Carter Caldwell after his first of two brain surgeries, where monitoring devices were implanted in his brain.
Guest post from Carter Caldwell. Carter Caldwell is the Co-Investment Program Director at Penn Medicine.
I chose to attend the University of Pennsylvania for my undergrad for its excellence in education and innovation, having selected its brand-new major: Philosophy, Politics and Economics. At that time, I couldn’t have imagined the ways Penn would impact my life, and how many times I would continue to turn to Penn for its excellence for both personal and professional reasons.
I began having seizures without explanation in 2004 when I was 28, occurring multiple times a day. They couldn’t be controlled with medication, and nothing obvious appeared on brain scans. For years, I cycled through ever-changing combinations of medication with no relief. Multiple neurologists suggested that I should consider surgery, but without knowing the cause of the seizures, brain surgery was frightening and seemed premature.
In November 2014, after suffering from a decade of seizures, I was in Valley Forge Park with my family when I had a seizure and lost consciousness. I fell face-first down a rock hill, rolled to a horse path, down another hill, and finally to a stream. All the while, my 3-year-old looked on in horror. As a result of crashing face-first, I broke my face, fractured my right eye socket, and damaged one of the facial nerves. After two-and-a-half weeks in a local hospital and multiple facial surgeries, I was discharged with two metal plates under the skin on my face, and a plastic insert in the right orbital socket to hold my eye in place.
The impact of that seizure, and the fact that my son had to watch everything, finally convinced me to meet with a neurosurgeon. My neurologist John Pollard, MD, introduced me to Tim Lucas, MD, PhD, a neurosurgeon at Penn Medicine at the time. Because doctors had seen, but couldn’t identify, a visible abnormality they dubbed a “shadow,” I was referred to Kathryn Davis, MD, MTR, the medical director of the Epilepsy Monitoring Unit and Surgical Program. She introduced me to two clinical studies she was leading within the departments of Neurology and Neurosurgery at Penn Medicine, which used increasingly powerful brain scans. After unclear results from a series of 3T clinical MRIs, Dr. Davis held my hand as I entered Penn Medicine’s 7T MRI, the most powerful brain scan available at the time, to help identify the “shadow” as a lesion, tumor, or something else. The 7T MRI allowed us to better visualize this lesion, and suggested it was a slow-growing, benign brain tumor called a Dysembryoplastic Neuroepithelial Tumor (DNET), a lesion that is very amenable to successful epilepsy surgery. After all the research, Dr. Lucas and I decided together that the best path forward would be for surgery.
In August 2015, I arrived at the Hospital of the University of Pennsylvania for the first of two brain surgeries. Prior to the first surgery, I looked down at Irvine Auditorium from my hospital room and remembered walking in there 20 years earlier as a fearless, youthful, perfectly healthy undergrad. I never could have imagined that I would look up across the street and see my older self staring back while considering brain surgery — after having suffered from a decade of seizures that put me in hospitals from Mayo to Munich.
Carter Caldwell on the University of Pennsylvania Squash Team, 1997
The first surgery was performed to install intracranial electrodes. A monitoring rod was positioned in my brain’s right temporal lobe “shadow” and another in the left temporal lobe to monitor both sides of the brain simultaneously. This, we hoped, would help determine if the “shadow” was the origin of the seizures.
With some new hardware decorating my brain, I was connected to monitors to detect and evaluate seizures in real time in an effort to determine the origin of my seizures. But as I lay in the hospital bed waiting for a seizure, none came. The next step was to try to induce a seizure by introducing some triggers. For weeks, doctors tried to induce seizures by taking me off all medication, limiting sleep, and shining flashing lights. They even got me very drunk one night to try to induce a seizure. Eventually, I had three seizures and the monitors identified each as originating from the “shadow” in my right temporal lobe.
After two weeks in the hospital, nine months after the seizure at Valley Forge that left me seriously injured, and a decade after my seizures began, Dr. Lucas recommended removing the right temporal lobe of my brain, where they were originating. This option offered a 60 to 80 percent chance of seizure freedom. But, it also came with the fear of the unknown: how would my brain work with so much removed?
I had given up on seizure freedom long ago, modifying my life to accommodate them, such as living in Center City so I wouldn’t have to drive, and my wife always pushing our kids in the stroller down the sidewalk, so that I didn’t have a seizure and topple into traffic. I feared the potential for post-surgical brain damage, but I was also tired of living my life in fear. So, after almost a month in the hospital, I moved ahead with the second surgery.
Dr. Lucas removed my right temporal lobe, including the hippocampus, which plays a major role in learning and memory, and part of the amygdala, which processes fear. After removing the portions of the brain, we were able to confirm Dr. Davis’ suspicion of the “shadow” being a DNET.
After a few weeks of recovery, I began to get outside again — albeit with some restrictions.
Carter and Gilly Lane, the Men’s Squash Coach at the University of Pennsylvania, in 2017, two years after his brain surgery.
The three most significant concerns after brain surgery are facial recognition, word recall, and hand/eye coordination. Two weeks after I was discharged, I put these concerns to a test while attending a local conference. By the end of the week-long conference, I felt confident that I recognized everyone by name and had full word recall.
To test hand-eye coordination, I returned to the squash court. Squash has been a part of my identity since childhood, including playing Varsity while at Penn, and it was incredibly nerve-racking to see if I could still play like I had before undergoing a temporal lobectomy. However, after playing again post-surgery, my opponent said, “Carter, I think you’re playing as well as I’ve ever seen you play.”
Four years after my surgery, I returned to Penn, this time as an employee. I have a unique role in the Penn Center for Innovation where I support Penn Medicine faculty-driven spinout companies based on their innovations and discoveries, that will have a material impact on patients’ lives, further faculty research, and support the Philadelphia Cellicon Valley ecosystem. I’m in a position where I can help and give back to the same faculty whose excellence in research and training gave me a new lease on life.
While I still take anti-epileptic medicine, I just celebrated my six-year anniversary of being seizure free. I’m grateful to have been able to turn to Penn over and over again for its strong academics, its incredible research and providers, and now to play a role in advancing this groundbreaking research and care for others to benefit from.