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If you are interested in a consultation at the International Center for Limb Lengthening, you need to call and schedule an appointment with one of the Center's orthopedic surgeons. If you are uncertain whether your medical problem can be treated at the International Center for Limb Lengthening, you can e-mail questions and x-ray images to our Consultation address ICLL@lifebridgehealth.org. If you have made an appointment to be seen at the International Center for Limb Lengthening, please adjust your schedule to leave ample time for your visit. Because of our customized approach to each problem and the complexity of the problems we treat, the waiting period may be unpredictable despite our best efforts to respect your time. Most patients require special x-rays be taken at the time of consultation. You are encouraged to bring what previous diagnostic studies and reports you have. During the consultation, you will first be evaluated by our nurse practitioner, physician assistant, or clinical fellow who will obtain your history and send you for any necessary x-rays. You will then be seen by the orthopaedic surgeon with whom you have made an appointment. After a detailed physical examination and study of the x-rays, a discussion will ensue regarding our recommended best course of treatment. If surgical treatment is considered to be appropriate, our staff members, including a surgeon, will discuss all aspects of the procedure with you. After the consultation, a medical report will be prepared and can be mailed to you and any other health care personnel you choose at your request. You are also encouraged to discuss the options with your referring physician, family, and friends before making any decisions. Large limb length discrepancies or multi-segment lengthenings for stature may require more than one lengthening procedure. Some patients require additional surgery before or after the lengthening to address associated problems, such as joint contractures, instability, and deformities. In such cases, the strategy for reconstruction and lengthening surgery is outlined and organized in a way in which patients and their families can plan in advance to minimize the inconvenience of these operations.
Once you have decided to proceed with surgery, you should call your insurance carrier to check your benefits for surgery and physical therapy. For a surgical appointment, please call 410-601-8700 or 800-221-8425 to arrange a surgery date. Our staff will assist you with insurance pre-approval. Physical therapy is an important part of our postoperative treatment, and it is important that you find out about the physical therapy benefits provided by your insurance plan. On-site physical therapy is available for children through the Kennedy Krieger Limb Lengthening Rehabilitation Program and for adults through our own supervised International Center for Limb Lengthening physical therapy program.
Before your surgery date, you will receive written instructions regarding when to come in for your final preoperative workup. It is required that a current medical history be obtained and physical examination be performed for each patient before surgery. These can be completed by your own primary care physician or at the International Center for Limb Lengthening. Depending on your age and health status, other tests such as blood tests, electrocardiography (EKG), and radiography of the chest (chest x-ray) may be required during the workup. For certain types of surgery, blood transfusions may be necessary. Patients may elect autologous blood donation (donating their own blood) or directed donation (having blood donated on their behalf). Our nursing staff can help you to organize this and can provide additional advice. There is a blood storage fee associated with these options, and insurance companies may not cover these costs. As part of the preoperative visit, informed consent will be obtained and questions regarding the surgery will be answered. You will also have an opportunity to meet with an anesthesiologist before undergoing your surgery. Additional x-rays and/or tests may be required at this visit.
For lengthening and deformity correction, the bone is usually cut through a very small incision to minimize injury to tissue. After surgery, most patients remain in the hospital for 1 to 3 days. A more complex procedure may require a longer inpatient hospital stay. Our physical therapists initiate rehabilitation sessions the day after surgery. Occupational therapists prepare special splints to support the hand or foot during treatment. Before discharge, all patients are taught to transfer from bed to chair to toilet and to walk using crutches or a walker, if allowed. During your inpatient stay, our nursing staff will teach you how to adjust your device to accomplish the necessary corrections of deformity or length. You will also be taught how to care for pin sites in cases of external fixation.
Lengthening usually begins a few days or a week after surgery. With external fixation, this is done either manually or by means of motors. The manual turns are performed by you. The motors run automatically but can be turned on or shut down manually. With implantable lengthening devices, the lengthening is performed either by small twists or pressure on the leg or by means of radiofrequency control. Because bone is a living substance, when the bone ends are gradually distracted (pulled apart), new bone grows between the bone ends. The lengthening rate is usually 1 mm per day but may be slower or faster depending on the tolerance of the bone and soft tissues to the distraction process. Most patients experience little pain during the day. Aching or difficulty sleeping at night is not unusual but is well controlled with medications as needed. This varies from patient to patient according to individual pain tolerance and the type of treatment being performed. Physical therapy is required on an outpatient basis in all cases during the distraction phase. These sessions are designed to stretch muscles to help them to grow and to maintain joint flexibility. In most cases, we allow partial or complete weight bearing as tolerated. Weight bearing actually stimulates the bone to grow, much in the same way stretching stimulates muscles and other soft tissues to grow. Most patients are allowed to shower and even to swim during the lengthening process, even with an external fixator in place. During the distraction phase, you need to be examined at our Center and x-rays need to be obtained every 2 to 3 weeks to evaluate bone growth, nerve and muscle function, and pin sites and to monitor for and avoid complications that can develop. The lengthening rate may be adjusted at these visits, and prescriptions can be refilled. Our staff is available by telephone and/or e-mail to answer questions; they are available 7 days, during on or off hours, for emergencies.
After the desired lengthening or deformity correction has been achieved, all adjustments to the lengthening device cease. Newly regenerated bone is weak at that point in time and would be unable to resist shortening or breakage without the continued support of the external or internal fixation device. When lengthening is performed with external fixation alone, the external device remains in place until the end of the consolidation phase. The average total external fixation treatment time for children is 1 month per centimeter and for adults can be as long as 2 months per centimeter. The longer treatment time for adults is the reason we prefer to use the lengthening over nails (LON) or fully implantable method in adults whenever possible. In the case of LON, the external fixator is removed at the end of the distraction phase by performing minor outpatient surgery in which the internal rod is connected to the bone at its sliding end. The external fixator can be removed because the bone is supported from the inside by the rod. Therefore, the external fixator is in place only for the distraction phase. The consolidation occurs with the rod alone. In the case of internal lengthening, the device stops automatically at the desired length and the rod or prosthesis supports the bone until it is fully hardened. Bone healing is judged based on the x-rays. X-rays show us how much calcium is in the bone. (Calcium appears white on radiographs; the whiter the bone is, the more calcium is present.) When there is sufficient calcium throughout the region where the bone was separated (regeneration zone), the bone is judged to be healed. The x-rays must be obtained approximately once per month to evaluate bone healing. For out-of-state patients, it may be possible to obtain x-rays locally and courier them overnight, eliminating the need to travel to Baltimore. Your surgeon will evaluate these x-rays and advise you by phone or e-mail regarding how much longer the external device needs to remain in place and whether there is any change in the amount of weight bearing that you are permitted or the amount of physical therapy that you require. For patients undergoing LON and for those with fully implantable self-lengthening devices, the amount of permitted weight bearing increases over time as the bone consolidates (hardens). For patients undergoing external fixation, the apparatus can be removed once sufficient bone healing is confirmed by radiography.
For patients who undergo treatment with external fixation alone, the apparatus can be removed with the patient awake or under anesthesia. Most patients prefer a general anesthetic. Removal of an external fixator is an outpatient procedure. After removal, many patients require a cast for a month of additional protection. Patients with internal fixation in place usually do not require a cast because the internal hardware protects the bone until it is fully hardened.