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Lynne W. | Scoliosis Patient

My life has always included physical activity. I grew up in Southern California and participated in high school sports as well as swimming, surfing, and beach volleyball. I received a scholarship to attend Southern Illinois University as a basketball player, and it was during my pre-season orthopedic exam that the team physician discovered my scoliosis. The year was 1976; I was 18 years old, and my curve measured 21 degrees. Up until that moment, I had no idea what scoliosis was nor had I shown any signs of disability.

Between 1976 and 1980, I played both varsity basketball and varsity softball without any pain or limitation imposed by my back. After graduation, I remained active and by 1988, my training program included running, cycling, swimming, weight training, and competing in marathons and triathlons. I was even chosen to compete as a member of the U.S. Triathlon team, and in 1991 finished in the top five in my age group at the Ironman Triathlon in Hawaii.

In the early 1990’s, I started to experience low back pain. A bone scan again confirmed mild scoliosis of the lower thoracic and lumbar spine. A CT scan showed that the discs and surrounding vertebral structures were all normal from L-1 to L-4, but I knew that my back was starting to deteriorate.

By 1998, I could no longer compete in triathlons or distance running because of the low back pain that had started to radiate into my right leg. At age 40, I found myself with continuous pain in my back and buttocks and weakness in my right leg. The curve between T-12 and L-5 had progressed to 32 degrees. Through a family friend who is also a surgeon, I was referred to Dr. Lawrence Lenke.

Dr. Lenke evaluated me and educated me about scoliosis. His recommendation was to try multiple approaches of physical therapy and other non-invasive treatments before making a decision about surgery. He referred me to several professionals in the physical therapy field who taught me how to stretch more effectively and to increase the strength of specific muscle groups.

By early 2003, my curve had increased to 44 degrees, and I was in pain about 70% of the time. Although I was still “active??? by normal standards, the pain had clearly started to limit what I could do and how I felt each day. I found it very difficult to tie my shoes, pick up anything from the floor, work in the garden, or even walk up hill. My full time job as a personal trainer involved standing for several hours a day on thinly carpeted concrete floors, and that regimen was taking its toll as well. Despite all this, Dr. Lenke let me make the final decision about the surgery in my own time. He shared his analysis of my X-rays and scans and the progression of my condition, but never said, “This is something that you have to do now???.

The Surgery

Once I decided to proceed, I knew my life would never be the same again. My surgery date was scheduled eight months ahead of time, and I used that time to prepare my body and to educate myself as much as possible. I read as much as I could about spinal fusion on the Internet. Through friends, I was introduced to other people who had been through similar surgeries and were in various stages of recovery. I got two “second opinions??? from other spine specialists to confirm my decision and expand my understanding of the process. Dr. Lenke’s staff provided a checklist for advance preparations, and of course, I continued to workout in the gym so my body would be as strong as possible for the ordeal ahead.

One unique aspect of my case was that my disc between L-4 and L-5 was still sound even though the discs above and below were irreparably damaged. Dr. Lenke suggested installing an artificial disc between L-5 and S-1 rather than fuse my back all the way from T-12 to S-1. The “Maverick D??? artificial disc was undergoing clinical trials during this time. I elected to participate in these trials because of the increased flexibility I would enjoy if the device worked. The risk was that if it failed, I would probably have to endure a second surgery to extend the fusion area. However, I felt that the risk/reward tradeoff was worth making and I had a lot of confidence in my surgical team.

The actual operation involved two procedures totaling about 9½ hours. The anterior incision for the artificial disc was made first. I was then rolled over for the posterior incision and spinal fusion. My curve was corrected from 45 degrees to less than 10 degrees and my height increased by more than one inch.

The ten days following surgery were spent weaning myself from the pain medication and working with the physical therapy professionals. Dr. Lenke and/or one of his surgical associates came by to evaluate me each day and adjust medication levels as needed. The follow-up by him and his team coupled with the great nursing staff at the hospital were crucial elements of my recovery. My husband took a 30-day leave of absence from work to help care for me at the hospital. On day 10, he took me home and, with help, got me up the 20 steps to our second floor bedroom.

Recovery and Rehabilitation

Once I got home, we needed most of the equipment and supplies that had been recommended by the Lenke team. The “egg crate??? mattress cover was crucial to comfort in bed as were the variety of triangular shaped leg supporting pillows. After two days at home, I started to do “laps??? around the upstairs with my walker, and by day nine, I could walk for 10 to 12 minutes every 1½ hours. After a month at home, I could walk downstairs, do small tasks around the house even walk outside for an hour at a time. 45 days after surgery, I started water therapy sessions at my local YMCA three times per week. After 60 days, I could ride a stationary bike, walk, and use an elliptical trainer.

After the first two months, I never looked back. I started to regain the weight I lost in the hospital and gradually expand my level of activity. Today, my back pain is almost completely gone and only recurs in extreme fatigue situations. I can do things that were impossible before like gardening, cycling without pain, and sitting on an airplane for more than an hour. Unfortunately, my running days are over and some activities like skiing are too risky, but I have adjusted my activity level to the “new reality???. I still see Dr. Lenke every 12 months for evaluation and review.

Lessons Learned

  1. Deciding to have back surgery requires a major commitment. Read, analyze, evaluate, and discuss until you are ready to make a 100% mental and physical effort. It is both difficult and risky and no one can make the decision for you.
  2. Spinal surgery is one of the fastest growing areas of orthopedic research, and the baby boom population will hasten the development of new devices and procedures. Be aware of the state-of-the-art before you proceed. Ask if you are a candidate for any new treatments or clinical trials.
  3. Get your body in strong physical shape before the operation, even if it hurts to do so. Operations of this scope are a major threat and your recovery speed will be directly proportional to how well you prepare.
  4. Get off the pain medication as soon as you can; the constipation side effect is debilitating.
  5. You will need a motivated caregiver to help you. If you don’t have a loved one who has the time or inclination to learn how to take care of you in those first days out of the hospital, hire a professional.
  6. Find someone who does water therapy. The semi-weightlessness of water is a great place to advance your recovery.
  7. Be tough and positive; back surgery is not for sissies.