Meeting with a pediatric epilepsy surgeon can feel overwhelming. You are being asked to consider a major decision, often after years of seizures and uncertainty. Having a written list of questions can help you slow things down, understand the plan, and leave the appointment feeling clearer about what’s being recommended and why.

The questions below are a starting point. You do not need to ask every single one. Pick the questions that matter most to your child’s situation, your biggest worries, and the decision you’re trying to make.

A note about medical language

Neurosurgery comes with a lot of unfamiliar terms, acronyms, and fast explanations. It’s normal to feel lost, even if you’re paying close attention. It is completely OK to stop the conversation and say, “Can you explain that in plain language?” or “Can you walk me through that again?”

You may need to hear the same explanation more than once, and that doesn’t mean you’re failing. It means you’re doing what a parent should do when the stakes are high. Don’t be embarrassed.

If something doesn’t make sense, keep asking until it does.

How to be reasonable with questions

It’s smart to come prepared, but it’s also okay to be selective. Appointments have time limits, and a long rapid-fire list can leave you with lots of partial answers and more stress. Instead:

• Choose your top 10–15 questions for the visit.
• Group them by topic (the surgery, risks, recovery, logistics, cost).
• Start with the biggest decision-makers: Why this surgery? Why now? What happens if we don’t? What are the realistic benefits and risks for my child?
• If you run out of time, ask: “What should we cover next time, and who can follow up with the rest of my questions?”

The following list of questions for the surgeon may help you with your decision.

The surgery

• How many epilepsy surgeries do you perform each year?
• What is the name of the surgery?
• What is your experience with performing this type of procedure?
• How long have you performed this procedure as lead surgeon?
• How many times have you performed this procedure?
• How long has this procedure been performed at this hospital?
• What part(s) of the brain will be removed or disconnected? What functions do these parts of the brain control? Are these parts involved in important brain circuits for, for example, speech, vision, or learning to read?
• Is there any scientific literature that you can show me to support the decision to operate?
• What are the alternatives to performing this surgery? Are there any treatment options that we have not explored?
• What will likely happen if we do not move forward with this surgery?
• May I speak to another family who has undergone this type of procedure at this hospital?
• What are the benefits of the surgery and how long will they last?
• Should I get a second opinion? Whom do you recommend?

Risks

• What are the risks and potential complications of having the surgery?
• Specifically, what are the short-term risks (those that occur during and shortly after the procedure such as stroke, infection, bone reabsorption, meningitis) and long-term functional risks (such as learning deficits, vision problems, physical impairments)?
• Will my child require a blood transfusion?
• What is the incidence of hydrocephalus after this procedure?

Recovery

• What can I expect during recovery? What are some warning signs?
• How long will we be in the hospital after surgery? Will we stay in PICU and then move to the neurology floor? What will determine when we move to the neurology floor?
• What kinds of supports will my child need immediately after surgery?
• Will my child be evaluated for physical therapy, occupational therapy, and speech therapy while in the hospital?
• Will my child require inpatient rehabilitation? What are the pros and cons to inpatient rehabilitation?

Logistics

• Where will the surgery take place?
• What kind of preparation will be required before the surgery? Will there be bloodwork and other tests or special skin preparations required?
• What kind of anesthesia will be administered and who will be the anesthesiologist?
• Is there a social worker or case manager I can ask for while in the hospital?

Cost

• What is the cost of the procedure? Specifically, what is the:
  • Surgeon’s fee
  • Hospital fee
  • Billing for other services (anesthesiologist, assisting physicians, other consultants)

Neuromodulation (VNS, RNS, DBS): special questions to ask

Neuromodulation uses an implanted device to send electrical stimulation to a nerve or a brain target to reduce seizures. These devices are not “one size fits all.” Where the leads go matters because the goal is to stimulate the specific nerve or brain circuit that is most likely to help your child’s seizure type and seizure network.

Placement and “why there”

• Which device are you recommending (VNS, RNS, or DBS), and why is it the best fit for my child?
• Where exactly will the leads go? Please show me on an image or diagram.
• Why are you choosing that location? What seizure pathway or brain network are you trying to influence?
• For RNS: What is the plan for the leads: on the brain surface (cortical strips) vs deeper (depth electrodes)? Why?
• For DBS: What brain target are you aiming for, and why that target for my child’s seizure pattern?
• For VNS: Which side of the neck nerve will be stimulated and why?

How you’ll know it’s working

• What does “success” look like for this device for my child (seizure reduction, severity, recovery time, fewer ER visits, quality of life)?
• How long does it usually take to see benefit?
• How will settings be adjusted over time, and how often are follow-up visits?

Risks and tradeoffs specific to neuromodulation

• What are the most common complications with this device (infection, lead movement, device issues)?
• What side effects should we watch for (voice changes/cough with VNS, mood/sleep changes, tingling, etc.)?
• What happens if it doesn’t help enough: can the leads be repositioned, can we switch strategies, or consider surgery later?

Practical details

• Where will the battery/device sit in the body, and what will the scar/incision sites be?
• What are activity restrictions after implant, and for how long?
• What about MRIs: will my child still be able to get them, and under what conditions?
• How long does the battery last and what does replacement involve?