. I had immature lungs that could be treated with a drug called Surfactant and ventilation. I was maintained on a ventilator in the hospital until my lungs matured and I was able to breathe on my own. In August while still in the premature nursery at North Carolina Baptist Hospital my obstructive hydrocephalus became known to my pediatrician and my parents. I was scheduled to have my first ventricular shunt at three months of life. This resulted in my diagnosis of obstructive hydrocephalus. I had my surgery and continued to stay in the hospital until the pediatrician and hospital personnel considered I had developed enough to go home with my parents. I went home on Sept 7th 1989 after being born on May 13th, 1989 with having had a ventricular peritoneal shunt and being on the ventilator with just nasal oxygen. I finally matured enough to eventually get off of the nasal oxygen and matured into a normal healthy toddler and child.
My parents told me that when I was three years old, I developed meningitis from getting the vaccination. Meningitis resulted in my having to have a shunt revision due to all the infection from the meningitis. For the majority of my life hydrocephalus has not interfered with my development or everyday life.
When I was in 8th grade, I started to have serious headaches that overtook my life for several months. I underwent several computer tomography (CT) scans and found out that a large cyst was clogging the shunt tubing up in my abdomen. I had made adhesions that were filling up with cerebral spinal fluid (CSF). The adhesion clogged up the shunt. After several ventricular peritoneal shunt revisions, lyses of adhesions in the abdomen and my gallbladder removed at High Point Regional Hospital, their procedures were not helping the situation, and I was still in pain from the headaches.
When High Point Regional was unsuccessful in helping me, my neurosurgeons Dr. Neave and Dr. Amundson referred me to other hospitals. My mom looked for other neurosurgeons that have dealt with hydrocephalus patients and contacted them. She found my current neurosurgeon, Dr. Martin Henegar at Carolinas Medical Center in Charlotte, North Carolina. My neurosurgeons wrote a referral and arranged a consultation with him. He gave me a consult and reviewed all my previous CT scans from then to when I was a baby. Dr. Henegar said that due to my making adhesions causing obstruction of the shunt tubing there was not an option for a peritoneal ventricular shunt anymore in my situation. I had the choice of a 3rd ventriculostomy, which was experimental, or a ventricular atrial shunt. It was just a few weeks later, over Christmas 2002, when I was put in the hospital and underwent an experimental procedure called endoscopic 3rd ventriculostomy that would eventually allow me to be shunt free. Several days later with another surgery Drs. Henegar and Heafner Sr. removed the abdominal cyst and shunt completely.
I was free from any complications for three years. On January 5th 2006, my severe headaches reappeared. My mom looked at the statistics of reoccurring hydrocephalus after the 3rd ventriculostomy on the Internet. The statistics showed there is a five-year success rate with a fifty to eighty-percent chance of non-reoccurring hydrocephalus complications. I was surprised. The next morning on January 6th 2006, I was scheduled for a Magnetic Resonance Imaging (MRI) with a CSF flow study to see what was causing the headaches. The MRI showed that the burr hole the 3rd ventriculostomy laser made in my brain was gone and covered with scar tissue. I was admitted to the hospital and had surgery on January 9th 2006. I recovered quickly and thought I was clear of any complications. I was wrong.
In the beginning of May, a few days before my birthday I started having reoccurring headaches. I had a CT scan and MRI, which showed some reoccurring scar tissue again. I was put on diuretics that made me really nauseated, Dr. Henegar and his PA John said that was not supposed to be a side effect of the medication, and the medicine seem to not be working like the last time I took the fluid reducing pill. I was sent to my eye doctor to see if pressure was behind my eyes to see if that was the problem. Dr. Digby said he did not and could not predict what was causing my headaches. I went back to my neurosurgeon with Dr. Digby’s results and was scheduled for surgery again five days after I completed my 11th grade year of high school, on June 12, 2006.
On June 12, 2006, Dr. Henegar said he was going to open the 3rd ventricle again and connect it to the 4th ventricle. He explained the procedure to me like a fisher system that allows the CSF to flow from each other and allowed it to circulate my brain then reabsorb. I always bounce back from surgery pretty fast, which is amazing I think since everything I have been through, but this time I continued to have headaches. It seems the procedure did not work this time.
Not even before my follow up appointment, I was in High Point Regional Hospital’s emergency room scheduled for a CT scan and put on steroids for the second time in one month I was throwing up repeatedly and having continuous shooting pain in my head. Two days later I was having a CT scan and MRI in Carolinas Medical Center in Charlotte. The CT scan and MRI revealed the CSF was not absorbing completely and Dr. Henegar thought my problem was with my 4th ventricle at this time. It became known that I had Dandy-Walker Syndrome, that was to supposedly present at birth, but not diagnosed to my knowledge until I was 13 years old. Dr. Henegar decided to schedule surgery this time for August 4th in hopes I would not miss any school. He decided to do an endoscopic 4th ventriculostomy that would make three to four burr holes that would allow CSF to flow freely. The procedure was done on August 4th, the surgery took over five hours, and I spent two days in the hospital and was discharged. I thought it would be my last time at Carolinas Medical Center, but I guess the fourth time is the charm. I continued to experience severe headaches and nausea.
On August 24, 2006 I had a CT scan and MRI in Charlotte. I would not get my results until August 26th. I started my senior year of high school on August 25 and was awaiting the word of what was to happen next. It seemed like routine now; surgery was scheduled for August 30th. This surgery was to be full 4th ventricle craniotomy that opened the occipital part of my brain and let the CSF flow throughout. Dr. Henegar found something interesting I have an extra membrane on the back of my brain. He thought the extra membrane lining to be the underlying cause of my severe headaches and the amount of CSF on the brain. He made drainage through this membrane and once this was accomplished it seems to be working. I spent a few days following the major surgery at the hospital in ICU and at least a day in a regular room. I was released home for several weeks until my follow-up visit. After my return to school, I had to get caught up on my work for three weeks. I graduated in June 6, 2007 and am currently attending Randolph Community College.
My life with hydrocephalus has been a journey that I will remember and never forget. Even though I live with hydrocephalus every day, it does not control my life. I hope that this last procedure with the extinctive laser work Dr. Henegar has done will be efficient for seventy years or more. The only major complications as I look back now were the headaches and the constant pain that they caused. I was fortunate to get caught up on all my schoolwork and not destroy my grades in school. This semester I have excelled in my academic classes. The effects of hydrocephalus have not limited me in what I do, but I am cautious. The impact on my life is big but in the same sense little because I am fortunate to be here: I was born 3 months premature at 2 pounds 2 ounces. I am glad every day for the life I have. I am also very thankful for Dr. Henegar and everyone at Carolina’s Medical Center.
Following the Hydrocephalus Association Conference in Park City, Utah and going to the beach fourth of July weekend I started to have headaches constantly. I called Dr. Henagar’s office and after several CT scans and one MRI we decided to have surgery again. He said based on my symptoms, there was probably a blockage. The only of action would be the ETV procedure or the VA Shunt. He said he would start out with the ETV procedure and if there was no blockage he would do the VA shunt. After three hours in surgery on August 4, 2008 he only did the ETV procedure. Dr. Henegar explained to me and my parents that my brain continues to make scar tissue for no apparent reason. He said I might have to have the ETV procedure every year or two to clean out the scar tissue or eventually have the VA shunt and not worry with the ETV. But then you have to think about all the complications with the shunt procedure. Also I would have to have two VA shunts one in my fourth ventricle and one in the third because of communication of CSF. Then the shunts would be in the form of a t or y system to connect the two catheters into one then drain to the right atrium in the heart. As I look to the future I live from day to day hoping for no more complications hoping that one day there will be a cure.