Making the decision of whether your child should have brain surgery to stop seizures can be a difficult one. Realistically, there are three tiers of decisions that need to be made:
- Choosing to have surgery;
- Choosing the exact procedure; and,
- Choosing the surgeon.
Choosing Whether To Have Surgery
Whether to have surgery requires careful consideration of several factors:
Does your child have a condition which is known to be drug resistant, like Rasmussen’s encephalitis?
Has your child failed two appropriate anti-epileptic drugs?
Remember that the chances of a third drug stopping your child’s seizures drops to almost zero percent.
Is your child’s development regressing or has his/her development stopped?
Take some time to review the dangers of drug-resistant seizures. Understanding what seizures will likely do to your child is extremely important.
Choosing The Procedure
Have you reviewed the various procedures, their seizure control rates, and associated short- and long-term risks with your surgeon?
If the surgeon has published research on seizure outcomes related to the procedure he/she recommends:
Has he/she shared that research with you? Is the research current? Since the date of publication have the seizure control rates changed? Are the seizure control rates specific to your child’s condition?
Is the procedure the surgeon is suggesting common or rare?
Are you risking the chances of seizure freedom by trying to preserve too much function?
What does magnetic resonance imaging reveal? Where are the areas of malformation?
What does the EEG reveal? Are seizures coming from focal areas or all over one side of the brain?
Choosing The Surgeon
Is your choice limited by the type of insurance you have? This is important to understand. Your insurance carrier, or government-funded insurance program, may not allow you to select another surgeon.
Is your surgeon’s approach more conservative (remove/disconnect less brain matter) or aggressive (remove/disconnect more brain matter)? Is this the right approach for your child?
Has he/she discussed with you the risk of resecting too little? If the surgeon misses an area that should be resected, it may leave seizure focal points in place.
Has he/she discussed with you the risk of resecting too much? Will your child lose more function than is necessary to stop the seizures?
Has the surgeon discussed the short- and long-term medical complications that may arise from surgery?
Making the Epilepsy Surgery Decision
“Let’s Talk About Epilepsy Surgery” is our awareness campaign about pediatric epilepsy surgery. In this last webinar in our series, Dr. George Ibrahim, a pediatric neurosurgeon at The Hospital for Sick Kids in Toronto Canada discusses one framework to help parents with the decision-making process. Dr. Ibrahim’s research interests include ethical issues around pediatric epilepsy surgery. Using the example of making the decision between resecting “eloquent cortex” v. implanting a responsive neurostimulation device, Dr. Ibrahim introduces us to a five-step, value-based decision-making framework. By breaking down the complex decision into smaller pieces, it’s easier to pave the way to the final decision. He makes clear that the first step in the decision-making process is an understanding of all available treatment options – this requires a comprehensive epilepsy surgery evaluation at an experienced facility.