July 15, 2018
In the spring of 2017, Kansas City native Jeff Williams – husband, father and marketing professional – began a battle for his life. When pain he had attributed to migraines instead revealed an aggressive brain tumor, the 51-year-old adopted a fighting spirit: "Whatever we have to do, let's get started," he says.
He never imagined that would include remaining awake during brain surgery.
When the tumor began to return following a surgery he'd had out of state, Jeff met with the region's only fellowship-trained neuro-oncologist, Michael Salacz, MD, of The University of Kansas Cancer Center, and neurosurgeon Roukoz Chamoun, MD, of The University of Kansas Health System.
"Dr. Chamoun asked, 'During your first surgery, were you awake?'" Jeff remembers. "I laughed out loud. I had never heard of such a thing, and I thought he was joking."
Innovation in neurosurgery
Far from a joke, an awake craniotomy is an advanced procedure in which the care team interacts with a conscious patient throughout the surgery, interpreting the patient's responses to questions to remove the maximum amount of tumor tissue with the least risk to the patient's abilities. It's a procedure the neurosciences team at The University of Kansas Health System performs often. Our specialized physicians focus on treatment for brain and spine conditions, offering expertise to use the latest techniques and technologies to achieve the best possible outcomes.
"The awake craniotomy is done when the surgical area is near vital regions of the brain that control movement and speech," says fellowship-trained neuro-anesthesiologist Erin Plaza, MD. "These areas are very special parts of the brain that have an impact on every function and quality of life. The best monitor we have of surgical success is a patient who is awake and participating in the procedure."
With the return of the tumor, Jeff had begun experiencing left-side numbness and facial twitches, suggesting the tumor was affecting his motor skills. Dr. Chamoun recommended an awake craniotomy to achieve the best possible outcome.
"I was not at all excited about this. Actually, that's a huge understatement," Jeff says. "But Dr. Plaza was incredible. She spent an hour talking with me about how this would work and what to expect. She went above and beyond in addressing my stress and increasing my comfort level with what I was about to do."
Before the surgery, Dr. Plaza numbed Jeff's scalp with local anesthetics. The brain itself has no pain receptors.
Another familiar face made an appearance during surgery. Jeff had recently seen neuropsychologist Caleb Pearson, PsyD, for an evaluation to secure long-term disability support. Dr. Pearson is one of the health system's three board-certified neuropsychologists who form the region's only team of its kind.
"When I opened my eyes, there was Caleb, 6 inches from my face," Jeff says. "That recognition was a saving grace, a calming factor. He began to talk about common things that helped me relax in a very uncommon situation."
Dr. Pearson's interactions with Jeff guided him through brain mapping to support Dr. Chamoun's surgical removal of tumor tissue without damaging healthy tissue.
Jeff hadn't expected it, but the procedure even invited a moment of laughter.
"At one point during the surgery, someone's cell phone rang," Jeff says. "Being the smart aleck I am, I said, 'Does someone want to grab that?' I never expected to be making a joke in the middle of my own brain surgery."
Nancy Sullivan, RN, clinical nurse coordinator, remembers a more serious comment Jeff made.
"He turned to me and smiled and said, 'Please tell my family right away that this is not nearly as terrifying as I thought it was going to be," Sullivan recalls. "It is profoundly comforting for patients and families to be able to communicate during surgery."
Support and awareness
Jeff attends brain tumor support group sessions coordinated by Sullivan and recommends that others in similar situations do the same.
"I give huge credit to the support groups," he says. "It's so important to be able to connect with others who are walking in your shoes, who share the same concerns and fears."
He hopes those fears no longer include awake craniotomy.
"I want to share what I experienced in the hopes others won't decline this procedure out of fear," he says. "The potential benefits outweigh the risks. Making the choice to take an active role in my own surgery gave me some power in a situation where I've been pretty powerless. It gave me back some level of decision-making and control."
"I've always thought that fear comes from dark, scary places," he adds. "Shining a light on those fears takes their power away."
Jeff credits his care team for giving him strength and understanding to face the daunting procedure and discover the anticipation was more frightening than the reality.
"Dr. Pearson, Dr. Plaza, Nancy – they are part of the kindest, most compassionate team I could ever hope to work with," Jeff says. "The medical expertise here is without compare, but it's the human interaction, the way they show how much they care, that is truly off the charts."
We sincerely regret to report that Jeff passed away December 17, 2018. We so appreciate his courage and willingness to share his story in the hopes of educating others. Our thoughts are with his loved ones.
Patient testimonial: As with all treatments, individual patient results vary. It is important to discuss your treatment options with your healthcare provider.