Judy—Elk Grove, CA
I knew the gravity of the situation when we were given three doctor's appointments in one week. That week was the first step in a four-year journey of the heart. How could scoliosis be so pronounced and yet a complete surprise for me? My comfort was in knowing that I was not alone. I grew up in a medical family and work daily with children suffering from a variety of syndromes. Yet scoliosis was never mentioned. When my seventh grade daughter brought home the school permission slip for scoliosis screening I never gave it a thought as I quickly signed my name. The screening day came and went without incident. Two weeks later, near the end of the school year, my daughter and I went to her pediatrician for her routine cheerleading sports physical. I still remember the doctor's chilling words. "Do you see this curve? Randi has scoliosis." "What do you mean, she passed a school screening two weeks ago? This is so pronounced I can't believe anyone could miss it!" And yet not Mom, nor Dad, nor screening doctor noticed the twenty-six degree curve down Randi's back, or her uneven hips and shoulder blades.
I still recall my astonishment and heartache wondering how I could have overlooked the signs of scoliosis in my daughter. In retrospect, even if I had taken Randi to the doctor earlier, it probably would not have affected the surgical outcome. Knowing this does not diminish the pain a parent feels as she watches her child's daily struggles with bracing and the thought of surgery. My eyes welled at seeing my daughter casted for her brace which she would wear 23 hours a day. My hands gently massaged her sore back and rubbed lotion onto her dry rough "brace skin" that constantly bore red-purple bruises, evidence that the brace was doing its job. Seeing her literally roll out of bed and invent new postures to compensate for the rigid torso brace were both heartbreaking and comical.
The biggest challenge of the bracing years was by far clothes shopping. The once enjoyable jaunts were now dreaded as each trip ended in tears for my daughter and frustration for us both. A complete new wardrobe was necessary as the brace mandated Randi's clothing increase by 2-3 sizes. Racks of cute clothes were bypassed looking for something that was at once trendy and flowing enough to camouflage the brace. Even underwear proved to be a painful new experience in shopping as seamless undergarments were needed to avoid the deep painful impressions in the skin every seam and wrinkle left behind. Seamless full "grandma undies," undershirts, and bras were changed several times a day in the summer as the brace retained body heat and clothing quickly became drenched. Lotion massages and baby powder eased the physical discomfort but shopping for "brace clothes" was hard on my teen. I began to shop on my way home from work buying clothing for my daughter to try on in the privacy of her room. That helped. When shopping could not be avoided, we would end the excursion on an upbeat note looking for accessories, jewelry, shoes and other items that were not brace related. An ice cream treat always seemed necessary as well.
I became attuned to my daughter's fluctuating moods and tried to be a good listener. There was little I could do except acknowledge her periodic bouts of pain, frustration, and anger at this lot in life. My perky, optimistic daughter was growing up in a world of pain that was not her own making. Randi rarely mentioned that the brace hurt, but I couldn't help but notice the red-purple bruises and chafed skin under the brace to know she was in constant discomfort. Being there for her and making accommodations to ease the physical and emotional difficulties were the most I could do, and to me, that never seemed like enough.
Three years of quarterly appointments with her orthopaedic specialist ended when x-rays showed her growth was complete and bracing was now useless, and could do nothing to improve the relentless curving and twisting of her spine. Surgery was now the treatment of choice to prevent further curvature that could entail pain, deformity, and organ dysfunction in the future.
We were fortunate to have some background about spinal surgery as we had attended scoliosis support group meetings through the years of bracing. Several meetings each year featured different surgeons who presented slides and commentary detailing their surgical techniques and treatment perspective from the traditional to the minimally invasive. Once the degree of spinal curvature reaches a certain point, surgery seems to be the only option. The older scoliosis patients attending the support group meetings made it clear that today's youth had the big advantage. They all wished they had surgery available to them in their younger years and encouraged the teens to wear their brace to possibly avoid surgery.
Having the great fortune of being one of Dr. George Picetti's patients for three years, we did not hesitate to opt for his thoracoscopic instrumentation technique of aligning and fusing the spine endoscopically through five one-inch incisions down the side. Dr. Picetti thoroughly explained the procedure and risks. My daughter's prime motivation was the thought of having five one-inch incisions down her side as opposed to a twenty-four inch scar down the middle of her back. As a parent I was naturally concerned about my daughter's post surgical self-confidence as well as the thought of less body trauma and pain in conjunction with a shorter hospitalization and recovery period. Dr. Picetti's technique plus having a wonderful patient-doctor relationship with him for the past three years made the decision easy. The wheels were in motion for a May surgery - the date selected as it was after the Junior Prom, of course!
My job was now to coordinate every detail so that my daughter could concentrate on completing the schoolwork of her junior year one month early. The school and teachers were accommodating and flexible in allowing Randi to do supplemental readings as well as complete reports and worksheets in lieu of the lectures she would miss. Besides scheduling college entrance exams and pre-surgery testing, we visited the hospital where Randi would be staying. The nurses and staff were friendly and helpful and relieved some of the anxiety. The head of the scoliosis support group visited our home with gifts of pamphlets and books to prepare us for the big day.
Surgery went smoothly. Randi did have an unexpected complication that was anesthesia related, thereby extending her hospital stay past the usual three days. I stayed with her day and night at the hospital, my husband and son coming in daily to relieve me. It was important to my daughter for me to be with her as days and nights were indistinguishable. Being sedated, she did not have the strength or clear mind to tell the medical staff her needs. She was comforted by always having a parent there when she needed them. The medical staff mentioned that all children needed their parents to advocate and give them the emotional, mental and physical support they needed during hospitalization. The nurses showed me how to bathe, massage, and help turn my daughter, giving her motherly comfort no stranger could duplicate. I played beautician and manicurist and read aloud teen magazines and a novel. Company seemed to be the best medicine aside from morphine.
As days turned into weeks after surgery, Randi was unable to recall most of what happened. She healed quickly and attended her brother's high school graduation two weeks after her operation. Six weeks after surgery she decided she was getting cabin fever and returned part time to her summer job as an office assistant. At the time I was most apprehensive and preferred for her to stay at home to recuperate. Now I see Randi needed to focus away from herself and the light activity was in no way detrimental to her recovery. She wore a protective brace for the three months following surgery and was able to start her senior year without a brace in the first time since the eighth grade.
Randi was intent on cramming every activity and event possible into her last year of high school. I noted she was more outgoing and adventurous than her life had been in the brace. Looking back, she mentioned that having her family and loved ones acknowledge her pain and difficulties while in the brace and facing surgery made all the difference for her. She could be angry, disappointed or venting and knew that we would not take it personally as she was just trying to work things out for herself. Most teens routinely go though these emotions but when a teen feels "different" from her peers, it can be difficult to determine "teen angst" from "brace angst." I'm sure I did not do everything right. As in raising a child, there are no manuals to show you the way. You can only do what you think is best at that point in time, keeping foremost the needs of your child.
Randi will be leaving for college soon. It has been more than a year since her surgery, and in many ways it seems as if it was a lifetime ago. We are most grateful for the surgeon's skill and updated titanium screws held in place by one short rod that allow complete freedom for my daughter. She can bend, twist and stretch with no discomfort or hindrance. It's as if her seven discs were never fused. From time to time we recall her four-year ordeal. Her voice still cracks with emotion and our eyes still well with tears. This time the tears speak of a healing as we look towards a bright future.
After reading this please keep in mind that all treatment and outcome results are specific to the individual patient. Results may vary. Complications, such as infection, blood loss, or nerve damage are some of the potential adverse risks of spinal surgery. Please consult your physician for a complete list of indications, warnings, precautions, adverse events, clinical results, and other important medical information.