Soon after the diagnosis of a brain or spinal cord tumor, parents meet with the pediatric neurosurgeon to discuss the surgery. The consultation is important because it provides the surgeon with background information about your child, including your family’s medical history. It is also important for the family because the surgeon will explain the procedure to you, answer questions, and address any concerns you have. Only an experienced, board-certified pediatric neurosurgeon is equipped to handle the intricacies of treating a pediatric brain or spinal cord tumor.
My son had several surgeries at different points in his treatment. Each time we had a long discussion with his surgeon to review the procedure and to talk about the possible complications. It made me feel scared when I thought about my little boy lying on an operating table being cut with a knife. Still, I’m glad that the surgeon was so thorough in explaining everything to us. I think that if I didn’t know what was going to happen, my imagination would have really given me a hard time.
The following is a list of questions you can ask before signing a consent form for surgery:
- What percentage of your practice is pediatrics?
- How many other children with this type of tumor have you operated on?
- What is the purpose of the surgery? What are the expected findings?
- What are the common and not-so-common deficits that my child might develop after surgery?
- Is this a new procedure? If so, how many other children have had it?
- How much of the tumor do you expect to remove?
- Where will the incision (cut) be?
- How large will the incision be?
- How much hair will be shaved?
- How long will the operation take?
Our son was admitted for surgery to have his tumor resected early on a Monday morning. The surgery took 5 hours. We stuck close by in a waiting room, although the hospital had beepers to call us if we wanted to leave the area. It was an unbearable wait, but we were given updates every hour or so.
- What are the possible complications of the surgery?
- What types of tubes will my child have after surgery (i.e., number of IV lines, nasogastric tube, catheter in bladder, drain, or shunt)?
- Will blood transfusions or blood products be required?
- Will my child remain on a ventilator (breathing tube) afterwards? For how long?
When my child had surgery, the doctor said that there was a possibility that he would need to stay on the ventilator for a few days. Thankfully, that never happened, and he came from the recovery room breathing completely on his own.
- How long will my child need to stay in the intensive care unit (ICU) after the surgery?
- How long will my child need to stay in the hospital after leaving the ICU?
- How much pain will my child have after the surgery? How will it be controlled?
- When will my child be able to eat?
- How long will it take my child to recover?
- Will I need to learn how to care for her operation site after she is discharged?
- How long do the stitches or staples stay in?
- What are the possible long-term effects of this procedure?
- Will the scar be very noticeable?
Our son’s surgery was at a major center. I hadn’t expected that the incision line that curved along the side of my son’s head would at first be raised like a fold, but eventually, the line thinned and flattened, then faded to white. It’s not indented or jagged-looking, and his hairline hides it pretty well.
Your child may undergo many tests before the operation, depending on the type of surgery and your child’s medical condition. This is usually called presurgical testing. Some of the tests that are frequently ordered are blood work, urinalysis, x-rays, electrocardiogram, echocardiogram, and pulmonary function tests. If computer-assisted surgery is planned, an MRI is done a few hours before the surgery. Your child’s surgeon should explain what tests are necessary.
It is important that the pre-operative preparation includes explaining the upcoming surgery to the child. Most large centers have a child psychologist, child life therapist, or nurse practitioner who can help you prepare your child for surgery. A simple, age-appropriate explanation can be given to the child during the pre-operative testing or, in some cases, just prior to surgery.
The psychologist on our team suggested that we think up age-appropriate, honest descriptions about what was going to happen. The idea was to give our 5-year-old son some vocabulary so he could think about his situation and maybe process things without being afraid of the unknown. The day before his surgery, we told him that he needed an operation. We explained, “An operation is where they open the skin to fix something. This time, they will be taking the tumor out. A special doctor will give you medicine that puts you to sleep, but it’s really more than sleep; while the medicine is working, you can’t feel anything. After the surgery, you’ll feel very sleepy. If you have a headache, a nurse will give you medicine to make it go away.” We reassured him that we would stay in the hospital with him, and we were clear about the whereabouts of each family member. “Mommy will be here when you wake up, but Daddy will sleep on the couch in the room with you.”
The older the child, the more detailed the explanation should be. However, follow your child’s lead and give brief but clear answers for each question. Then ask if there is anything else he would like to know. If you don’t know the answers, write down the questions and ask the surgeon or nurse practitioner at the next appointment. Make sure you and your child have all of your questions answered prior to surgery.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites