Silent Tumor, Awake Brain Surgery: Kinsey White’s Courageous Battle Beyond Migraines

Kinsey White lived with pain in her head and body for as long as she can remember. The 32-year-old Oklahoma mother had migraines since she was a child, and deep down, she knew something was wrong. She wasn’t expecting that her headaches would lead her to discover a more serious condition completely unrelated to her constant migraines.

“Somehow or another, I've managed to go my whole life without getting an MRI,” Kinsey said. “Finally, last year, I got a referral to a pain management doctor, and he asked me to get an MRI or a CAT scan.”

At age 31, Kinsey’s life was about to change in ways she never imagined. Her headaches were her top concern, but the MRI she received showed something suspicious in her brain—something her doctors told her was likely a tumor.

“I was being told that something else was found on my brain in the MRI. Weirdly, I wasn’t that concerned,” she said. “I asked to go to OU Health, because my grandmother always went to OU Health. She had brain tumors all her life that were not malignant, and she always went to OU Health to get them removed. I figured it was something like what she had.”

In March 2023, Kinsey met OU Health neurosurgeon Christopher Graffeo, M.D., M.S., assistant professor in the Department of Neurosurgery at The University of Oklahoma College of Medicine. Much to her surprise, Kinsey learned that the tumor in her brain was much more complex and dangerous.

“If you have headaches that don’t respond to routine, over-the-counter medications, physicians will frequently recommend an MRI,” said Dr. Graffeo. “Typically, they just show a normal brain, but every now and then, we find something more insidious—like in Kinsey’s case, where we found a low-grade glioma.”

The most dangerous glioma variant is known as glioblastoma, an aggressive and life-threatening malignant brain tumor. Although Kinsey had a low-grade glioma, it was in a tricky part of her brain—one of her key speech and language centers.

“I was a little bit scared when he told me, but oddly not that bad. I think I was a little bit in shock, but he explained everything so well to me, and that made it seem a lot better,” Kinsey said. “He immediately recommended the awake craniotomy surgery.”

A Complex Surgery

A glioma is a tumor originating in the glial cells of the brain or spinal cord that most commonly presents with headache, confusion, memory loss, speech problems or seizures. Kinsey was a particularly unusual case, as her tumor developed at the relatively young age of 35 and essentially without symptoms. Had it not been for the fortuitous timing of her MRI, the tumor likely would have reached a much larger size before being diagnosed.

“Everything moved pretty quickly after that, and the surgery appointment was set up for the beginning of May,” Kinsey said. “I didn't tell anybody about it until the night before my surgery because I was just processing it myself. Only my fiancé and family knew what was going on.”

Kinsey admits to feeling fearful about an awake operation, but Dr. Graffeo explained every step of the procedure, helping her become comfortable with the idea and understanding of the benefits.

“I thought it would be like a scary movie, and that I would hear a bone saw and all that,” she said. “But they put you to sleep when they cut the skin and skull. Dr. Graffeo’s confidence and the team’s confidence made me feel more confident myself.”

In order to achieve the best possible outcome for Kinsey, Dr. Graffeo knew he had to resect as much of the tumor as he could safely remove, but because the tumor was in the part of the brain dedicated to expressive speech and language, a precise and delicate strategy was required.

“In some brain areas, you can remove large tumors or even entire lobes without a meaningful impact on how patients function—most patients go back to work and to all their other activities once they’ve recovered from the initial operation, for example,” he said. “But Kinsey’s tumor was immediately adjacent to a special part of the brain that we call Broca’s area, which controls expressive speech, and an injury to that center can cause permanent deficits that have a tremendous impact on quality of life.”

Speech is different than motor or sensory function, in that it arises from a complex network of abstract and distributed functions, Because of that, physicians cannot reliably monitor language while a patient is under general anesthesia.

“If you really want to push the envelope with your resection while being absolutely certain that you aren’t going to hurt a patient’s speech during an operation like this, you have to wake them up and talk to them,” said Dr. Graffeo.

What is an Awake Craniotomy?

The term “awake craniotomy” or “awake brain surgery” refers to a procedure performed on the central nervous system in a patient who is alert and able to interact with the surgical team to provide real-time feedback on their neurological function. Although awake craniotomies have been used across a range of settings, the most common applications are the removal of tumors or seizure foci involving what neurosurgeons refer to as “eloquent cortex,” or those parts of brain that control speech, language, vision, sensation or motor function.

Although the idea of being awake for an operation is intimidating for almost anyone, the surgical team goes to great lengths to keep patients comfortable and at ease. Patients are sedated for the initial elements of the operation, such as opening the scalp, skull and lining of the brain. Numbing medicine is applied generously with a “scalp block” that prevents sharp pain during the procedure, and low doses of other medications to help minimize pain and maintain tranquility are administered throughout the procedure by the anesthesia team.

Once the brain itself is exposed, the sedation is lightened, and the testing begins. For most awake operations, neurosurgeons such as Dr. Graffeo begin by meticulously mapping out critical functional areas and tumor-involved regions. They achieve this by conducting tests, such as speech or vision assessments, while small electrical impulses are delivered to the surface of the brain This technique is a reliable way to identify which regions are and are not safe to operate in, while avoiding any sort of permanent harm.

Once a functional map has been established, the critical portion of the procedure begins, and the neurosurgeon uses that map to guide their resection—continuing to test the patient throughout, in order to avoid any risk of inadvertent injury during the procedure.

“There were two things about this surgery we found particularly interesting,” said Dr. Graffeo. “Not only was it a big surgery, but we used what we would call a minimally invasive craniotomy—the technical term for it is a ‘lateral supraorbital craniotomy, or LSO.’ This technique provides several angles-of-attack all via a single, versatile corridor. It’s one of my favorite techniques, as it truly minimizes the size of the scar, extent of muscle dissection, and size of the craniotomy, without limiting my ability to access many critical locations. For the right tumor, it’s especially well-suited to the awake setting, as those benefits also mean a faster and less uncomfortable experience for the patient.”

During Kinsey’s surgery, OU Health’s therapists like Tressie Stephens who specialize in awake craniotomies asked Kinsey questions and showed her words and pictures that helped Dr. Graffeo map out and monitor her critical language functions before and during the resection.

“At one point, the therapist showed me a bunny, and I said, ‘pineapple.’ She was like, ‘Stop!’ That was kind of funny,” Kinsey said. “I didn’t ever feel any discomfort, though at one point I did feel a little pressure. I told them immediately, because you are supposed to communicate, so they put me back under for a little while, and when I woke back up, it was gone.”

The surgery took 4 hours, and Dr. Graffeo and the team were able to remove more than 90 percent of the tumor. Kinsey underwent radiation and chemotherapy, which are recommended for most patients with low-grade glioma to reduce the risk of the tumor growing or recurring. Kinsey’s team includes radiation oncologists and Oklahoma’s only board-certified neuro-oncologists, recognized by the United Council for Neurologic Subspecialties, as well as physical therapists and other experts dedicated to the treatment of brain and spine tumors.

“Glioma is a challenging diagnosis, because it is an infiltrating tumor, which is to say that even if you remove everything that is visibly abnormal on the MRI, there is a degree of micro-metastatic disease present that is why these tumors have a risk of recurring after treatment,” said Dr. Graffeo. “The most difficult decision I make is not when to operate—it’s when to stop operating. Kinsey is the perfect example of a patient where this sort of clinical judgment is key.”

Dr. Graffeo said good evidence in the neurosurgical literature shows that although a maximal safe resection is ideal, the long-term benefit of getting that last 5-10% out is negligible, whereas the downside of a speech deficit can be devastating.

“Surgery is incredibly important as a front-line treatment, because we know that survival and recurrence rates are significantly better for patients when we are able to get at least 70-80% of the tumor removed on the initial operation, but you have to know when to push and when to hold back,” he said. “Kinsey left the hospital the day after surgery, went right back to doing the things she likes to do, and we succeeded in protecting her life and quality-of-life as much as possible. I don’t think you can ask for a better outcome than that.”.”

Kinsey was stunned at the technology offered at OU Health, and how easy the surgery was on her physical and mental health.

“I didn’t know this kind of technology was possible,” Kinsey said. “I thought they would have to cut my skull open, but Dr. Graffeo put a little hole in and put what looked like a tiny little spoon in my brain. It was invasive, but still so minimally invasive. I even got to keep my hair! I thought they would have to shave part of my head, but I woke up and my hair was still there.”

Removing the Tumor

After the surgery, Kinsey was back at work in two days and has not suffered pain or discomfort since. After a round of radiation, she was started on a pill-based chemotherapy protocol, that continues until this fall. When the treatment ends, she and her family are going on a beach vacation.

“It was like I've never had brain surgery. Dr. Graffeo did the most fantastic job that I could ever even ask for. He is the poster child for what we would expect for success,” Kinsey said. “It all happened so fast, and I was back at work like I had just taken a regular day off. I was very lucky to have Dr. Graffeo and his team, because usually once a person comes to a doctor and they find out that they have a tumor like mine, it's already too late. The fact we found it by accident is amazing.”

Kinsey had advice for other Oklahomans facing the same diagnosis, or preparing to undergo awake craniotomy surgery:

“Don’t be scared of it. It’s not as bad as you imagine it will be. The team made the whole thing so completely easy to go through, which is a funny thing to say about brain cancer. I couldn’t have asked for a better experience. My family and I had immediate confidence in Dr. Graffeo. My grandma will sing his praises till the day she dies. I will too.”

Learn more about the Brain and Spine Tumor program at OU Health Stephenson Cancer Center or call (855) 750-2273 to request an appointment or second opinion.