Tyler, 36

Tyler and his wife, Katelin.

Tyler and his wife, Katelin.

I was diagnosed with congenital hydrocephalus at 2 months old in 1984 and had my first shunt placed when I was 4 months old at Primary Children’s Hospital. Dr. Marion Walker was my neurosurgeon and he placed a VP shunt in me to control the hydrocephalus. He told my parents that because of my condition, I would most likely never walk or talk.

I lived a fairly normal childhood (except for the one time in high school when my shunt tubing wrapped around my spleen) and defied the odds. I talked at a very early age, but was not able to walk until after my 2nd birthday. I didn’t have my first shunt revision until 2004.

I was 20 years old at that time and one morning, I woke up with an extreme headache. I was serving a mission for my church in Kentucky so I was far from home. The headaches persisted and I felt the need to go to the emergency room. While there, I had a shunt tap, and it was determined that my shunt had ceased to function, and I needed to have a full revision. I was terrified because I had never experienced anything like this before, and things quickly turned into a life or death situation. I was being wheeled into surgery, and I asked the doctor if I could make a phone call to my dad.

The doctor told me they really needed to get me into surgery and to make it a quick call. It was the day after April Fool’s Day and my dad at first thought it was a cruel joke. I quickly told my father what was happening and that I loved him. My mother was at the grocery store at the time of my call, and about had a heart attack when she got home and heard the news. The surgery was a success, however, because I experienced so much physical trauma before the operation, when I was in recovery, I had lost the use of my arms and legs for a time.

My motor functions slowly came back, but it took a few months to fully regain my strength. I was not able to dress or feed myself, and I needed assistance going to the bathroom. It was a difficult time for me but I told myself to stay positive and to look forward, not back. That shunt lasted 3 more years, then the headaches returned while I was at college. I was studying vocal performance and loved opera in particular. I found the headaches to be unbearable again, so I went to the ER. It was determined that my shunt was completely malfunctioning, but I wasn’t able to have the operation there due to the inexperience of the surgeons. So at midnight I was placed in an ambulance and was driven 3 hours to the nearest hospital.

I had a revision as soon as I got there, and thankfully I got there. Fast forward 2 1/2 more years, and during that time, I had 10 more revisions and many hospital stays. I also experienced two grand mal seizures after an operation in which my parents were told I should have been dead on the operating table. During the Christmas season of 2008, I had a pressure bolt placed to check my intracranial pressure while doing activities. I figured since I loved to sing, I would put on a little concert for my family and the hospital staff so I sang Christmas songs while looking like a one antler Rudolph.

In December of 2010 I was diagnosed with Type I Chiari Malformation and had a portion of my skull removed to fix the issue. I spent the next 10 years going through 3 back surgeries, and found out that the cause of my back issues was due to what is called Goldenhar syndrome which causes hydrocephalus and multiple back issues/skeletal issues. Between 2018 and up until a few months ago, I had 3 more shunt revisions due to a partially clogged catheter, a broken valve, and excess scar tissue around the shunt. Every time I have symptoms of a malfunction, there are days, weeks, and even months of doctor visits, tests, medications, and frustrating waiting, which can be disheartening

Through these experiences, because of my love for singing, I relied on music to get me through the hard times. It helped me focus my attention on other things and gave me purpose. It brought me out of despair and depression. I am a strong believer in the power of faith and my religion and trust in God has been a guiding comfort to me. I have learned that no matter what I’m going through, I can have a positive attitude and a determination to overcome any obstacle I meet.

My wife and my family have been my constant support and have always been there for me. They have helped me in ways I cannot even begin to express. I am indebted to them because they have lifted my spirits and given me strength. Having the opportunity of getting married, attending college despite my challenges has been a great blessing in my life. I look forward to the day when there is a cure for hydrocephalus, and I am so grateful for the Hydrocephalus Association and their determination to help those of us lucky to be called hydrocephalus warriors.

 

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