Newswise — LOS ANGELES (June 20, 2011) – Julie Flores will celebrate her 39th birthday on June 26 standing upright, something she has been unable to do most of her life because she suffered from severe scoliosis that bent and twisted her body nearly in half.
“She was so curved that she was literally crushing one of her lungs. Some of her abdominal organs and her ribs were being crushed into her pelvis. Imagine if you bent over to one side and you could feel your ribs getting closer to your pelvic bone. She was so curved that those were actually touching. Obviously that hurts a lot, and she was in a great deal of pain,” said Frank L. Acosta, Jr., MD, director of Spine Deformity in the Department of Neurosurgery at Cedars-Sinai Medical Center.
In two operations last December – 20 hours in all – Acosta straightened Julie’s spine. She spent nine weeks in the hospital before going home and now attends outpatient physical therapy to strengthen her muscles and help her adapt to her new upright posture.
“It’s a miraculous change,” said Lidia Flores, Julie’s mother. “She’s up straight now and she’s two inches taller than I am. It’s very dramatic. Her clothes now fit properly.”
Julie, who lives with her mother and father, Porfirio Flores, in South El Monte, suffers from developmental and physical conditions that began in early childhood. At age 5, she was diagnosed with dystonia, a movement disorder that causes sustained muscle spasms and abnormal postures. By the time Julie was 9, her body and spine were severely deformed.
“Dystonia and scoliosis twisted my neck and made me bent in half,” said Julie, who speaks with childlike innocence, simplicity and clarity.
“I have pictures where she was doubled over and a hump was in her back. It was terrible,” Lidia said, adding that drugs provided only limited control over the muscle contractions until later years when the symptoms began to subside.
“The doctor seeing her for the dystonia mentioned that she probably would have to have her spine fused. It was way back at that early stage that fusion was mentioned. However, my question as a parent was, ‘OK, you have somebody who can’t control her movement and she’s being bowed in half, and you’re going to fuse her spine. What’s going to happen?’ And doctors could never answer my question, so at that point I said leave it alone. But, of course, every year, every day that passed, it just got worse until it displaced her organs and compressed her lungs,” Lidia said.
“It got to the point that the doctor said, ‘You need to find an orthopaedic doctor,’ and I called and looked and searched … but there was no one in the area,” Lidia said, adding that the complexity of Julie’s condition and her dependence on MediCal for health care coverage intensified the challenge of finding a qualified and willing surgeon.
Recognizing the seriousness of her condition and the urgent need for surgical intervention, Julie said, “I was in terrible pain, and if I didn’t get it done, I would have gone bye-bye.” Her mother eventually did an online search.
“I was praying and in my mind asking God to guide me where I should go or what I should do next. I was getting desperate, and I went on the Internet and typed in the word ‘scoliosis,’ and the Cedars-Sinai Web site on scoliosis came up. It said, ‘Do you need a doctor?’ It was like it was talking to me. ‘Yes, I need a doctor!’” Lidia said with a laugh. She called the number, made an appointment with Acosta and collected Julie’s extensive medical records for review. The neurosurgeon quickly agreed to take her case.
“Julie has one of the worst spines I’ve ever seen. I showed images of her spine to my mentors and others in academic spine surgery around the country and they were quite impressed with the curvature, so hers was an extremely tough case. She’s a very sweet and loveable person with a simple outlook. When she’s feeling good, she’s happy, and when something hurts, it hurts. She wasn’t complaining loudly, but she definitely did not feel good,” said Acosta, who enjoys the challenge of difficult cases that require hours of painstaking surgery.
“One of the problems was that she has MediCal,” he added. “There aren’t a lot of surgeons who take it in general, and fewer who could actually treat her type of scoliosis. I take anything. My opinion is that very complex, very sick patients are the ones who particularly need the help of someone in a highly specialized care setting. . .” Julie underwent major operations on Dec. 27 and 29, 2010.
“The goals of her surgery were to realign her – bring her back into balance and take some of the pressure off her lung, organs and nerves. We did that by fusing the bones in her back, using screws and rods and some strategic cuts in the bone called osteotomies. The first stage was actually just placing the pedicle screws in her bone. Her spine was so crooked and rotated and twisted that we had to place the screws using CT navigation, which took all of one day. Two days later, we went in and made those cuts in the bone, straightened her spine and hooked up all those screws with a rod on each side of the spine,” Acosta said.
The years of compression caused a series of setbacks that kept Julie hospitalized for more than two months. One lung was damaged to the point that it failed to inflate properly and took weeks to improve, but Julie eventually could breathe without mechanical assistance, and her once-constant agony is now reduced to “flickers of pain,” according to her mom.
“She’s just so happy,” Lidia said.
Finally able to see herself at full height in the mirror, Julie summed up her experience in just a few words: “Frank Acosta is No. 1! He’s great!”
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