Guide to Pediatric Scoliosis Surgery
Pediatric Education Committee Contributors Lisa Ipp, MD H. Susan Cha, MD Stephanie Perlman, MD Roger Widmann, MD Lucia Fabrizio, MSN, RN, CPNP Anna Givant, RN Cindy MacDonald, RN Lorraine Montuori, LCSW Jennifer Crane, PT/DPT Michelle Patterson, OTR/L Maureen Suhr, PT/DPT Members of the Patient Education Council ©2009 Hospital for Special Surgery
GUIDE TO SCOLIOSIS SURGERY This booklet is designed to provide patients with information about scoliosis and scoliosis surgery, and to help parents care for their child at home. During the hospital stay, much of the care will be demonstrated and reviewed in preparation for going home. This guide is intended to supplement the information that the doctors and nurses provide. Please take the time to read through this booklet so that any questions you may have can be answered before you leave the hospital. Upon discharge, we will provide information on where to call with questions that may arise during the recovery process.
CONTENTS Background Diagnosis Treatment Options Planning For Your Surgery Post-Operative Course: A Step-By-Step Guide For Patients Day After Surgery Second Day After Surgery Prior To Discharge A Few Points On Recovery At Home Your Rehabilitation After Scoliosis Surgery Introduction to Physical Therapy Introduction to Occupational Therapy Notes On Exercises Recovery At Home Your Home Program To Gain Optimum Benefit From Your Scoliosis Surgery Your Daily Activities Personal Care After Surgery Return to School, Driving, and Traveling Adjusting Your Lifestyle with the Help of Relaxation Techniques Your Lifetime Back Program Emergency Checklist
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Background • Scoliosis is a sideways curvature of the spine that makes the spine look more like an “S” or “C” than a straight “I.” • Scoliosis can cause the bones of the spine to turn (rotate) so that one shoulder, scapula (wingbone), or hip appears higher than the other. • It can run in families, but the exact cause of most cases of scoliosis is idiopathic (not known). • Scoliosis can occur at any age. 1. Adolescent idiopathic scoliosis is the most common form of scoliosis, and occurs after the age of 10. 2. Juvenile scoliosis occurs in children between the ages of 3 and 10 years old. 3. Infantile scoliosis occurs in children less than 3 years old. • Small curves occur with similar frequency in boys and girls, but girls are more likely to have a progressive curve that will require treatment. • Back pain among patients with scoliosis occurs at a similar rate as those with back pain in the general population.
Diagnosis •
Requires a thorough medical history to determine if any other problems may be causing the spine to curve.
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Includes a comprehensive physical examination. The doctor will ask you to bend forward, which will help demonstrate any deformities. Your physician will also check for limb length discrepancies (in other words, the length of both legs for equality), waist crease asymmetry (uneveness), shoulder asymmetry, and pelvic imbalance.
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Is confirmed with a long x-ray of the entire spine. The physician will measure the degree of the curve as shown on the x-ray.
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If left untreated, scoliosis exceeding 50 degrees may be progressive. As progression of the curve occurs, in some cases, large thoracic (upper spine) curves may result in reduced lung volume and the development of restrictive lung disease. Cosmetic concerns are also significant to many patients.
Treatment Options Observation This option is appropriate when the curve is mild (less than 20 degrees) or if the child is near skeletal maturity (adult height). However, the doctor will want to re-check the curve on a regular basis during the growing years in order to detect curve progression to see that it is not progressively getting worse. You may be asked to return every 4 to 6 months for re-examination. Bracing The goal of bracing is to prevent curves from getting worse. Bracing can be effective if the child is still growing, and has a spinal curvature between 25 and 45 degrees. There are several types of braces, most of them are underarm, which means that the top of the brace will not extend past your underarm area. Your orthopedist will recommend a brace and tell you how long it should be worn each day. Wearing a brace does not affect participation in sporting activities, as time out of the brace is allowed for these activities. Surgical If the curve is more than 45 degrees and the child is still growing, the doctor may recommend surgery. If growth is finished, surgery may still be recommended for curves that exceed 50 degrees.
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PLANNING FOR YOUR SURGERY Scheduling Considerations Plan for a hospital stay of at least four days. Surgery Before the operation, you may be asked to donate blood (which will be used during the surgery as needed). If you do not meet the weight requirement necessary to donate blood, the team will speak with you about the option of directed donor blood. The surgery is performed under general anesthesia and lasts several hours. Bone graft is utilized to help achieve spine fusion, and the bone graft is typically freeze-dried, sterilized donor bone. Spinal implant devices (to help straighten the spine) may include screws, hooks, wires, and typically two rods which are used to stabilize the spine in the corrected position. Recovery You will be brought to the Post-Anesthesia Care Unit (PACU), also known as the recovery room, following the surgery, and monitored until you are ready to go to the pediatric floor (5 East).
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POST-OPERATIVE COURSE: A STEP-BY-STEP GUIDE FOR PATIENTS Day After Surgery • You will begin physical therapy/spine protocol (see Physical Therapy section of booklet) and begin to plan a home exercise program. • Pain control is managed by a special team at HSS. You will have patient-controlled analgesia (PCA), where you will be able to adjust your own dose of pain medicine for the first day or so. This is delivered via an intravenous (IV) catheter. By the second day after surgery, you will likely change over to pain pills. • Your diet will slowly advance from ice chips to sips of clear liquids. Second Day After Surgery • You will continue to progress in your physical therapy regimen. • Your urine catheter (called a foley) will likely be removed. • Your PCA catheter will be discontinued, and you will be taking pain pills to manage your pain. • Your diet should continue to be advanced to soft food, if you can tolerate it, as your appetite returns. Prior to Discharge • Physical therapy goals or milestones will have to be reached before you can go home. The goals include getting in and out of bed and walking a distance with some assistance. • You will be eating and tolerating a regular diet. • Standing x-rays are performed and reviewed by your attending orthopedic surgeon before you are discharged home.
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A FEW POINTS ON RECOVERY AT HOME Medication You will be discharged home on a personalized pain control regimen. Please follow the discharge instructions for dosages and frequency of medication. Showering Your doctor will tell you when you can shower, generally about one week after surgery. Bandage Changes The nursing staff will teach you and a caregiver how to perform daily dressing changes. Activity Many patients are looking forward to resumption of regular activities. Please check with your doctor to see if you have any activity restrictions.
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YOUR REHABILITATION AFTER SCOLIOSIS SURGERY Introduction to Physical Therapy Your motivation and active participation in our HSS physical therapy program is a vital element in the ultimate success of your surgery and rehabilitation. Physical therapy will: • Help heal and strengthen your spine while you regain strength throughout the rest of your body. • Help protect your spine while you learn to move through a variety of essential activities. • Help you get ready to leave HSS and prepare you for further recovery at home. • Prepare you and your spine for eventual return to your usual daily activities. An HSS physical therapist will see you on the day after surgery. The physical therapy time schedule is posted at each nursing unit by 10am. You may ask your nurse for the approximate time you will see the therapist. The physical therapist will instruct you in your exercise program. This program is directed toward your regaining normal activities after surgery. Soon after scoliosis surgery, you will be asked to perform gentle exercises. These exercises, such as ankle pumps and “quad” sets, will help prevent circulation problems. They will also strengthen your muscles. These exercises will be taught to you by the physical therapist. To enhance your circulation, you will be expected to perform these exercises ten times each, every hour while awake.
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Ankle Pumps Pump your ankles up and down (Bring your toes toward your head and away from your head).
Quad Sets Press the backs of your knees into the bed by tightening the front of your thighs. Hold for 5 seconds; relax.
“Dangling� Initially the physical therapist will assist you in sitting up with your legs hanging (dangling) at the bedside. This form of exercise is a first step in your becoming ambulatory (able to walk). Standing, Sitting, and Additional Activities After dangling, you will stand with the help of a physical therapist or nurse. You will learn how to properly get out of bed, to sit in a chair, and to walk. Later, you will learn to manage stairs. As the days progress, you will increase the distance and frequency of walking.
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Control of Pain During Physical Therapy For the first few days after surgery, some patients benefit from taking pain medicine thirty minutes prior to their physical therapy session. Please discuss this with your nurse and/or therapist. Protecting Your Spine The muscles in your back must adjust to your new posture and become stronger. If implants (for example, rods) to help support your back have been implanted, the surrounding tissues must have an opportunity to grow around these devices and strengthen. After some types of surgery, your back may have a new shape, which affects your entire posture and balance. The rest of your body must adjust to the “new” back as you learn to get up and down, as well as move around. If you are prescribed a brace or corset by your doctor, it will provide support and help control the movements that involve your back. Prior to discharge from the hospital, you will learn when to use the brace or corset, how to put it on, and how to take advantage of its support as you move about.
Introduction to Occupational Therapy Occupational therapy is important in helping you resume your activities of daily living while protecting your spine. Your occupational therapist will provide you with an opportunity to purchase a long-handled shoe horn, scrub brush, reacher, and stocking aide, as well as instruct you in how to use these items. You will practice getting on and off the toilet and getting dressed, and discuss modifications to various daily activities, such as bathing and school activities. Feel free to ask your occupational therapist about concerns with any activities you plan to do. Precaution Guidelines for Your “New” Spine While your spine heals and adjusts to body movement, you must make a conscious effort to protect your spine from stress or injury. The easiest way to do this is to learn the “log” concept.
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The “Log” Concept Imagine that your back, including hips and shoulders, is a rigid log, so it cannot bend or twist. Since you must maintain this rigid log position to move, you will use your arms to begin movement of your body (the log), especially when getting up on your feet from your bed or a chair. You will always need to take extra care to get your feet under and aligned with your body before turning. To face a new direction, you will learn to turn your whole body with your feet, rather than starting a turn by twisting your back. When you need to pick up something, you will learn to keep your back upright by bending your knees rather than bending over at your waist. Doing “log” movements will feel awkward at first, but soon you will realize that you are more comfortable as you move about. Eventually, these movements will become a habit. You will begin using the “log” concept in bed as you roll from your back or stomach to either side with the help of staff at first. Soon you must move to a sitting position on the side of the bed, while protecting your new back and spine. Do not attempt this movement without the help of your physical therapist or nurse. Please study the lesson on the next page. It helps explain how you move from lying down to dangling.
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How to Get Out of Bed
1. Remove pillows from under your knees and arms. You will need someone to assist you with this process. Lie on your back with your legs together. Bend both your legs at your hips and your knees.
2. With the help of your nurse or therapist, roll to your side, moving your legs and your upper body at the SAME time. Remember to move everything at once like a log. Keeping your back firmly in line, use your arms to push your body up as your lower legs come off the bed. Your therapist or nurse will help you to review these steps.
3. After you are sitting, use your arms to steady and hold your back upright. When you are going to stand up after sitting, use your arms to carefully slide your body to the edge of the bed. Remember to make sure that whatever support you need for standing is within easy reach.
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Exercise for You and Your “New” Spine Exercise is such an important part of your recovery—both short and long range—that you must integrate it into your daily activities from now on. The one exercise which is not only appropriate, but also highly desirable after all spinal surgeries, is WALKING! It will enhance healing, rebuilding your muscular structure with your new spine, and developing your lung and cardiovascular fitness. You should integrate walking into your daily life for at least 20-30 minutes every day. When you need to pick up something, you will learn to keep your back upright by bending your knees rather than bending over at your waist. Remember: No twisting or lifting anything heavier than five pounds! Your physical therapist and surgeon are in charge of defining the exercises and the level of activity that are appropriate. They will specify the schedule of learning and practicing each exercise or series of exercises. You must focus only on those exercises authorized specifically for you.
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NOTES ON EXERCISES Please write notes and/or questions here. If you are describing a complete exercise given to you verbally or by demonstration, we suggest you enter at least four things about it: 1. 2. 3. 4.
An easy-to-remember name. How to do it. How frequently to repeat it. Any precautions; for example, regarding pain or range of motion.
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RECOVERY AT HOME During the first few weeks at home, you must adapt what you learned at the hospital to your own setting. You will need to prepare your home for your recovery. 1. You will need a firm, supportive chair, which encourages you to keep your spine properly aligned. It should have a back and arms to help you get up and down with your feet supported on the floor. You may wish to add two firm pillows to a low chair to provide proper height. 2. A firm mattress on your bed is recommended. 3. An elevated toilet seat attachment may be helpful for you to use in your bathroom. If this is of interest to you, please ask your nurse for more information. Remember not to twist when cleaning during toileting. 4. As in the hospital, we suggest that you wear non-slip shoes at home. Your occupational therapist will review ways to take your shoes on and off while maintaining your spinal precautions. 5. Be sure all walking areas are free of clutter or anything you could slip or trip on. • Remove all throw rugs. • Watch out for small pets, children, toys, and whatever might be in your way! • Look to see what is in front of you and on the floor to avoid tripping or falling. 6. Place and store items within easy reach of your chair and, at the very least, on the level of your home where you will be spending the majority of your time, so that you can minimize use of stairs at first. Plan for telephone, TV remote control, reading material, note paper and pencil, glasses, pitcher of water, medications, and so on.
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YOUR HOME PROGRAM TO GAIN OPTIMUM BENEFIT FROM YOUR SCOLIOSIS SURGERY While recovering from your spine surgery in Hospital for Special Surgery, you will have had professional support to help you learn and perform many activities. Your physical therapists, occupational therapists, and nurses encouraged you to carry out the program that they devised for you. Based upon what you have learned, it is up to you to carry out your own personal program, adjusting it as you improve. Your at-home program will help you to: • Continue the healing process. • Protect and manage your back properly. No bending, twisting, or lifting! • Regain strength. • Progress toward those activities you wish to resume. • Build permanent habits in performing all activities, so that you achieve your goals, while respecting your new back. In this section are detailed instructions governing many elements of your own home program, but please remember this: • If you find any conflict between these instructions and the ones you have received from your physical therapist and/or your surgeon, call one of them for clarification. Your surgeon’s instructions are most important. • If you have any questions regarding any aspect of your own home program, please call your surgeon’s office, your physical therapist, or your occupational therapist.
Your Daily Activities During your recovery from spine surgery, you may find some symptoms disappear while others may improve slowly. It is normal to feel tired after surgery. This fatigue gradually decreases as you recover. For the first few weeks, you may need to rest frequently during the day. Gradually, you will be able to increase your daily activity. 18
Your activities should not cause pain. However, you may feel some stiffness and mild soreness in various muscles as your body adapts to your new spine, as you do regular exercises, and as you learn to manage your back. These feelings are normal. Walking • Walking each day will increase your strength and promote a quicker recovery. • Gradually increase your walking time each day. Take several short walks during the day. • Wear non-slip/skid walking shoes, and walk on even, level surfaces. Stairs • Stairways should be well-lit and you should hold onto a railing if one is available. • When climbing stairs, wear shoes to prevent falling. • After scoliosis surgery, stair use should be limited at first. It is best to try to arrange things so you don’t have to climb stairs frequently. Exercises • Check with your doctor before starting any exercise routine not prescribed by your doctor, physical therapist, or occupational therapist. Sitting Sitting may feel like a “comfortable” position for your back. However, prolonged sitting can lead to stiffness and discomfort of your lower back. Follow these guidelines to prevent discomfort in your lower back. • Initially, avoid sitting longer than 20-30 minutes at a time. Gradually increase your sitting time, depending upon how you feel. • Monitor how long you can comfortably sit, then walk before your back becomes too stiff. Avoid Twisting and Bending • Turn your body like a log as you learned in the hospital. • Keep your shoulders in line with your hips. • To stand up, slide to the edge of the chair and then use the arms of the chair to push your body up. • A long-handled reacher may be helpful to reach objects on the floor. 19
Personal Care After Surgery Dressing • Avoid using bottom drawers or closet floor to store clothes. •
Gather together all clothes that you will be wearing, including shoes and socks, on or near the bed. This avoids unnecessary trips to the closet and drawers.
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Sit on the edge of the bed to dress.
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Wear comfortable, loose fitting clothes.
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Pull shirts over arms first and then over your head. A button-down shirt may be a good option.
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If you have a brace, you can put on a t-shirt, then your brace, and another shirt over your brace.
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Avoid as much twisting and bending as possible.
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Slip-on shoes are easier to put on than laced shoes.
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A stocking aid device and long-handled shoe horn may be helpful for putting on your socks and shoes.
Because you cannot bend enough at your hips to reach your feet, putting on anything over your feet will be a real challenge at first! Socks and Stockings 1. Slide the sock or stocking onto the stocking aid. Make sure the heel is at the back of the plastic and the toe is tight against the end. The top of the sock should not come over the top of the plastic piece. 2. Holding onto the cords, drop the stocking aid out in front of your foot. Slip your foot into the stocking aid and pull it on and then off the back of your foot. Repeat for the other foot. 3. To take off your socks or stockings, use the long-handled reacher to push the sock off your foot. You may also use the notch on the shoe horn to remove your sock. Note: If you elected not to purchase or use any of these items (sock aid, reacher, long-handled shoe horn, or long-handled sponge), please be sure to have a parent, caregiver, or someone else assist you with these activities as needed. 20
Showering Your doctor will tell you when you can resume showering. Remember to avoid twisting when getting in and out of the shower. Grab bars may be helpful if you feel you need extra support. Remember not to bend. Be sure to have soap, shampoo, and other items within easy reach. A long-handled sponge may be helpful when washing your feet, legs, or back. In addition, you may want to have someone to assist you with washing these areas. A long-handled showerhead may also be helpful.
Return to School, Driving, and Traveling Return to School The timing of when you will return to school is a decision to be made between you and your doctor. When you return to school, you should lift no more than 5 pounds for several weeks or months after your surgery. A rolling backpack for school may be helpful. You may also check with your school about having a second set of books available for you in the classroom, so that you can keep one set at home. You and your occupational therapist can discuss other activities at school that may need modification, depending on your specific spine precautions. Driving You may need to drive or ride in a car. Please observe the following: • Ask your doctor when you can start driving if you are of driving age. • Wear your seat belt at all times. For longer commutes or essential travel: • At first, travel only short distances while you learn how your back adapts to riding in or driving your car. • Stop every 30 to 60 minutes and walk around for a few minutes. Getting in the car If the car seat is high, such as in a van, 4x4, or some sedans: • Sit down on the car seat with feet facing the door. • Turn the trunk of your body as one unit. • Swing your legs into the car one at a time. 21
If your seat is low, such as in a sports car: • Use the car body as support. • Lower your body as one unit down into the seat. • Avoid twisting or rotating your back. • If you find that the seat is too low, causing strain, sit on top of one or two pillows. Getting out of the car • Do the reverse of the above. Airplane Travel Tips You may have to travel on a plane as part of returning home after your stay at HSS. When you reserve your flight, we suggest that you request an aisle seat, which will be easier for you to get in and out of. You may want to inform the gate attendant and your flight attendant that you have had recent spine surgery, so they can better assist you. Sitting • Do not dangle your feet. If necessary, use a small bag for a stool. •
Do not sit for prolonged periods of time. Stand up frequently.
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Use your arms when getting in and out of your seat and be careful to avoid twisting or bending your back. Consciously practice the log concept!
Carrying and lifting suitcases 1. As your rehabilitation continues, you may be able to lift items. However, at the time you leave HSS, arrange it so that you will carry nothing more than a small handbag. Check with your physician regarding lifting restrictions. 2. Have someone carry your suitcase for you or ask airport staff to assist you. 3. A rolling suitcase may be easier for you to use both now and in the future. 4. When you lift, keep your head and trunk in good alignment. 22
5. Always use your legs (bending at the knees) to provide most of the forces needed for lifting, while keeping your back straight. 6. As you carry your bag, avoid upper body twisting and turning movements.
Adjusting Your Lifestyle with the Help of Relaxation Techniques While recovering from spinal surgery and facing adjustments in your life, relaxation techniques can reduce tension and anxiety and leave more oxygen and energy for daily activities. The most obvious sign of the need to relax is tension in your muscles. Relaxation takes practice. Initially, you need to set aside specific times to practice during the day. You will focus on your body and individually identify the muscles that are tense. Eventually, tuning in to tense, tight muscles will become automatic. You will then be able to relax those muscles and, in turn, save energy for desired activities. Methods of Relaxation • Diaphragmatic Breathing This needs to be incorporated in all relaxation techniques. Breathe in deeply and slowly, using your diaphragm to take in and then expel much more air than your lungs can alone. • Body Awareness This allows you to focus on different body parts and bring on general relaxation. Practice: Position yourself comfortably. Close your eyes and think of your face muscles—let them totally relax. Then move on to your shoulders, then your arms, then your hands. Continue to focus on different body parts, allowing each part to relax and become loose and warm. • Contract/Relax You can learn to be aware of tense, tight muscles by focusing on individual muscles; and then alternately contracting and relaxing them.
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How to Practice Relaxation Adjusting your environmental factors is key to practicing and enhancing relaxation: 1. 2. 3. 4. 5. 6.
Turn down the lights. Close the door. Be in a quiet place. Wear loose, comfortable clothing. Be in a room that is warm. Keep interruptions and outside noises to a minimum.
Your Lifetime Back Program To prevent recurrent problems and further surgery, make it a HABIT to protect your back for the rest of your life! Good body mechanics and following a program of conditioning exercises are two basic principles to keep in mind. Also, precautions around lifting are very important to follow. Good Body Mechanics Body mechanics are how you use your body to do things safely and efficiently when standing, sitting, or lying down. Good body mechanics keep your spine balanced and aligned as you engage in various activities. Keep these points in mind: • When standing, stand with your weight evenly distributed, and your feet shoulder distance apart. Your ear, shoulder, hip, and ankle should be vertically aligned. • When sitting, use a chair that supports the three natural curves of your back. Rest your feet on the floor and support your spine in the chair. Do not slump. Avoid sitting in one position too long. • When lying down, try using a firm mattress. A too-soft mattress does not provide the proper support and can cause back strain. When sleeping, try lying on your side with your knees slightly bent and place a pillow between your knees to keep the spine balanced. If you prefer sleeping on your back, place a pillow under your knees and calf area to relieve stress on your back. 24
Conditioning Exercises Exercise helps your joints, muscles, bones, and ligaments stay strong and flexible. Discuss with your surgeon when it is time for you to participate in a physical therapy program. Remember… • Think positively! • Continue with walking and doctor-permitted exercise. Controlled activity helps your back…make it a permanent part of your daily regimen. • Focus on managing physical and emotional stress. Unrelieved stress can aggravate and trigger back pain. Lifting Many back injuries occur while lifting heavy or awkward objects. From now on, you must take a conscious, thoughtful approach to lifting in order to protect your back. For now and for many weeks to come, don’t lift anything more than a light bag or a book or two (5 pound limit). Then, after your doctor authorizes “normal” activities, follow these rules: Rule No. 1: If it feels heavy or awkward, get help. Rule No. 2: Never carry heavy things from place to place. Rule No. 3: Use good lifting mechanics: • Assume a wide base (legs spaced with some distance) of support, equal weight on feet. • Tighten stomach muscles. • Bend your knees. • Use leg muscles. • Keep the load close to your body, straddle if possible. • Never jerk or swing the load. • Don’t twist or turn your body while lifting.
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Please do not hesitate to contact your physical therapist with any questions or concerns at 212.606.1368. We hope this information has been helpful. The healthcare team is here to answer your questions, and we encourage you to speak with us about any questions or concerns you may have.
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EMERGENCY CHECKLIST
CALL YOUR DOCTOR OR NURSE IMMEDIATELY IF ANY OF THE FOLLOWING OCCURS: • Sudden increase in pain • Fever • Redness, swelling, or drainage from the wound site
IMPORTANT PHONE NUMBERS Child’s Name HSS Doctor’s Name Number Pediatrician’s Name Number Pediatric Nurse Practitioner Emergency Contacts Name Number Name Number 27
Hospital for Special Surgery is an affiliate Weill Cornell Medical College. 535 East 70th Street New York, NY 10021 tel 212.606.1000 www.hss.edu