After Five Years of Disappointing Treatments, Student with Cerebral Palsy Walks Again

New York City—July 30, 2013

Grasen Alexander’s life-long cerebral palsy never prevented him from keeping up with his friends on the basketball court, or riding his bike or just horsing around. But in 2007, at the age of 15, everything changed when he collapsed on the side of the road unable to walk.

Grasen’s immobility was the result of developmental dysplasia of his hip, which caused his right hip to slip out of its socket, which sometimes occurs in individuals with cerebral palsy (CP). Despite multiple attempts to correct this condition, Grasen endured five years of immobility and pain before he and his mother found the specialists at Hospital for Special Surgery whose surgical expertise restored Grasen’s mobility and relieved his hip pain.

When Grasen collapsed on the sidewalk, it wasn’t his first complication from CP. When he was four years old, he had his heel cords lengthened and in his tenth year, he underwent a tendon release in his hip. Previously, Grasen had gone through these surgeries, which were performed by a specialist nearby his upstate Dryden, New York home, recovered and resumed his activities without limitations.

Expecting a similar outcome, Grasen and his mother, Linda, returned to the surgeon. After examining him, the surgeon told the two that in addition to a dislocated hip, Grasen’s right leg was out of alignment. The specialist recommended a complicated surgery involving cutting the pelvis and turning the leg so it rested properly in the hip socket. But Grasen’s trusted surgeon, who was now quite elderly, recommended that another specialist perform the procedure. Grasen underwent a 9 ½ hour operation. Unfortunately, immediately following the surgery, a surgical plate that had been used to stabilize the pelvis slipped and he was returned to the operating room for 4 ½ more hours of surgery to repair it.

Grasen awoke in a body cast, which was there to make sure that the plate stayed in place. Soon after it was applied, Grasen began to suffer complications, including an obstruction (Ileus) of his duodenum (small intestine). When the cast was finally removed, some of the symptoms lessened but his duodenum was damaged. Grasen now needed to see yet another specialist to surgically repair his duodenum. It took three additional surgeries to restore proper function.

Multiple further surgeries to initially fix his duodenum, followed later by additional orthopedic procedures, resulted in Grasen, who was constantly laid up during this time, to be unable to attend school on a regular basis. He was tutored through his sophomore year, got through his junior year and missed his senior year of high school entirely. At one point, six-foot Grasen weighed only 87 pounds. Not only was it hard on Grasen and his mother, but it was also trying for his younger brother, Angel, who always found a way to be understanding and supportive to Grasen during years of visits to doctors, treatment centers and rehabilitation facilities.

Once his intestinal issues were resolved, Grasen’s ordeal was far from over. The partial surgical fixes of the previous years along with his underlying condition left him with his left leg out of alignment, he had a limb length discrepancy and his right foot turned inward. Grasen returned to the orthopedic surgeon for yet another surgery, this time to align the knee with the hip. After an initial osteotomy of the distal femur (thigh bone) had failed, it was recommended that he have an additional osteotomy of the proximal tibia (calf bone). However, this procedure was also only a partial fix. Once completed, he would still need a hip replacement, which would be performed by a joint replacement specialist.

When Grasen had recovered from the second osteotomy, he and his mother made an appointment with the joint replacement surgeon. The two prior osteotomies had left Grasen with one leg that was still short and pointing inward. In addition, his hip remained stiff and increasingly arthritic. After examining Grasen, the surgeon told him and his mother that the hip replacement wasn’t possible. Recalled Grasen, “He said I had too much osteoporosis, arthritis and muscle atrophy.”

Grasen was crestfallen. He had endured so much and now the door was shut. One leg was shorter than the other, it turned in, he could move around only on crutches and he was in constant pain. Desperate for a solution, he and his mother sought the advice of the surgeon who had performed the original hip surgery on Grasen. The specialist then contacted Dr. Leon Root, an authority on cerebral palsy and the former chief of pediatric orthopedics at Hospital for Special Surgery in New York City.

Recalls Grasen’s mother, “Dr. Root met with us and said to Grasen, ‘I understand the pain you are feeling and I can help you.’ I can’t tell you what it meant to me to hear that.”

After five years of surgeries, related complications and on the verge of losing hope of ever getting out of the wheelchair and walking again, Grasen was able to receive mobility-restoring hip replacement surgery from experts at Hospital for Special Surgery.

Dr. Root recommended that Grasen and his mother meet with the medical director of the Adult Ambulatory Care Center at Hospital for Special Surgery, Alejandro Leali, MD. While reviewing Grasen’s case, Dr. Leali brought in Dr. Friedrich Boettner, a specialist at HSS in the area of hip replacement and surgical repair and who he called, “number one for this kind of surgery.”

Recalled Grasen, “Dr. Boettner looked at me and said that he couldn’t believe I could function at all given the pain I must be in. I told him that I didn’t have a choice.”

Dr. Boettner assured them that the hip replacement was possible, but that it was more difficult to perform considering his prior surgeries and his underlying cerebral palsy. “He told me,” said Grasen, “that it could work, however, if not, there was a chance I would end up in a wheel chair. But he was honest and he was willing to try. I was on my way to ending up in a wheelchair anyway. So I didn’t think I had that much to lose.”

Recalled Linda, “The look on both of our faces – we were in tears. We had been told no for so long.”

Recalled Dr. Boettner, “When we first saw Grasen, he was unable to walk. One leg was shorter than the other, his hip was subluxed and he had an arthritic hip. Grasen’s surgery involved cutting the femur and repositioning it so that it sat in the hip socket properly and then performing a hip replacement during which the hip joint (ball and socket) was replaced with synthetic implants.” During the spring of 2012, Grasen underwent the 2 1/2-hour surgery. The surgery repositioned his leg, corrected most of the four-inch limb length discrepancy and rotated the leg so that it pointed forward. He was in the hospital for one week and then spent a month in rehabilitation in New York City. “It was a slow process,” recalled Linda. “It was a cautious recovery because the osteotomy had to heal before he could put full weight on the leg.” Grasen returned home once he had enough mobility to travel upstate. At home, Grasen has continued his recovery, doing physical therapy and a year later, he now walks, can get up and down from a chair unassisted, and can get dressed by himself. Most importantly, the pain is gone.

“I was on pain killers for four years,” says Grasen. “Now I can go to the gym.” Although Grasen was unable to keep up with his high school class, he earned his high school diploma by preparing for and passing the state high school General Equivalency Degree (G.E.D.) and has been accepted to attend college in the fall of 2013, where he will study computer science.

“I will always have some mobility issues,” says Grasen, now 22. “But I can now walk on my own and I’m free of pain. Before the hip replacement, it had been years since I had felt this way.”