More About Our Experience with Deep Brain Stimulation
This is the second post in a series about deep brain stimulation (DBS) for Carson and Chase*.
The decision to try DBS wasn't a hard one for me. I am determined to find any way possible to help the boys move better and be more comfortable in their bodies. If technology can help them I want to try and incorporate it into our lives. I had to convince my wife Nikki, which took some doing, but after meeting with Dr. Sanger again at Children's Hospital Orange County (CHOC) in August 2021 and hearing that the boys would be good candidates for the procedure, she agreed that we should move forward.
Unlike other DBS procedures for children with movement disorders, the CHOC team has a two-step process. There is a testing phase with 12 temporary wires to determine which areas of the brain respond best to the stimulation, and a second procedure to place the four permanent wires. Typically DBS involves only placing two permanent wires, but Dr. Sanger uses four wires and two neurostimulators, which can help patients to have better outcomes. The batteries that power the stimulators are implanted in a third surgery. They have done this unique procedure on about 40 children with movement disorders so far, and seen improvements in almost every patient. They also continue to refine and improve the process as they go.
The first surgery happened in January 2022. Carson had 12 temporary wires surgically placed into different areas of his brain. These were connected to neurostimulators that would send electrical current through them to test different levels of stimulation. The ultimate aim for DBS is to find optimal stimulation settings that will override abnormal signals that his brain sends to his muscles and interfere with proper movement. This is personalized medicine. The settings are different for every patient, and it's not always clear which areas of the brain will respond.
The 12 wires in Carson's brain were connected directly to a stimulation device and computer server. Small bluetooth devices were also secured to his body to monitor the activation of muscle groups in his trunk, arms, and legs during testing. All of the data generated during stimulation and testing was recorded and saved onto a computer hard drive that recorded all his brain and muscle activity during our stay. I believe they generated at least a terabyte of data, which is comparable to storing about 500 hours of HD video or 6.5 million pages of documents.
We spent a almost a week in the neuromodulation unit at CHOC. Nikki and I tag-teamed, each taking a shift of several days sleeping in Carson's hospital room. He was monitored 24/7 by video camera, and we also had an attendant in the room at all times with us. Several hours each day, a team of nearly 10 doctors and engineers experimented with different combinations of stimulation while Carson was doing things that he would normally do - eating, sitting, walking, etc. I won't get into the specifics of all the testing (photos we share will tell the story better), but at one point we were helping Carson take steps down the hallway with a long tail of 12 wires hooked to the computer(s) on rolling wheels, trailed by a team of six people. It was grueling for him and us.
Towards the end of the week the team consulted with us and shared recommendations on where to place the four permanent wires. Two wires were to be placed in the globus pallidus internus (GPi) and two in the pedunculopontine nucleus (PPN). As far as we know, Carson is the only child to have wires placed in the PPN, so we are helping to advance the understanding of brain stimulation in that area. He had the permanent wires placed in February 2022. We'll share more about Chase's experience, the follow-up programming visits, and the adjustments we've been doing at home to optimize their stimulation settings in the next posts*
*While DBS is a viable treatment option for patients and families to consider, it is not part of the MEPAN Foundation research agenda. No donations to our organization went towards these procedures, which were approved and paid for through our health insurance provider.