Inpatient
After selective dorsal rhizotomy (SDR), your child will spend approximately 24 hours in St. Louis Children's Hospital Post Anesthesia Care Unit and then be transferred to the hospital's Neurology/Neurosurgery floor.
When transported from the Post Anesthesia Care Unit to the Neurology/Neurosurgery floor the child will have an epidural catheter used for pain control, an intravenous line and possibly a catheter in the bladder. After waking from the anesthesia, he/she will be able to move their legs, but possibly not as well as before the operation. However, their legs will be less stiff than before surgery.
Department of Anesthesiology Pain Service will control and monitor the medication delivered through the epidural catheter. This will remain in place until the morning of the third post-operative day. Valium will be given intravenously for muscle spasms. Your child can be kept relatively pain-free through a continuous infusion of pain medication through the epidural catheter. Once the catheter is removed your child may have Tylenol with Codeine or Tylenol for pain relief.
Your child's face may appear somewhat puffy due to positioning during surgery, but the swelling will disappear in 24-48 hours. He/she will be positioned on the back or in a side-lying posture and will be turned from side to side every 4-6 hours. Children may take fluids and eat solid foods as tolerated.
Occasionally, children experience a headache several days after surgery. This can be medicated with an appropriate dose of Tylenol. Some children experience flexor spasms, which generally occur at night or while resting after a period of activity. These spasms are temporary and can be minimized with a small dose of Valium.
Your child will be restricted to bed rest until the third postoperative day. This time seems to go slowly for many families and children. Parents may want to think of play activities the child can enjoy in bed.
Some suggested suitable entertainment includes magnetic boards with letters and numbers or shapes to make pictures; hand puppets or small dolls for imaginary play; watercolor books; and magic markers for drawing and coloring. Many of these items are available from Children's Hospital Child Life Services, located on the eighth floor. Parents may bring the child's favorite videos. Each room on the Neurosurgery/Neurology floor is equipped with a DVD player.
Back care after surgery: There are no stitches to be removed from the skin. The child should be allowed activity as he/she can tolerate it. The main restrictions are related to trunk movement. No passive hyperextension or trunk rotation is permitted. The child is allowed to sit as tolerated; however, it is best to change position frequently during long periods of sitting.
Physical therapy during hospitalization: The child will be limited to strict bed rest until the third day after surgery. On the third postoperative day, the child will receive physical therapy twice, once at the bedside and once in the Therapy Services Department. Oral pain medication will be given 30 minutes prior to each therapy session. He/she will be allowed to sit up in the bed on the morning of the third postoperative day. If sitting in bed is well tolerated by the child, he/she will be transferred to a wheelchair.
Parents and family will be taught how to safely perform the bed to wheelchair transfers. Sitting in the wheelchair should be limited to 1 hour at a time. Undue soreness may occur if children sit too long in the wheelchair during the first several days after surgery. Support to maintain the trunk in good alignment is essential. Many movements, including gentle stretching, rolling, and mat activities are begun in the afternoon of post-op day 3 and continued and progressed on post-op day 4. Restrictions include vigorous hamstring stretching and passive trunk movements into the extremes of range. No restrictions are placed on movements initiated by the child.
During the hospitalization, the family is given a written home exercise program and is taught the correct method of performing the exercises. At discharge, a pre-op note, discharge letter, prescriptions for physical therapy, braces and equipment and a postoperative physical therapy protocol are given to the family to hand-carry to the child's local physical therapist. The family will also be given a prescription for returning to school and a letter releasing the child for airline travel if needed.
At home
The following gives an overview of what to expect during the patient's recuperation at home.
Fatigue: The child will tire easily for the first few weeks. During sitting or standing, the child may ask to lie down. Often, a 5- or 10-minute rest, lying on the side or flat on the back, will be all that is needed. The muscle weakness that was hidden by the spasticity is unmasked by the rhizotomy, and development of strength will take time. In addition, because of bed rest and limited activity for several days, it will take a while for normal strength and activity to return. For these reasons, the child should not return to school for 3-4 weeks after surgery.
Pain: Expect the child to complain of discomfort in the lower back for a couple of weeks, particularly when lifted or changing position. This can be alleviated by lifting with one hand under the child's legs or buttocks and the other around the trunk. The inpatient physical therapist will demonstrate this method. The child may also complain of pain if the feet dangle while sitting. A chair and toilet seat that support the feet are recommended.
Activity and play: Most children quickly resume sitting, crawling, and kneeling if these skills existed prior to surgery. However, even if the child was independently walking before surgery, it may take a few weeks before it is resumed, due to weakness and poor muscle control. The child will resume play activities common before surgery but may tire easily and need assistance to change positions. Encourage the child to be active on the floor, crawling, sitting, and playing. Consult with the home physical therapist if the child begins to stand or walk before these have been introduced as part of the physical therapy program.
Sleep: Some children experience disrupted sleep patterns. The child may wake frequently during the night and need to be assisted to change position or just to be reassured. This problem resolves once the child becomes more comfortable moving in bed.
Toilet use: Some children's toilet habits change. This may be due to normal swelling or healing in the area of nerves that go to the bladder. The child may ask frequently to be taken to the bathroom and then find toilet use is not necessary. The child may have toilet accidents because the extra time needed for assistance is not anticipated. Be patient. This resolves but can be frustrating both to the child and parents.
Sensory changes: Most children will have hypersensitivity on the bottoms of their feet. The child may complain of tingling, itching, or funny sensations. This can be alleviated by wearing shoes and socks. Standing is often more comfortable when AFOs are worn in addition to shoes. Place your hands firmly on the child's feet when dressing or bathing. Do not touch lightly or move your hands lightly over the skin. This problem usually resolves in the first few weeks.
Home program: At least for the first months, the child's agenda will revolve around the physical therapy program. Home programs are provided at the time of discharge from the hospital. Programs vary for each child, but all include positioning the child, range of motion to gain muscle length, strengthening, and developing reciprocal movement. A Children's Hospital therapist will give you specific activities and methods. Most of this program is learned during the preoperative physical therapy program and during the hospital stay. It is expected that parents will assist the child in the performance of a daily home exercise program in addition to attending outpatient physical therapy 4-5 times per week.
Recovery and progress: Encourage the child to be active, but respect that the child may tire easily. Daily progress is not always evident. Some days the child will be irritable, whiny, and weepy for no apparent reason. This is the normal recovery process. The nerves and muscles are learning new ways to move without spasticity. It takes time and repetition to produce consistent new movements.
Some days the child will be frustrated because movement is not the way it used to be and new ways to control muscles and movements have not yet been learned. The child will not understand how to make the "new body" work. An internalized image of a body without spasticity must be developed, and that takes time. Every child progresses at an individual pace, and learning new skills is followed by a plateau while those skills are practiced. The rewards are tremendous but the work is intense.
Various factors may cause setbacks or a leveling off of progress. When the child goes through a growth spurt, there will be increased difficulties. Being tired or under stress will affect the child's muscle coordination and movement patterns. Expect this; don't be overly concerned. However, if the child plateaus or regresses then does not improve in a week or two, discuss this with the home therapist. It may require a change of program frequency or a review of other activities in the program. If you have any concerns about your child's postoperative progress, please contact our office.
The possibility of future orthopaedic surgery. Some children may require orthopaedic surgery if there were fixed joint deformities or muscle contractures before surgery, or if they develop orthopaedic deformities that hinder motor functions. Muscle contracture problems can generally be managed through stretching, serial casting, or splinting, but sometimes require additional surgery.
Outpatient physical therapy. The St. Louis Children's Hospital treatment team works to achieve an outpatient-based physical therapy program for patients who have undergone SDR. This program emphasizes discharge of the child from the hospital as soon as acute postoperative care is complete and includes an intensive outpatient therapy program in coordination with the child's primary home therapist. The goals for the physical therapy program are:
- Developing alignment of pelvis, trunk, and head
- Increasing range of motion of the hips, legs, ankles, and feet
- Increasing strength in the trunk, pelvis, and legs
- Developing isolated movements of the legs as well as reciprocal movements
- Improving balance and alignment
- Developing the ability to move in and out of various positions
- Developing and improving walking
- Incorporating new patterns of moving into functional skills
- Developing smooth coordinated movement
Follow-up appointments
Post-op appointment at 4 months after surgery
- Dr. Roland and the rhizotomy team will examine the child 4 months after SDR. This appointment is mandatory for families residing in the United States and families are expected to return for that appointment. Patients/families may be asked to bring new hip x-rays.
- If the family doesn’t agree to or is unable to return for this post-op visit, the rhizotomy surgery will not be considered for the child.
- Prescriptions may be provided for patients up to one year following the last appointment at the Rhizotomy Clinic.
Follow up appointment one year after post-op appointment
- It may be beneficial to meet with Dr. Roland and the team one year or more after the 4 month post-op appointment.
- If the family, Dr. Roland and the rhizotomy team agree that a follow up visit in one year is not necessary, the patient and family will be counseled regarding follow-up by an orthopedist, rehabilitation physician, neurologist, or another doctor.
During each of these appointments, the child and family will meet with Dr. Roland and a physical therapist to discuss postoperative progress. This is also an opportunity for the child and family to ask questions regarding the type and frequency of PT, integration into community sports and activities, bracing and changes in assistive devices.
After each clinic appointment, medical records will be faxed to the child's primary care physician. The physical therapy report will be sent to the child's physical therapist.
Sending a videotape of the child’s motor function is not considered an adequate examination of the child and will not take the place of either a post-op or follow-up appointment at the Rhizotomy Clinic.
For more information on the cerebral palsy treatment team at St. Louis Children's Hospital, call us at 314.454.KIDS (5437) or 800.678.KIDS (5437) or email us to request an appointment.
