Orlando, Florida, resident Nikki Tanner has no memory of a day without head pain between 2006 and her surgery in late autumn of 2013. By the time she met neurosurgeon Dong Kim, MD, director of the Mischer Neuroscience Institute (MNI) at Memorial Hermann-Texas Medical Center, she’d spent nearly 10 years and thousands of dollars seeing one specialist after another with no conclusive diagnosis and no relief.
Her symptoms, which started with headaches and worsened over the years, included strabismus, gradual vision loss, blackouts, gait issues, hearing loss, memory lapses and “a feeling that my eyes were being pushed out of my head from behind.” After the headaches began in 2003, her first attempts at finding relief were consultations with an ENT, who found no abnormality in her sinuses despite recurrent sinus infections, and an allergist who found no allergies.
With no medical evidence of a cause for the headaches, she attributed them to her job as an instructor and manager of a nature center run by the City of Orlando. “I taught children four to six hours a day using a stage voice that required me to speak from my diaphragm,” says Tanner, who is 41. “When I left work every day with a headache, I assumed it was caused by the strain of my work.”
Later, convinced that a recessed chin, bruxism and a diagnosis of temporomandibular joint disorder were causing her headaches, she saw an oral maxillofacial surgeon who fitted her with upper and lower bite plates. In 2008, hoping for a miracle, she self-referred to a plastic surgeon and underwent a chin implant. But her symptoms continued to worsen.
In 2009, her primary care physician ordered an MRI; a few days later the doctor’s nurse called to say that there were no findings on the scan.
“By 2010, the nature center had closed and I accepted another position with the City of Orlando,” she says. “There was some improvement in my headaches after I stopped teaching, which supported my theory that the strain of using a stage voice was the cause. Then one day in early 2013 I noticed that my right eye was veering ever so slightly to the right.”
By May of that year, when the pain had become so severe that she could no longer concentrate on her work and began to have memory lapses, Tanner stopped work and went on short-term disability. A neurologist ordered an MRI, which revealed a 1.6-centimeter cyst in the pineal region of her brain. He referred her to a neurosurgeon, who requested the results of her 2009 MRI, originally read as negative. On the scan, he identified a much smaller cyst in the same location.
After three Florida neurosurgeons described the cyst as an incidental finding that could not be the cause of her symptoms, Tanner found Dr. Dong Kim through a friend in Houston. He is noted for his experience with brain tumors and cysts, as well as cerebral aneurysms and the treatment of trigeminal neuralgia.
“Dr. Kim reviewed the MRIs and agreed to see me but I was so discouraged by my experience with the three Florida neurosurgeons that I didn’t want to risk making the 17-hour drive to Houston only to be turned down by yet another neurosurgeon,” she says. “So I declined the appointment.”
Two months later, she was on long-term disability and bedridden on pain medications, when she saw a post on the Pineal Cyst Research Facebook page by a woman who had undergone surgery with Dr. Kim. “She spoke so highly of him, and I thought, ‘Wow! Was I ever wrong to turn down that appointment.’ Through Facebook, she wrote me that if pineal cysts are causing symptoms, Dr. Kim says they must come out. Those were the miracle words I wanted to hear.”
She arrived in Houston on Nov. 9, 2013, and saw Dr. Kim three days later. “When he walked into the exam room, I had my list of questions ready to go,” she says. “He touched my hand and said, ‘Where have you been, Nikki? I’ve been waiting for you for a while. I’m so sorry you had to suffer for so long, and I promise you’re going to be okay.’ His eyes said it all. He was confident but without any ego. The fact that he listened, believed me and told me he would operate on me was huge.”
Dr. Kim took Tanner to the OR on Nov. 13, 2013. He performed a bilateral suboccipital craniectomy and resected the benign pineal cyst, a technically challenging procedure because of its deep location and involvement of the brain stem and deep venous system. “Nikki tolerated the procedure very well, and when I saw her two weeks after the resection, she reported immediate relief of her symptoms,” he says. “Cases like hers, in which we can offer relief to people who have suffered pain for so long, are among our most rewarding as neurosurgeons.”
Tanner remains emotional about her experience. “Dr. Kim gave me my life back. I have no doubt about that. The hospital and his staff were over-the-top wonderful. After the surgery, they called me daily then weekly to check on me. In 10 years of doctor visits, I’ve never been treated with such respect.
“While brain surgery recovery is no walk in the park and it has steps forward and backwards, I am forever grateful that I had the surgery because it is unimaginable where I would be without it.”