Kyle’s Story

My husband Kyle is not your typical Hydrocephalus patient. Growing up in California, he was perfectly healthy and actively involved in sports. It wasn’t until his family moved to Colorado, that he began to suffer headaches. At age twelve he was diagnosed with hydrocephalus. No illness, and no injury were responsible. Over the next 3 years, he had 15 shunt revisions. During one of many hospital stays, he became deathly ill and he was rushed into exploratory surgery. His appendix had ruptured, and the poison was about an hour away from reaching the tube that led to his brain. He recalls waking up in ICU later that night, strapped to his bed, with tubes hooked up everywhere. Although he called repeatedly for someone to come in and explain what had happened, no one heard him. Here he was, a frightened boy in a hospital room all alone and not having any idea what had just happened to him.

Flash forward to summer, 2004. It had been 17 years since his last surgery, and he began to have headaches. He was admitted to the hospital, and underwent a series of tests. He had slit ventricle syndrome, which meant his ventricles did not enlarge like most Hydrocephalus patients. His dad, having seen Kyle’s symptoms many times before, was certain he was having a shunt malfunction. Having moved to Texas, he did not have a neurosurgeon yet, so the hospital called in who they referred to as “the top neurosurgeon in town”. We sat through the most horrifying discussion I’ve ever had in my life. Kyle had dual shunts… one of which hadn’t worked in years, the other that was failing had brain tissue growing into it and would most likely cause brain damage or death if removed. The doctor’s words were “you are my worst nightmare”. We began to pray, as did many of our friends and family. The next day, Kyle started getting a slight cough, which suddenly made his head “rush”. The more he coughed, the more the pressure in his head began to ease up. By the second day, he felt well enough to go home. Why, you might ask, did coughing help his intra-cranial pressure? During his appendectomy, to keep the poison from reaching the tube and going to his brain, they had re-routed it from his abdomen to his chest. As a result, every year he would get a bad case of bronchitis. All the coughing would put pressure on his tube and flush it clear. The winter before in 2002, tired of getting sick, his doctor had given him a pneumonia shot. Without all the coughing to keep his shunt clear, it began to clog up. That cough in the hospital literally saved his life.

Two years later, no amount of coughing could clear his failing shunt. Our worst nightmare was upon us… a failing shunt, and no neurosurgeon confident enough that he would come out alive. Before driving him to the hospital, he typed… with his eyes closed… a goodbye letter to me and the kids. He made me promise not to read it unless anything happened. After taking him to the hospital, I came home long enough to pick up some things for the kids so they could stay at my dad’s. Going against his wishes, I read the letter. I was already thinking the worst, and that was like heaping coals on a fire. I called my mother in hysterics, who drove down from Arkansas that night to be with us. Monday, Tuesday, came and went. My husband was lying in a hospital bed, pressure increasing, and no surgeon. Finally on Wednesday, we met an amazing surgeon, Dr. George Cravens, who came in and immediately had a plan. He would remove the old shunt that had never worked, and leave the other one alone. Kyle had his 16th shunt revision that Friday, and has no memory of that week in the hospital. Although he was the one in pain, I think I suffered the most.
In September 2010 his shunt, this time a programmable shunt, failed again. His doctor was out of town, and one of his associates had to perform the surgery. When he removed the failed shunt, brain tissue had grown into it, and had torn causing a brain bleed. That blood in turn filled the new shunt and caused it to clog up and fail within the week. Six days later he was back in surgery for his 18th revision. Since that surgery, he has suffered 3 grand mal seizures, several petite mal seizures, short term memory loss, dizziness, fatigue, nerve pain, and inability to concentrate. After working as a Corporate Sales Coach over 150 employees, he is now disabled. Do I blame the surgeon? Probably. Is there anything that can be done about it? Not really. You see, it’s been a hard road these last three years, but God has used this situation for HIS glory in more ways than you can imagine. Our marriage, which had suffered in part due to his Post Traumatic Stress Disorder caused by that night following his emergency appendectomy, began to be mended, and grow stronger than it has ever been. He has become actively involved in several Hydrocephalus support communities on Facebook, and is an incredible encourager and source of strength for those he has befriended. His knowledge of Hydrocephalus and its effects have helped many in communicating with their doctors. In addition to all of this, I have been blessed to have the honor of creating a Hydrocephalus Awareness Ribbon that is being used world wide. Life gives you challenges. We all have challenges. It’s how you handle those challenges that mold and shape your character. My husband is my hero. Who is yours?

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