Epilepsy surgery risks: How technology can help families make informed choices

Epilepsy surgery comes with risks and benefits for a child. Norton Children’s Neuroscience Institute uses technology to help families make more informed choices.

If your child has seizures that aren’t helped by medication, you may be considering surgery. Epilepsy surgery’s risks and benefits for a child are complicated and are better understood with as much information as possible.

To help with this task, pediatric neurosurgeon Ian S. Mutchnick, M.D. M.S., and the team at Norton Children’s Neuroscience Institute, affiliated with the UofL School of Medicine, are using the latest technology to give patients and their families the most complete picture possible — so they can make a decision that’s best for them.

At the Norton Children’s Neuroscience Institute Refractory Epilepsy Clinic, Dr. Mutchnick and the team use detailed, 3D images of the child’s brain to show where the epilepsy is being triggered and which brain functions could be hampered by surgery.

“Decision-making — good decision-making — is the very heart of the patient experience,” Dr. Mutchnick said. “Helping people understand what is at stake and allowing them to apply their own perspectives and values to a difficult decision is one of the most important things I do.”

Successful epilepsy surgery has to target the right area of the brain, the spot that is the source of the patient’s seizures.

Weighing epilepsy surgery risks and benefits

Brain surgery isn’t without its risks.

“Have we found the right target? If we remove that area of brain, hoping that seizures will be improved, what kinds of deficits might the child be left with?” Dr. Mutchnick said in broadly describing the considerations of risks and benefits. The level of risk depends on where in the brain the seizures begin.

“I want to do everything I can to help parents to clearly weigh the potential loss of neurological function with the potential for a meaningful reduction — or possible freedom from —seizures,” Dr. Mutchnick said.

Norton Children’s Neuroscience Institute has added the ability to view 3D images of your child’s brain in an augmented reality model. The Surgical Theater system allows neurosurgeons, neurologists, patients and families to see detailed and accurate information about a patient’s brain to get a greater understanding of their condition and any potential procedures. Norton Children’s Hospital is the first hospital in the region to use this technology.

The system pulls together analytical tools that previously were available only in research, but now can be used directly to help patients in preparation for surgery and during surgery. The 3D images are created by converting hundreds of 2D images into a detailed, high resolution and navigable picture of the brain.

The images allow for a much more intuitive understanding of the complicated relationships that are important to making good decisions in epilepsy.

“It’s an amazing tool,” Dr. Mutchnick said.

Planning for epilepsy surgery

At Norton Children’s Neuroscience Institute, the Refractory Epilepsy Clinic uses these 3D images as part of a detailed packet sent to families outlining the surgical plan and why the team has reached their conclusions about the patient’s epilepsy. The packet makes clear what to expect in surgery and why the particular surgery was chosen, and it carefully describes the potential risks and benefits.

“We want families to have all the time they need to read through the packet before they meet with me,” Dr. Mutchnick said.

The information is complicated, and parents need time to review it alone and with the neurosurgeon. Dr. Mutchnick views the decision-making process as a collaboration with patients and their families.

“While the Refractory Epilepsy Clinic team may have strong opinions about the benefits of the treatment we propose, these are most often elective surgeries. It is usually OK to decline to proceed and continue with medication.” Dr. Mutchnick said. “If they walk out of my office saying ‘no thank you,’ I respect that.”

Parents also can use the packet to get a second opinion. Dr. Mutchnick welcomes patients and families seeking the opinion of another epilepsy service.

Technology making more-informed choices about epilepsy surgery possible

Dr. Mutchnick has studied the science of decision-making and how people process complex and weighty issues before choosing a path.

Prior to medical school, Dr. Mutchnick spent two years studying decision-making at Stanford University in California. There, he worked with decision professionals who helped create the consultation planning process that has been pioneered for breast cancer patients at University of California San Francisco Medical Center as part of its patient decision services. The model has become increasingly popular.

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According to Dr. Mutchnick, patients typically leave a doctor’s appointment retaining about 30% of the information they heard. By giving families detailed and clear information before they come to the appointment, using the same information during the office appointment and then having them leave with notes, Dr. Mutchnick hopes their understanding is much greater.

“When you respect how important it is for families to bring their own values and understanding to the information, you come out with better decision-making,” Dr. Mutchnick said. “Sadly, you don’t get to pick an outcome. But you can approach a difficult decision with risky alternatives in a way that leaves you with a sense of peace and serenity.”

For epilepsy surgery at Norton Children’s Neuroscience Institute, the Surgical Theater technology has patients and their families’ see first-hand how epilepsy is affecting the brain and how it can be treated. This hands-on, visual experience is one way technology helps in the decision making process. When families come to his office to discuss the surgery, the child and family can put on virtual reality goggles and “fly” through a 3D, digital version of the patient’s brain, giving them a perspective impossible only a few years ago.

The Surgical Theater technology alsio allows surgeons to target epilepsy as never before, allowing the team to create an anatomically accurate plan for reducing or eliminating seizures. Norton Children’s neurosurgeons also can simulate a procedure and practice before ever stepping into the operating room.