A reason to smile
At age 32, Jordyn Spann – a wife and mother of four – learned she had a brain tumor. Her mission to find the best surgeons led her to Vanderbilt and a 16-hour surgery that removed her acoustic neuroma and returned her to family life.
share this story
Jordyn Spann’s kids were 1, 3, 5 and 7. It was summer, and family was coming for the Fourth of July. Life was busy and full.
That made it easy to dismiss one of the earliest symptoms -- it was probably just stress, she thought. Plus, it was hard to sort through the signs her body was giving her, as her hearing slipped, her body adjusted from her last pregnancy and she recovered from a recent broken ankle. Then the right side of her face began going numb.
Starting with her Dickson County primary-care physician and initial scans, Jordyn learned she had a large tumor, an acoustic neuroma, in the base of her skull. She describes a good two to three days of crisis as she and her husband Matt absorbed the news.
Jordyn was 32, and as she says, her early 30s came in like a roaring lion.
“The most daunting thing was thinking about how you care for your family,” Jordyn said. “I may be ‘just a mom,’ but our home depends on me. So it was hard, just thinking about the task at hand but knowing we could face it together.”
Research leads to Vanderbilt
With recommendations spanning from a local surgeon to a clinic in California, Jordyn began researching through the Acoustic Neuroma Association and Facebook support groups. She sent her scans to California but also about an hour away to Nashville, to the Vanderbilt Skull Base Center.
“I said, ‘I don’t want the doctor who wrote the book on the surgery; I want the doctor who does them a lot.’ It’s great if he speaks at conferences, but I want this doctor to be in the surgical center operating,” she said. “You want those people who are hands-on, have been in the trenches and have done this work over and over again.”
Jordyn chose Vanderbilt, which for more than 40 years has led the field, training the nation’s top skull-base doctors and performing thousands of the surgeries.
Jordyn underwent surgery at Vanderbilt on Sept. 1, 2016, with Alejandro Rivas, M.D., and Reid Thompson, M.D., working together in a delicate operation that lasted more than 16 hours as they painstakingly separated tumor from tiny nerves that control facial function and balance.
Jordyn credits her mother with giving her the strength and tools to be her own strong health advocate. The year before, Jordyn had helped her mother navigate treatment following a pancreatic cancer diagnosis. When her mother was referred to a physician who wasn’t a specialist, Jordyn sought a second opinion.
She lost her mom in August 2015, and was still adjusting to the loss when the first symptoms of her own illness began developing.
Jordyn’s mother loved to travel and regretted that she hadn’t traveled more. When friends living in Germany invited Jordyn and her husband, Matt, to visit in early 2016, they decided to go. With supportive grandparents to help with the kids, they embarked on 10 days in Europe – a first for them both – and it was on Day 1 of that trip that she noticed an odd sensation while brushing her teeth: Her tongue felt like it had been burned only on one side. She thought it might have been a reaction to the sensitive toothpaste she packed.
“I thought maybe it was stress, it can do so many strange things to your body. And I had been stressed leaving the kids. I kept waiting for it to go away,” she said.
Back home, soon the right side of her face started feeling slightly numb. That’s when she called her primary care physician, who suspected either internal shingles or an acoustic neuroma. They treated the simplest thing first, but the shingles medicine didn’t work that June. Jordyn waited until their family left after a Fourth of July visit, and went back.
The day that Jordyn went for the scan that revealed her tumor, she realized that she was walking into the same imaging center where her mother had been diagnosed with pancreatic cancer exactly two years before. She quickly took comfort. “I thought, ‘I’ll just think of it as that’s her way of looking out for me, that she’s with me through this’,” Jordyn said.
Jordyn’s tumor was not cancerous, but she drew on the experience of helping her mom to help herself.
“I am grateful to God because I feel like my mother’s illness helped prepare me for this. I was a stronger person when I got to this diagnosis than I was before her illness. It prepared me to take charge and to research, which led me to Vanderbilt.”
"I’m so grateful for these surgeons. I gave them my whole self and said, ‘Please take care of me.’ And they made me feel so safe the whole way."
Preparing for surgery
Jordyn was seen immediately through the assistance of a Vanderbilt care coordinator, she had an MRI on a Saturday night, and was in Dr. Rivas’ office on Monday.
“Sitting in the waiting room was nerve-wracking, just wondering what the details were and wondering what information was about to be handed to me and how quickly it was going to happen. You kind of feel like a ticking time bomb when you find out you have this large tumor in your head and it needs to come out. You worry about your quality of life and what you’re going to be after letting someone inside your head.
“But I knew Dr. Rivas’ reputation preceded him and I knew I already had a level of trust for him as a surgeon. That helped my anxiety for sure.”
Surgery was set for the next month with Drs. Rivas and Thompson.
“Jordyn had a very large, but benign, and kind of strategically placed brain tumor,” said Dr. Thompson. “These are tumors that are growing in the high-rent district of the brain: right on the brain stem. They are benign tumors of the tiny little nerves that come off the brain stem, and these nerves are your hearing and balance nerves. What makes these tumors so challenging to treat is their location. They’re located right next to one of the most critical structures in the body and that’s the brain stem.
“In Jordyn’s case, it was really clear that for someone her age with the types of symptoms she was developing that she had to have the tumor treated. There are different ways of treating a tumor like hers, but the right way to treat her was with an operation to remove it.”
In the weeks leading to surgery, Jordyn focused on taking care of herself.
“I felt like the best thing I could do was be as healthy as I could be physically, mentally, spiritually,” she said. “The whole month of August, I exercised, I tried to keep my stress level down.”
On Sept. 1, 2016, Dr. Rivas and Dr. Thompson performed the long, delicate surgery to extract the large tumor from the base of her skull.
“Ultimately in these surgeries, facial function -- the movement of the face -- is what’s at stake,” said Dr. Rivas. “We’re very careful with the facial nerve. As soon as I finish a case, I just want my patients to wake up: I just want to know, how’s the facial function? Can they smile?”
Jordyn remembers that first morning when Dr. Rivas made rounds to check on her after surgery: “He asked me to smile and watched for my expression. I just remember him being so happy that I had a complete smile. I had no weakness whatsoever on this side of my face as soon as I came out of surgery.”
Home in a few days, Jordyn began weeks of recovery. The hardest part was the restriction on lifting anything heavy, which meant she couldn’t pick up her 1-year-old daughter.
For six to 12 weeks Jordyn had to be super cautious, though she was eager to run and swim. Her plan afterward was follow-ups at 6 months and 1 year, with MRIs yearly for 5 years.
Though she has hearing loss in one ear, which she knew was likely, Jordyn is back to normal life with her husband and children. And she’s grateful.
She’s grateful for the strength her mother gave her, the ultimate support of her husband and more time with her kids – remembering the time she feared that wasn’t a given.
“And I’m so grateful for these surgeons. I feel like I was lead to them through prayer. They were everything. I gave them my whole self and said, ‘Please take care of me.’ And they made me feel so safe the whole way, that they were taking care of me as a whole person and that they cared about me as a whole person.”
Now, Jordyn and Matt’s children are 4, 6, 8 and 10. Their world is busy and full.
“My life marches on. I feel like me again. I feel great.”