Gracie's Surgery Q & A

We realize our friends and family may want to know more about Gracie’s surgery. Below are some questions we thought you may be interested in reading more about. Thanks for your continued support.

1. What kind of surgery is Gracie having?
Selective Dorsal Rhizotomy (SDR)

2. Why does Gracie need SDR surgery?
Gracie has cerebral palsy (CP), a common injury from extremely premature birth. For Gracie this includes damage to the area of her brain that controls her muscle tone and movement. This causes her spinal cord to dominate control of her muscles, rather than sharing control with her brain, and as a result, the muscle is too stiff, or "spastic." The spasticity primarily affects Gracie’s legs. We have treated her spasticity with limited success through physical therapy and bracing. Recently, we have also tried Botox therapy with some, though temporary, relief. SDR is an opportunity for permanent motor movement improvement.

3. What is SDR?
SDR (Selective Dorsal Rhizotomy) surgery takes about four hours and involves making an incision on her back, a portion of the bone from one or two vertebrates are removed and the sensory nerves of her spinal cord will be exposed. Then each sensory nerve will be tested electrically to determine if it contributes to spasticity. A percentage of those nerves that are causing spasticity will be cut. SDR has been tested more thoroughly than any other surgical procedure for the treatment of spasticity in children with CP. According to Dr. Park, the nation’s leading pediatric neurosurgeon specializing in SDR, it is the only surgical procedure that can provide permanent reduction of spasticity.

4. What are the benefits to SDR?
The benefit and sole purpose of SDR is to reduce spasticity which will make Gracie more comfortable and improve her motor movements that, we hope, will enable her to walk independently.

5. How do we feel about the surgery?
We are nervous, as any parents would be before their child undergoes surgery. However, we are also extremely excited about the benefits that SDR will provide Gracie. Before making the decision regarding the surgery, we attended a seminar dedicated to the various treatment options available to children with CP. At this seminar we discussed Gracie's situation with some of the doctors specializing in various therapies as well as families who have been through this process. This procedure, as well as Dr. Park, have been recommended to us by Gracie's neurologist, orthopedist and physical therapist. We are confident that this is the right surgery at the right time.

6. How are we preparing Gracie for the surgery and her recovery?
We are trying to prepare Gracie for surgery as best we can while not causing any fear, stress or anxiety. After talking to our friend and Child Life Specialist, Julie, we are reading a number of children's books about staying in the hospital and learning how the body works. We are playing with doctor's tools for familiarity and discussion. We'll view a 360 degree tour of the St. Louis Children's Hospital together as a family before we go. Gracie has already watched a short film that showed a little girl going to St. Louis Children's Hospital for surgery.

7. What will Gracie experience immediately after the surgery?
Gracie will be sedated and given pain medicine up until the first day or two after surgery. She will be restricted to her bed until the third day, at which time she will begin bedside physical therapy. Therapy will gradually increase and intensify until the time of her discharge, the sixth day after surgery. While there will not be any stitches in her back, discomfort is expected in her lower back for a couple of weeks. Other possible side effects are fatigue, headaches, inconsistent toilet habits, sensory changes and restless or interrupted sleep.

8. What do we expect after the surgery?
The initial stage of recovery is approximately one month. During this time, Gracie may appear weaker than before surgery and will require a wheelchair to get around. Strength will improve steadily with physical therapy that she will begin at Vanderbilt as soon as she returns home. She will receive therapy five times per week for approximately six months.

9. How will Dr. Park follow-up with Gracie's progress?
There will be two follow-up appointments in St. Louis, one at four months after surgery and another one year after her surgery.

10. What dates will we be in St. Louis?
Friday, May 3 - Sunday, May 11

11. Where will we stay?
The Parkway Hotel in St. Louis, adjacent to the hospital

12. Where is the hospital?
Center for Cerebral Palsy Spasticity
St. Louis Children's Hospital
Suite 4 E
One Children's Place
St. Louis, MO 63110 USA
Phone: 314.454.2813 or toll-free 800.416.9956

13. How will we travel?
So that we will be more in control of our trip and Gracie's comfort, we have decided to drive to St. Louis.

14. Why will we be in St. Louis for 9 days?
We are going up two days early to enjoy some time with Gracie before her surgery, like visiting the St. Louis Zoo. She will be seen on Monday, May 5 for a consultation with Dr. Park and his team. We will also tour the center and meet with a Child Life Specialist on this day. The surgery is scheduled for Tuesday, May 6. She should be discharged the following Sunday on May 11.