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:
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?
One family shares some great tips on how they made their decision:
[We] wanted to find a surgeon that satisfied “the three T’s”: track record, team, and trust. Meaning:
Track record. The surgeon should have lots of experience specifically with functional hemispherectomy, especially in malformations of the cortex. Hemimegalencephaly is one of the most difficult hemispherectomies because the anatomy of the brain can change so much from the regular brain, so evidence of experience in this specific context is important.
Team. No surgeon operates on their own. The neurologist, nurses, radiologist, epileptologists, therapists, and even the receptionist all work together to achieve a standard of care. We wanted to see evidence that they function together as a tight-knit team and would have a high standard of care throughout – not just individuals.
Trust. This is a bit softer – but [we] wanted to see that the surgeon and neurologist explained things in terms [we] understood and trusted; were they reflective? Did they listen? Were they looking at [our child] as an individual, not just a generic case of HME?
HOSPITAL #1 [The neurosurgeon] suggested an anatomical hemispherectomy. When I asked him how many he’d done, he said “lots”. His results? “Good”. He was eliminated on track record (he doesn’t have a strong one in this specific procedure) and trust (he didn’t answer my questions fully).
HOSPITAL #2: We met with [the neurologist.] He’s an expert.
HOSPITAL #3. [The neurologist] was attentive to [our daughter] and met with us for hours to explain what we needed. However, [the hospital] failed on team and track record – [the surgeon] … was not a cohesive unit with [the neurologist].
HOSPITAL #4. Top team. [The neurosurgeon] came to meet with us during a surgery. I could easily see us doing surgery here. Would be a 2nd choice but for location.
Ultimately we went with HOSPITAL #5.
Track Record: [The neurosurgeon] not only told us but published a paper with his track record. And his outcomes are quite good – 80-90% seizure freedom quite a bit better than usual.
Trust: They took time to explain everything to us, in detail, with every question. [The neurosurgeon] and [the neurologist] always referred to evidence [about our daughter[ when explaining something – for example, citing her EEG or the imaging in her MRI rather than just saying, “this is what we do for HME”. He was empathetic with the desire to save her motor function but ultimately told us his judgment.
Team: [The neurologist], the nurses, radiology, epilepsy, therapists, all fantastic.