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Essays

The Fight for Normalcy

By Billy Thrasher From Issue No. 8

Randy Siems was only thirteen years old but had had enough.

“I’m gonna’ try and blow my lungs up.” Not only did his skinny five-foot eight-inch frame weigh a mere one hundred twenty-five pounds, but it also had what Randy called a crater in the middle of his chest. So, he went downstairs, grabbed two dumbbells, and leaned back onto his fathers’ work bench, intent on using the butterfly exercise to blow up his lungs. At this time, Randy did not know that the cause of this deformity was Pectus Excavatum.

According to Pectus.com, Pectus Excavatum is the most common congenital deformity of the anterior wall of the chest in which several ribs and the sternum grow abnormally. This produces a caved-in or sunken appearance. It can be present at birth or may not develop until puberty, as was the case for Randy. Up to the age of thirteen, Randy loved to ride his bike and swim, but when he entered puberty the crater in his chest become noticeable.

Randy said, “It was so extreme that if I had a shirt on, and the wind blew, it would just blow right into the crater.”

Not only was his chest a cause of anxiety, but Randy’s earliest recollection goes back to kindergarten when he received weekly shots of epinephrine to combat his asthma and took a daily prescription medicine to alleviate his allergies. Though Randy was a sickly child, he was also active with what we now call Attention Deficit Disorder. This combination of health ailments kept him in what Randy considered a constant struggle for normalcy.

As he sat in the basement on the workbench and took a gigantic breath and spread his arms outward into the butterfly position, he said to himself, “If my chest pops like a balloon, I’ll just fall over there. I just don’t care. I don’t care.” Randy brought his arms together above his chest.  It didn’t pop. He did it over and over again, and still nothing popped. He did twenty more repetitions, and still nothing happened.

Finally, Randy put the weights down and stood up. The first thing he noticed was that he could breathe a lot better. He was so excited that he ran upstairs and told his mom, but she told him to stop because the doctor said the extra activity would aggravate his asthma. She also said, “I’m gonna tell your father.” But filled with this new discovery, Randy said, “I don’t care if you tell him. I’m doing it again.” So he went downstairs and finished his workout. This was the beginning of what would become his lifestyle.

By the time Randy was fifteen, he had committed to a seven-day workout routine—two hours each day devoted to lifting weights and cardiovascular exercises—which kept his asthma under control. The allergies were also controlled because he had completely changed his eating habits, eating food primarily from the Shaklee food and supplement company. This was very expensive for his parents. At this point, Randy said, “I beat the asthma. I beat the allergies. Now I’m gonna get rid of this crater in my chest because this thing is ruining me.”

Randy was at a friend’s house when he saw a picture of Arnold Schwarzenegger. Randy said, “I want to be like that. You know why? Because Arnold doesn’t have a crater in his chest.”

Arnold Schwarzenegger had yet to star in his breakthrough film “Conan the Barbarian” but had won the “Mr. Universe” competition as an amateur (once) and as a pro (three times) as well as the title of Mr. Olympia. The poster displayed Schwarzenegger’s classic pose: left arm bent, hand behind his head showing his tri-cep, right arm horizontal and flexed to show his bicep, and ripped abs that funneled up from his trimmed waist. But Randy was focused on the two pectoral muscles on each side of his chest that measured 57 inches in circumference and allowed him to bench press more than 500 pounds. 

Randy’s incentive was to lift enough weights to make, as he put it, “big fat muscles” to fill up the crater in his chest. By age fifteen, he had grown to about five-feet-ten inches and weighed one-hundred-fifty pounds. For the next two years, with the help of a friend who worked at the appropriately named New Life Fitness Center, Randy was able to access more advanced weight machines. After two years, Randy had grown another inch but only gained twenty pounds. His arms, chest, and shoulders were getting bigger, and he thought he was going to correct his deformity. So he committed to his routine up to the age of twenty-one and gained another twenty pounds of muscle. But after all his work, the crater was still there.

At his point, the deformity was taking a serious chunk out of his social life. Wind was pushing his shirt into the crater, making the impression of an empty bowl. He never went to a public swimming pool. Randy had yet to have a long-term relationship, and any time he had a chance of becoming intimate with a girl the lights had to be turned off.

The next step was steroids. He wanted bigger muscles, not for strength but to fill the crater in his chest. The steroids worked on his muscles. Randy went from one-hundred-ninety pounds to two-hundred-fifteen pounds in only four months. Though he got bigger muscles, the crater was still there.

For those diagnosed with Pectus Excavatum, many scales have been developed to determine the degree of deformity in the chest wall. The Haller index is measured by forming a ratio of the distance of the inside of the ribcage and the shortest distance between the vertebrae and sternum.  A normal chest index is 2.5, and an index over 3.25 is defined as severe. Randy’s Haller index was measured at 4.6.

Randy was furious. He read an interview in which Arnold Schwarzenegger said that pullovers were the best way to expand the rib cage.  Randy thought this was the answer for sure, so he “did more pullovers than anyone in the state of Missouri,” he recalled. By the time Randy was twenty-five years old, he was six-feet tall and weighed two-hundred-twenty pounds. But his chest still had the crater.

He had been fighting this deformity for more than ten years and had not won. He only knew he had to work harder.

The deformity was in control of all his decisions. Not only from a physical point of view but from a mental perspective as well. He was determined to hide his deformity from everyone, so he came up with excuses to avoid any activities that involved showing his chest and began to fill all of his time with work.

Three principles governed his life: work harder in the gym, work harder at his business, and above all, become an overachiever at everything he was involved in. Randy thought he had it covered. He spent many hours as a salesman for his construction company, working ten to twelve hour days, six to seven days a week. His company grew, and when he sensed the market begin to slow, he sold the company at the age of thirty-five. Then he entered the real estate business, buying and rehabbing houses and keeping some as rental homes. He spent all his free time in the gym, and he wanted to be the best he could be to show people that he was just like them.

Randy’s mental obsession with his deformity was not unusual. According to Pectus.com, Pectus Excavatum often plays a major factor in all decisions made by those born with it. Even after having the correction performed, former patients often don’t participate in anything that will reveal their chest. The physical deformity can be corrected, but the mental struggle never leaves them.

Randy continued to “work, work, work” with little to no social life until he was forty-three years old and still hiding his deformity. At this time, he was exercising at Gold’s Gym in Creve Coeur every day of the week but no longer taking steroids, though he had switched to an over-the-counter supplement to take their place.

One evening, while working out, he loaded the straight bar with three hundred and sixty-five pounds, his usual routine. As he pushed the bar above his chest, he heard a pop so loud it sounded like a car crash. He lay there in shock, and soon realized that his pectoral muscle had torn away from his clavicle and was sagging at his rib cage. He was taken to the emergency room at DePaul Health Center but could not get surgery at that time because it was discovered that he had Atrial Fibrillation, an irregular heartbeat, which requires a special sedative for surgery.

Eventually, his pectoral muscle was repaired, but the Atrial Fibrillation caught Randy’s attention. After doing some research, he found that it could be related to Pectus Excavatum. After thirty years of dodging social situations to hide his chest and lifting weights to fight his deformity, finally, because of a freak accident, he had discovered the origin of his constant torment. Yet Randy did not dwell on the past, because now he knew exactly what he was fighting.

He began to post in a forum on the pectusinfo.com website, along with other people dealing with the same deformity. Eventually, he communicated with Steve Chen, a doctor in Hollywood, California, who was a specialist in the Pectus Excavatum surgery. By this time in Randy’s life, overachieving tendencies had become so engrained that he expected the same from anyone else, especially a doctor who was going to operate on his chest. Before hiring a doctor, Randy’s requirement was that the doctor had performed a minimum of 250 operations.

At this time, three primary methods were used to repair Pectus Excavatum: the Leonard, Nuss, and Ravitch procedures, or a combination of Nuss/Ravitch.

The Ravitch procedure is invasive and involves cutting away the rib cartilages and flattening the sternum. One or more bars (or struts) may then be inserted to ensure the sternum keeps its shape.  The bars are left in place until the cartilage grows back, usually about six months, and then removed during a simple out-patient surgery. This procedure is not widely used because it is considered invasive due to the incision into the skin and removal of cartilage.

The Nuss procedure, developed by Dr. Donald Nuss, is widely used because it is minimally invasive. Two or three incisions are made on each side of the chest, depending on how many bars the patient is going to receive. The bars are inserted through the incisions and under the sternum. The bar is then flipped, and the sternum pops out. A stabilizer plate is also inserted around the bar and the rib cage in order to support the bars and keep them in place. After a period of two to four years, the bars are removed from the patient chest during out-patient surgery.

Randy requested the Nuss procedure to correct his Pectus Excavatum.

He wanted an expert in the field of Pectus Excavatum; Dr. Chen had only performed six operations. Regardless of the number of surgeries that Randy wanted his surgeon to have performed, most of the doctors he contacted would not perform the surgery because he was an adult. At this time in America, the Pectus Excavatum correction was only performed on children and adolescents.

Randy’s search continued until he found Dr. Klaus Schaarschmidt, or Dr. Schar, whose practice was located in Berlin, Germany. 

Randy contacted Dr. Schar, and the first thing he said to Randy was, “I’ve been waiting for your call.” The doctor had been reading the forum at the Pectusinfo website and knew about Randy. After thirty years of waging war against himself, he was finally talking to the man who could help him correct this deformity.

On November 20, 2007, at the age of forty-five, Randy flew to Berlin, Germany to correct what had plagued him for more than thirty years. Though Dr. Schar had performed this procedure on all ages, at this time Randy was the oldest adult in the world to have this procedure completed.

Today, Pectus Excavatum is detected early in life and corrected regularly in children and adolescents before they reach adulthood. The procedure is similar to getting braces, in that after a certain amount of time—after the bones have been reformed to a normal condition—the bars are removed.

Still, many patients who have had the correction still won’t go out in public with their shirt off or participate in activities they think will reveal the deformity they used to have.

Randy never accepted that he was going to be “a sick kid, sitting on a couch.”  His parents always told him it was no big deal and to ignore it, but Pectus Excavatum is a physical and mental deformity that had factored into every part of his life.

Now in his mid-fifties, Randy is more social than before the operation and doesn’t really mind people who see him without a shirt, though he has kept the same overachieving work ethic since he first began his journey. He has thought about getting the bars removed, but unless they become a health issue, they will remain in his chest.

Sources:
Randy Seims
Pectus.com

Sources no longer available:
Pectusinfo.com
Pectus.org

About Billy Thrasher More From Issue No. 8