Cancer and Clinical Services Patient Stories

“I’ve got you” – that’s what Ohio State neurosurgeon, Vikram B Chakravarthy, MD, told 23 year old Kacey Howe – and she believed him. She had come to the OSUCCC – James after many months of unsuccessful treatment and few answers from doctors closer to her home in Springboro, Ohio, including surgery for what had been diagnosed as a giant cell tumor in her spine. “I felt so confident as soon as I got to The James,” Kacey says. “They knew something was wrong with me and wanted to take care of it.”

It had all started with pain in Kacey’s neck; she thought she had simply slept wrong. When the pain continued to worsen and she developed headaches and limited range of motion, her primary care doctor suspected a sprain – but a steroid shot and pain pills didn’t work. Two weeks later, with what she describes as excruciating, shooting pain in her head, Kacey ended up in the ER where she had a CT scan. Told it was only a mild strain, she was simply sent home with pain pills. Yet the pain continued to intensify – even as Kacey added physical therapy and neck adjustments with a chiropractor. Eventually, movements as simple as coughing, eating, laughing or talking became unbearable.

Knowing they needed answers, Kacey’s mom contacted a friend who worked as a nurse practitioner with a nearby neurosurgeon. X-rays, MRI scans and a PET scan revealed a 2 cm mass in the C1 area of Kacey’s spine. A biopsy at a nearby hospital led to the diagnosis ten days later of a giant cell tumor. Surgery was scheduled for the following month, but as Kacey’s mom explains, there was still no discussion of a post-surgery follow up plan. “They didn’t even do a CT scan after surgery to see if they had excised the entire growth,” Tracy says. “They simply sent us home. Kacey had no IV antibiotics, no pain pills and no instructions other than ‘no physical activity’ until she was feeling better.

“I kept calling because Kacey was still in pain and still had the same limited range of motion following surgery. I asked about getting scans again too, and they kept telling me that because the surgery itself caused physical changes, scans wouldn’t be useful. None of it was logical to me.”

As mothers do, Tracy didn’t quit. She obtained an order from Kacey’s primary care physicians, and a new scan showed a lesion in the same place. “But the doctors still didn’t talk with us about a plan,” Tracy says.

With their confidence shaken, the family moved Kacey’s care to The James, and she was quickly scheduled for a whole new series of images, with X-rays, CT scans, an angiogram of her vertebral artery and an MRI. “Everything was immediate there,” Kacey says. “It was completely different – the kindness, the caring, the knowledge – and Dr. Chakravarthy answered all my questions.”

The images taken at The James revealed that the growth not been removed during the previous surgery and had increased in size. “But Dr. Chakravarthy pulled up my scan and explained everything to me,” Kacey says. “He told me ‘We’re getting it out’ – and I just knew they were going to. I trusted him completely.” Surgery was scheduled for just six days later.

“Every person in the OR knew my case, how complicated and rare it was, and they understood the plan,” Kacey says. “I couldn’t believe how many people were in there to take care of me.”

Over the next six hours, Dr. Chakravarthy removed the mass during a cervical laminectomy on Kacey’s C1 vertebrae, careful to avoid the vertebral artery and minimize any residual damage. A Jackson-Pratt drain was placed to remove excess fluid from the surgical wound, which helps reduce the risk of infection and build-up of fluid and speed healing. A plastic surgeon, Kerry-Ann Mitchell, MD, PhD, also revised a scar from Kacey’s first surgery that had not healed properly by redoing the entire incision and fixing the muscle flaps.

“There I was in the waiting room, freaking out,” says Tracy. “My daughter was on her stomach with her vertebrae exposed, and one knick could cause paralysis. But Dr. Chakravarthy came out to talk with me – he even showed me a picture of what he had taken out – and Dr. Mitchell talked to me too. That made such a difference.” The surgical team also completed new scans so they could immediately compare them to Kacey’s pre-surgery scans and confirm that the entire mass had been removed.

She was in the clear.

Kacey was given IV antibiotics, had a pain pump and was seen by both a physical therapist and occupational therapist during her three-night stay following surgery. “Dr. Chakravarthy came to my room every day to check in with me. Dr. Mitchell visited me too. They had already scheduled my follow-up MRI before I went home,” Kacey says.

Kacey’s initial treatment plan also called for monthly injections of chemotherapy following surgery. To prepare for this, she was seen by a dentist (due to potential treatment risk to her jaw) and met with a fertility expert. Prior to her first treatment, the pathologist also let Kacey and her mom know that he wanted to send the removed mass for genetic testing, which is done to check for hereditary causes, provide a molecular profile of the tumor to further tailor treatment and gather information for clinical trial matching for cancer patients.

That changed everything.

The test led to a diagnosis update: Kacey had a hereditary form of myositis ossificans, a non-cancerous condition that causes bone to grow inside of muscle. That meant chemotherapy was no longer required. “I’m very rare,” Kacey says. “Not only is myositis ossificans rare itself, but it’s normally seen in a kneecap or an elbow, often in athletes or following trauma, and not in a neck. Mine was in a tough spot to get to.”

She describes feeling “like myself again” just four weeks post-surgery. “My scar is now barely visible, and I can work out, take vacations and do things just like before,” she says. “The pain is completely gone.”

“And they always took their time with us,” Tracy says. “I’ve never had to call, because they anticipate my questions. We left the hospital knowing what to expect and the potential issues Kacey might face in the future because part of her spine was removed.”

Kacey will continue to have surveillance scans done at a health care facility near her home because it’s more convenient, but her care is still managed by her team at The James. “I’m always excited to see them,” she says. “I grew a lot during this rollercoaster; I see life differently. And I’m so thankful for Ohio State.”

Her mom couldn’t agree more.