The Art of Treating Epilepsy
'The Value of the Surgery'
Stephanie Balderamos sits patiently with her mother and Aaden, her 2-year-old son.
She’s trying to be calm, but you can see her fidget as she waits for M. Scott Perry, M.D., an epileptologist and medical director of Neurology at Cook Children’s, to walk in the room.
As soon as Dr. Perry walks in the door, the anxiety that Stephanie’s been trying to hide melts away.
For a moment, this isn’t a doctor and patient family greeting each other, it’s old friends catching up. After all, Dr. Perry began caring for Aaden when he was only 4 days old and he has been with the family throughout his treatment for seizures as a result of tuberous sclerosis complex.
But then it’s time to get down to business.
“I find it easiest just to talk with you about what we went through in conference so you know what I told everybody when we came up with our decisions,” Dr. Perry tells Stephanie.
He is referring to a previous conference where a team of neurologists, a neurosurgeon, a neuroradiologist and more gathered to discuss a treatment plan for Aaden. Now it’s time to discuss the plan with Stephanie.
First, Dr. Perry covers familiar ground. He talks about Aaden’s history. In the conference with the Cook Children’s staff, and now in the room with Stephanie, Dr. Perry marvels at her ability to detect Aaden’s seizures. “It’s almost psychic the way she knows her child is about to have a seizure. She detects a slight difference in her little boy’s mood or a quick far-away look,” Dr. Perry said. “Stephanie is never wrong in detecting the seizures.”
“I’ve always been able to notice it, as soon as he started having seizures,” Stephanie said. “To be honest, I don’t know how I knew. I just know when he’s having one. It’s almost as if he looks at me like. ‘Hey mom something’s wrong.’ I can tell by the look on his face. He’s looking for someone to comfort him or grab him.”
After they go over his history, it’s time to look ahead at what’s next. David Donahue, M.D., a neurosurgeon at Cook Children’s, will perform a surgical procedure called stereo-EEG to pinpoint the location in Aaden’s brain that is causing his seizures.
“Aaden will undergo Stereo EEG placement,” Dr. Perry said. “The initial preoperative workup has localized his seizure onset to a region of the brain on the right side-most likely towards the back part, but he has a number of tubers and potentially epileptogenic areas within the region we’ve localized. We will use Stereo EEG to further hone the localization of seizure onset in hopes of limiting any potential resection to the smallest area possible. We will place a number of depth electrodes into the brain to map out the area of onset – the epileptogenic network. From that information, we will then propose a final epilepsy surgery option to the family.”
Dr. Perry carefully explains the procedure. They talk about the possible risks. For this procedure and where the placement is taking place, a loss of vision is the biggest concern if they have to take out brain tissue in the back, but they hope to avoid this with more precise mapping through Stereo-EEG.
Stephanie admits to being scared, but she also lets Dr. Perry know she believes in him and trusts him completely. They finish talking about the procedure. Dr. Perry asks Stephanie if she has any more questions. Then he examines Aaden briefly before telling the family goodbye.
Next up, Dr. Donahue walks into the room. The seasoned neurosurgeon has performed countless surgeries on children’s brains, but he knows this is never a moment that the patients’ families take for granted.
He tells Stephanie he understands she’s nervous. He goes over the details of the surgery. He explains the look of the electrodes that will be placed in Aaden’s brain (think piano wires). He lets her know that this is what’s best for Aaden as they look ahead to a resective surgery that will hopefully help control or even end the little boy’s seizures.
By the end of the meeting, you can see a different Stephanie. She’s still scared, but there is new found assurance and confidence of the people taking care of her little boy.
Dr. Perry sympathizes with Stephanie, but he is confident this is the best opportunity to help Aaden.
“Epilepsy surgery is an art – and the ‘value’ of the surgery, like art, is sometimes in the eyes of the beholder,” Dr. Perry said. “For example, seizure freedom is the goal of every surgery, but it can sometimes come with adverse functional consequences, like weakness or vision loss. Some consequences obviously outweigh the benefit of seizure reduction/freedom and make surgery a no-go, in others the functional consequences may be acceptable.
“The art is a discussion and decision making process between the epilepsy team, the family, and the patient to decide where the value lies. The surgery itself is an art – as there are multiple potential ways to do it – not just the technologies used (laser ablations, resection, neuromodulation, etc) but the way the technique is used, for example, approaching from different angles to avoid damage to normal brain. These different options all come with a variety of benefits/risks, each which must be weighed with the potential to achieve the end goal of seizure freedom with minimal adverse effects.”
Neurology Specialty Programs at Cook Children's
It's rare that a child is born with a disorder that can affect the brain, spinal cord, nervous system and muscular system. But when it happens, you can trust that Cook Children's neurosciences programs are among the best.
Cook Children's has brilliant health professionals who are committed to delivering superior quality patient- and family-focused care for infants, children, teens and young adults. Our programs also provide access to the latest treatments, therapies and research.
Our neurosciences team is known for their top minds, skilled treatment and commitment to seeking cures through research and advanced medical technology. Thanks to these efforts, we have earned the respect of our peers, and especially our patients and their families as one of the leading centers in the country for neurological specialties where your child is always top of mind. Click here to learn more.