By Maureen Gilmer, IU Health senior journalist, firstname.lastname@example.org
She had the first seizure when she was a baby. At the time, doctors attributed it to a high fever.
It would be years before she suffered another, but at 8 years old, Addison Lynch was diagnosed with epilepsy.
By then, the seizures were occurring more frequently. Medications helped, but they couldn’t stop the seizures from happening. Upping the doses and adding more meds wasn’t a good long-term solution.
Now 16, Addison is eager to learn to drive, something she can’t do until her epilepsy is controlled. She longs for the freedom and independence that her friends have.
“Heart-wrenching” is how Lesley Watson describes the feeling of waiting and watching for her daughter’s seizures.
“For my peace of mind, Addison wears an Apple watch that has a seizure detection alarm,” Watson said.
The watch sends a text or calls the teen’s mom or dad, Derek, if it detects something amiss.
“I feel bad for her because I can’t relax, and she doesn’t get to stay home by herself very often. I still go in and check on her in the night even though she’s 16 because I’m so afraid she’s going to have a seizure during the night.”
So last year, Watson brought her daughter to Riley Hospital for Children to see epileptologist Dr. Lisa Smith. After consultation with neurosurgeon Dr. Jeffrey Raskin and others, the decision was made to try a surgical intervention.
READY FOR A ROAD TRIP
The night before surgery, Addison was ready, if a bit anxious.
“I’m a little nervous, but if it will help, then I’m down for it,” she said, adding she is most looking forward to getting her driver’s license and heading to Florida to visit her grandpa. “I want to be able to drive all the way to Florida.”
Her mom laughed at that response. “She went big. I thought she would say she wants to drive to work.”
On Wednesday morning, Dr. Raskin, surrounded by a team of health professionals, implanted a therapeutic device for epilepsy called a responsive neuro stimulator into his teenage patient. The RNS is basically a pacemaker for the brain.
Offering a big assist in this surgery was a new cranial robotic system that Riley is the first in the state to trial. About the size of a shoebox, the robot helps pinpoint where to implant the device, providing a roadmap of sorts to reach the intended brain targets.
“Instead of these sweeping incisions of the past and then big craniotomies and putting grids on top of the brain, what we’re doing now is actually creating a GPS system around the head and that is called stereotaxy,” Dr. Raskin said.
Stereotactic surgery is a minimally invasive form of surgical intervention that makes use of a three-dimensional coordinate system to locate small targets inside the body.
“Once we make a GPS system using this robot, we can achieve a trajectory through a 3-millimeter incision. So we place an electrode into the substance of the brain from the outside of the head and put it exactly where we want it,” he said.
The electrode attaches to a battery pack that lives inside the skull. It can then recognize patterns of activity and head off potential seizures.
“This is the pinnacle of neurological surgery, using a cranial robotic system to implant the newest generation of brain pacemaker,” the neurosurgeon said. “It’s as interesting as it gets.”
Riley has already done about 50 brain surgeries to treat epilepsy with help from a larger robot nicknamed ROSA (Robotic Stereotactic Assistance), and in fact is the only children’s hospital in the state to have a ROSA. But the new Autoguide cranial robotic device the hospital is trialing has a smaller footprint and is easier and faster to use, Dr. Raskin said.
LEADING THE WAY
This kind of surgery is done in just a handful of centers around the country, he added. Using the latest technology is what sets Riley apart, he said, adding that IU Health has a forward-thinking attitude, especially when it comes to the treatment of epilepsy.
Patients like Addison are expected to have shorter stays in the hospital, less blood loss and less pain with the minimally invasive approach to brain surgery.
Dr. Smith, Addison’s epilepsy doctor, said the advent of RNS opens a whole new way of treating patients who previously would only have the choice of more medications and/or a vagus nerve stimulator, both of which would be palliative for her seizures. (The vagus nerve extends from the brainstem through the neck and the thorax down to the abdomen.)
“While traditional resective epilepsy surgery (removing the part of the brain where the seizures are coming from) has also been a wonderful advancement in the treatment of intractable epilepsy, most of the time this is only for a specific subset of patients,” Dr. Smith said, adding it was not a good option for Addison.
“What this device offers is not only the chance for us to monitor the frequency of her seizures, but also to simultaneously treat them with this same device,” she said. “I am hopeful that this will be a huge step in the direction of gaining independence for Addison and allowing her to have an improved quality of life.”
Two days after surgery, Addison had already been able to get up and move around, talk and eat a little, her mom said Friday. She was expected to be discharged by the following day.
“I think after her having epilepsy and seizures for half of her life I’m ready for her to experience other things that she hasn’t been able to do,” Watson said. “It will be great for her, giving her a little independence from me so I’m not always hovering.”
The Fishers sophomore is a good student whom teachers love because she always comes to class ready to learn, her mom said.
“She loves art and music, she writes stories – she wants to be an author – and she loves animation.”
The stigmatizing and cognitive effects of the seizures and maxing out on medications to control those seizures take their toll, Dr. Raskin said. While nobody wants to go through brain surgery, he believes this procedure will be life-changing for Addison, allowing her to do all the things she dreams of doing.
But maybe save that drive to Florida until she gets a little more experience behind the wheel.
Photos submitted and by Mike Dickbernd, IU Health visual journalist, email@example.com