The Art of Treating Epilepsy: Discussing Potential Surgical Options
The art of the deal between parents and the Neurology team
Stephanie Balderamos doesn’t regret the surgeries that await her 2-year-old son, but she’s also not quite ready to think about them either.
After all, Balderamos watched the doctors at Cook Children’s try every other treatment option available for her son, Aaden, before deciding that surgery was the correct choice.
Aaden was diagnosed with tuberous sclerosis complex (TSC) at 4 days old. TSC is a genetic disorder that causes benign, or nonmalignant, tumors to form in many different organs in the body. The brain, heart, kidneys, skin, lungs and eyes are some of the more critical locations where these tumors appear. When tumors form in the brain they can cause seizures, developmental delays, intellectual and mental disorders. TSC is also considered a leading cause of medically-intractable epilepsy and autism.
At 4 months old, Stephanie captured on video Aaden’s first focal seizure. She sent the video to Aaden’s neurologist Scott Perry, M.D., an epileptologist and medical director of Neurology at Cook Children’s. The next day Aaden started on a medication to treat those seizures. After a week, that seizure type stopped, but more would soon arise.
Four months later, infantile spasms started and they have continued in some form to this day – intractable to every therapy Dr. Perry has prescribed.
Aaden has tried several medications for his seizures and at times he reacted poorly to the medication. Dr. Perry talked to Stephanie about surgery early on, but she asked for other options.
Dr. Perry placed Aaden in a research trial of cannabidiol (CBD) oil for seizures in TSC. While he had seen success for other patients, the trial was not a success for Aaden and he needed other treatment options.
Like many with TSC, Aaden’s epilepsy has been intractable to therapy. The tumors in Aaden’s brain cause between eight to 10 seizures on average per day. Treatments thus far haven’t achieved the results that both Dr. Perry and Aaden’s mom had hoped.
“Intractable epilepsy, or the failure to achieve seizure freedom after trials of two appropriate chosen and dosed antiepileptic drugs, has profound impact on quality of life, psychosocial function, cognitive function, and mortality risk,” Dr. Perry said.
For these patients, surgical therapy, consisting of localization and subsequent resection/ablation of the epileptogenic zone can result in favorable seizure reduction and for many, seizure freedom. Among patients with intractable epilepsy, an estimated 5-50 percent may be candidates for epilepsy surgery.
"The decision to perform epilepsy surgery as treatment is a difficult process,” Dr. Perry said. “First we have to make sure we know exactly where in the brain the seizures are coming from, then we need to know the function of the part of the brain we plan to operate on. The goal is to make the seizures stop while avoiding an injury that would hurt the child’s speech, cause weakness, or cause loss of sensation.”
Aaden’s treatment has been a series of a couple of steps forward and then three more back. Now surgery remains the next option. David Donahue, M.D., a neurosurgeon at Cook Children’s, will operate on Aaden at some point in the near future in hopes to control Aaden’s seizures better, but a lot of work has to be done before he is ready for the operating room.
“I wanted to try other options before, surgery,” Stephanie said. “I was scared to think of surgery. I wanted to see if anything else could work. Sometimes I regret not doing the surgery earlier. But then I think, well at least I tried everything else before making that decision.”
Stephanie says she won’t allow herself to think about the surgery yet, but that’s just so she can continue with her daily life. She is the mother of Aaden and his older brother Eli, who is 8.
“When I think about the details of the surgery, it makes me sick to my stomach. I haven’t thought about it much,” Stephanie said. “When it pops into my mind, I push it to the side. That’s the way I handle it. I get really nervous. I will think about it about two days prior to the surgery when I have to get everything together.”
For more on this topic:
- The Art of Treating Epilepsy: Diagnosis and Treatment
- The Art of Treating Epilepsy: The Team Behind Aaden's Care
- Comprehensive Epilepsy Program
- Meet our Neurosciences Team
- Choosing Our Neurosciences Center
Epilepsy Surgery Center
The Cook Children's Epilepsy Surgery Clinic is available to serve children who are candidates for epilepsy surgery or who have undergone epilepsy surgery. In this clinic, the family has an opportunity to meet with members of our Comprehensive Epilepsy Program, including their epileptologist, neurosurgeon, neuropsychologist and epilepsy coordinator prior to and after surgery. The clinic team meets on the second and fourth Mondays of the month from 9 a.m. to noon.
When a child with a neurological disorder requires surgery, the experts at Cook Children's Medical Center offer comprehensive care and state-of-the-art technology.
With the help of such state-of-the-art equipment as the revolutionary intraoperative MRI (iMRI), our neurosurgeons are able to determine effectiveness of surgical procedures for cranial and spinal nerve disorders and tailor the treatment to each child's unique needs.