We continue to offer dorsal rhizotomy for adult patients on the basis of our accumulated experience with over 70 adult patients. To date, we have observed satisfactory functional gains in adult patients that are similar to those in children.
Our current opinion is that most patients with spastic diplegia should have spasticity reduced first through SDR before undergoing muscle release or tendon release procedures.
- The adult is able to ambulate independently, but spasticity limits energy, flexibility, walking speed and balance and sometimes causes pain/muscle spasms. The patient has history of delayed progression in motor development.
Essential Criteria for Adult Patients
- Between 19 and 50 years of age
- Diagnosis of spastic diplegia
- History of premature birth
- Currently ambulates independently without assistive device in all environments
- History of delayed motor development
- Good strength in trunk, hips and legs
- Relatively mild fixed orthopedic deformities
- Patients exhibit potential for functional gains after dorsal rhizotomy
- Patients exhibit motivation to attend intensive physical therapy and perform home exercise program
- BMI in "Healthy" range
- No significant medical problems
Postoperative inpatient care
Adults 25 years and younger will undergo selective dorsal rhizotomy (SDR) at St. Louis Children's Hospital and will follow their protocol. The adult patient over the age of 25 will undergo SDR at Barnes-Jewish Hospital. Approximately 24 hours will be spent in the Neurology/Neurosurgery Intensive Care Unit. The day following surgery, the patient will be moved to the ward.
Following surgery, for a period of 4 days the patient will have an epidural catheter used for pain control, an intravenous line in an arm and possibly a catheter in the bladder. Upon waking from the anesthesia, the patient will be able to move their legs, but possibly not as well as before the operation. Their legs may feel heavy and weak to the patient but should feel less stiff.
While in the Neurology/Neurosurgery Intensive Care Unit, pain medications will be infused through the epidural catheter. Valium will be given for muscle spasms.
The patient may begin taking fluids or solid foods by mouth as tolerated. The patient will be positioned on the back or in a side-lying posture and will be turned from side to side every 4-6 hours.
The face may appear swollen due to positioning during surgery, but the swelling will disappear in 24-48 hours. While in the neurology/neurosurgery unit, the patient can be kept relatively pain-free through a continuous infusion of pain medications through the epidural catheter. This infusion will be stopped on the morning of the third post-operative day and the catheter will be removed on the fourth post-operative day. At this point, Tylenol with codeine and oral valium will be given as needed.
Occasionally, a patient will experience a headache several days after surgery. This can be medicated with an appropriate dose of Tylenol. Some patients 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.
Bed rest is required until the third postoperative day.
Back care after surgery. There are no stitches to be removed from the skin. Patients are allowed activity as they can tolerate it. The main restrictions are related to trunk movement. No passive hyperextension or trunk rotation is permitted. Patients are allowed to sit as tolerated; however, it is best to change position frequently during long periods of sitting.
Physical therapy during hospitalization. The patient will be limited to strict bed rest until the third day after surgery. On the third postoperative day, the patient will receive physical therapy twice at the bedside and will be allowed to sit up in the bed. On the afternoon of post-op day 3, patients are assisted into a wheelchair for a maximum of 1 hour; support to keep the trunk straight is essential.
Many movements, including gentle stretching, rolling, and mat activities begin on the third postoperative day. Restrictions include vigorous hamstring stretching and passive trunk movements into the extremes of range. No restrictions are placed on the patient's own movements. At discharge, a report, a prescription for physical therapy, and a postoperative protocol will be given to the patient to hand-carry to the primary physical therapist.
Postoperative care at home
The following gives an overview of what to expect during the patient's recuperation at home.
Fatigue: The patient will tire easily for the first few weeks during sitting or standing. 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 patient should not return to school or work for 3-4 weeks after surgery.
Pain: Expect complaints of discomfort in the lower back for a couple of weeks, particularly when changing position. This can be alleviated by moving slowly and avoiding excessive trunk rotation, lateral flexion, and forward flexion. The inpatient physical therapist will demonstrate the correct way to move and transition between positions. The patient may also complain of pain if the feet dangle while sitting. Feet should be supported and not allowed to dangle. Patients will be given a prescription for Neurontin to prevent heightened sensitivities in the legs.
Activity: Most patients quickly resume sitting. However, it may take several weeks before independent walking is possible, due to weakness and poor muscle control. The patient will resume independent activities common before surgery but may tire easily and need assistance to change some positions. Consult with the physical therapist if the patient wishes to engage in an activity before it has been introduced as part of the physical therapy program.
Sleep: Some patients experience disrupted sleep patterns. Frequent waking during the night is common. This problem resolves once the patient becomes more comfortable moving in bed.
Toilet use: Some patients' toilet habits change. This may be due to normal swelling or healing in the area of nerves that go to the bladder. The patient may frequently feel the need to use the toilet and then find it is not necessary. Be patient. This resolves but can be frustrating to the patient.
Sensory changes: Most patients will have hypersensitivity on the bottoms of their feet. The patient may complain of tingling, itching, or funny sensations. This can be alleviated by wearing shoes and socks while standing. Place your hands firmly on the 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 patient'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 patient, but all include positioning, range of motion to gain muscle length, strengthening, and developing reciprocal movement. A 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 the patient will perform a daily home exercise program in addition to receiving regular physical therapy.
Recovery and progress: The patient should be encouraged to be active, but may tire easily. Daily progress is not always evident. 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.
The patient may 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. An internalized image of a body without spasticity must be developed, and that takes time. Every patient 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. Being tired or under stress will affect the patient's muscle coordination and movement patterns. Expect this; don't be overly concerned. However, if the patient 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 the postoperative progress, please contact our office.
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 patient from the hospital as soon as acute postoperative care is complete and includes an intensive outpatient therapy program in coordination with the patient'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
- Improving isolated movements of the legs as well as reciprocal movements
- Improving balance and alignment
- Improving the ability to move in and out of position
- Improving walking
- Incorporating new patterns of moving into functional skills
- Developing smooth coordinated movement
Post-op appointment at 4 months after surgery
- The Children's Hospital treatment team will examine the patient 4 months after discharge. This appointment is mandatory for patients residing in the United States and patients are expected to return for that appointment.
- If the patient doesn’t agree to or is unable to return for this post-op visit, the rhizotomy surgery will not be considered for the patient.
- Prescriptions will be given for patients up to one year following the last appointment at the Rhizotomy Clinic.
Follow up appointment one year after post-op appointment
- At the 4 month post-op appointment the patient will discuss with Dr. Park and the rhizotomy team whether another appointment is needed one year later.
- If the patient and Dr. Park and the rhizotomy team agree that that another visit in a year is not necessary, the patient will be counseled regarding follow-up by an orthopedist, rehabilitation physician, neurologist, or another doctor.
- If the patient or Dr. Park and the rhizotomy team feel that another appointment in one year would benefit the patient a return visit appointment will be made.
- During each of these appointments, the patient will meet with Dr. Park to discuss postoperative progress. This is also an opportunity for the patient to ask questions regarding the type and frequency of PT, integration into community sports and activities, bracing and changes in assistive devices.
At the post-op appointment, all patients will be asked to bring new hip x-rays. At both post-op and follow-up appointments the patient will see Dr. Park for examination, and will see a physical therapist for an evaluation, which will be videotaped. After each clinic appointment, Dr. Park's notes will be mailed to the patient's primary care physician and physical therapist. The physical therapy report will be mailed to the patient's physical therapist. The patient’s physical therapist will also be called to discuss the evaluation, progress, continued treatment, and recommendations for treatment, devices, bracing and more.
Sending a videotape of the patient’s motor function is not considered an adequate examination of the patient and will not take the place of either a post-op or follow-up appointment at the Rhizotomy Clinic.