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Questions to ask the surgeon

These questions were compiled by parents whose children with Sturge-Weber syndrome faced a hemispherectomy.  Some of these questions may not apply in your situation. Feel free to print this list of questions and take them to your Neurosurgery consultation appointment.

  • What makes my child a candidate for the surgery?

  • What would be an example of why my child wouldn't be a candidate for the surgery?

  • What is your experience with this procedure?

  • What is the procedure that is recommended? Anatomic, Functional, other? Why?

  • Are the excess blood vessels on the brain cause for concern during surgery?

  • What is the reason that this procedure is necessary at this time? Must the procedure be performed immediately?

  • What type/types of seizures has my child been having?

  • Has the healthy side of the brain assumed enough of the functions of the affected side to safely perform the surgery and expect to see developmental improvement?

  • What are the options if this procedure is not done?

  • What are the nonsurgical or medical treatments available to help the condition?

  • I’ve read that if many medications have been tried and failed to control seizures, there’s only a 5% chance any new medication will work. Is that true?

  • What will/might happen if the operation is not done?

  • If the operation is not done at this time, can it be done later?

  • What are the consequences if the procedure is postponed or delayed?

  • What is the anticipated outcome of the procedure?

  • What exactly are the expected or possible benefits of doing the procedure?

  • Will the surgery affect my child's hearing or eye sight?

  • Is there good reason to believe that surgery will significantly improve my child’s health and quality of life?

  • How likely is it that these benefits will result from the procedure?

  • What are the specific risks that this procedure involves?

  • What are the problems, complications, or conditions that are the risks of the procedure?

  • How common are these complications and potential adverse events?

  • If complications occur, how can they be treated?

  • How long is a typical hospital stay?

  • How many agree that this surgery is the best option for My child at this time?

  • What is the recovery process after this procedure?

  • Who will provide the rehabilitation therapy? How often?

  • Will pain control medications be necessary?

  • How long will it be until my child can resume normal activities?

  • If your child has a port-wine stain, ask: Should we hold off on laser treatments until after the surgery? When can we resume laser treatments after the surgery?

  • Where will you make the incision?

  • Have you done the rigorous tests on any other children who you didn't feel were candidates for the surgery?

  • What is the percentage of "candidates" you review that you feel would benefit from the hemi surgery versus the percentage of candidates you don't feel would be a candidate for the surgery?

  • Do you feel my child can make more developmental progress after a hemi surgery?

  • What things do you think my child will specifically make progress with after the surgery?

  • Understanding that all of your patients are different, can you give me an example of a patient who might be kind of similar to my child before the surgery and how the patient is after the surgery?

  • In your opinion, is the surgery being done just to control the seizures or do you feel my child will progress physically and mentally after the surgery?

  • How do you measure how the benefits of the surgery might outweigh the risks?

  • Can you explain to me the review process that this hospital goes through to decide which patients might be candidates for the surgery? Who is on the review board? What do they look for?

  • Have you done any hemi surgeries where afterwards you thought you didn't make the right decision and perhaps you should not have done the surgery?

  • Are there any children who were worse after the surgery than before the hemi surgery?

  • Are you sure there is no seizure activity on the healthy side of the brain?

  • What percentages of your patients who have had the surgery have seizures afterwards?

  • Based on what you know of my child and all the tests performed on him, how do you see him progressing developmentally if he doesn’t have this surgery?

  • My child has developmental delays. Do you think my child has a better chance of progressing if he has the surgery?
Questions to ask the surgeon