By Shea Wright and Sara McCloskey

Surrounded by close friends and family at her favorite restaurant in Richmond’s Carytown neighborhood, Abigail Rumbaugh couldn’t imagine her 21st birthday being so comfortable and pain-free.

An outing as elaborate as this one wouldn’t have been a reality for Abigail just a few months ago. She lives with a rare spinal condition that significantly limits her mobility and causes chronic pain with everyday activities many may take for granted.

“My friends have kept encouraging me that this whole thing has to get better someday. I just kept telling myself that and that's what I really pushed myself with,” Abigail said.

Two months before her birthday, Abigail underwent a successful, life-altering surgery that has not only granted her improved mobility but has also enhanced her overall quality of life. As the first patient to receive this procedure at VCU Health, Abigail hopes her experience is able to create new opportunities for others.

"This surgery has truly changed my life,” she said. “I'm grateful for every step I can take now and the opportunities that lie ahead." 

Finding the path to pain relief

Abigail grew up with regular visits to Children’s Hospital of Richmond at VCU (CHoR). At two days old, specialists diagnosed her with an extremely rare birth defect in her lumbar spine called intradural spinal lipoma, which is extra tissue that forms around the spinal cord. When this tissue gets stuck, it causes a neurologic disorder called a tethered spinal cord — limiting the movement of the spinal cord within the spinal column.

Having a tethered spinal cord has severely limited Abigail’s ability to move freely. It’s also caused her to experience muscle stiffness and involuntary spasms, known as spasticity. Simple tasks like sitting, standing, going to school and social events like prom became arduous challenges for her.

“There will be days [where] just trying to take a shower is like the absolute hardest thing or just like going from one room to another. You don't realize how hard these things get until you're in that situation and it’s, like, this should be easy for me to do, but it's not,” Abigail said.

Throughout her adolescent and teenage years, Abigail went through at least six different surgeries to un-tether her spinal cord, all seamlessly coordinated by neurology specialists at CHoR and VCU Health to ensure consistent quality care. According to JoAnn M. Tillett, RN, pediatric nurse coordinator in the neurosurgery department, about 20 to 25% of patients’ spinal cords will re-tether and they will need follow up surgery.

Over the years, Abigail Rumbaugh has sought support from her mom and dad, Heather and Jeff, and her younger brother, Brandon, as she has learned to live with a rare neurologic disorder that limits her mobility. The Rumbaugh family pictured left to right: Abigail, Jeff, Brandon and Heather. (Contributed photo)

Each procedure required Abigail to lean heavily on family, often missing at least two weeks of school followed by six weeks of post-op recovery. Being in the hospital and recovering can be taxing for anyone, but Tillett says Abigail continues to be positive throughout the process. Tillett has been a part of Abigail’s life since she was first diagnosed and started treatment at CHoR.

“Abigail's condition has caused extreme changes in her lifestyle. Things that we take for granted every day were more difficult for her. She’s endured multiple surgeries, a lot of pain, a lot of discomfort and a lot of changes in her daily life. All the while she has kept a positive attitude about it. She hasn’t let it get her down,” Tillett said. 

Innovative procedure shines a “light at the end of the tunnel” for patients

Having endured years of frustration and physical discomfort, with several tethered cord surgeries that all resulted in her spinal cord re-tethering, Abigail and her family made the decision to undergo an innovative surgical intervention that aims to address the root cause of spasticity issues.

Abigail was the first patient to receive a vertebral column shortening procedure at VCU Health. This procedure involves carefully adjusting the length of the vertebral column, relieving pressure on the spinal cord and restoring normal functioning. In some cases, the operation circumvents the tether completely and decreases tension on the spinal cord by shortening the spinal column instead.

"Abigail's case was challenging due to the severity of her spasticity and the impact it had on her daily life. We carefully evaluated her condition and determined that a vertebral column shortening procedure would offer her the best chance of long-term improvement," said neurosurgeon Brian Cameron, M.D., who specializes in complex spinal reconstruction and performed Abigail’s surgery.

Abigail Rumbaugh’s care team highlights how the young adult has maintained a positive attitude while she has managed extended hospital stays and recovery from surgeries. (Contributed photo)

After the procedure in February, Abigail's vertebral column is about an inch shorter and was adjusted to alleviate pressure on the nerves. Her hardest surgery to date, Abigail’s relief wasn’t immediate. But over the past few weeks, she has regained full control over her muscles and experienced reduced spasticity and drastically reduced pain.

“No matter how hard it may get, there's always a light at the end of the tunnel. There's always something that can be done,” Abigail said. “This surgery was sort of my light at the end of the tunnel.”

In the weeks following the surgery, Abigail embarked on a rehabilitation program tailored to her needs. Physical therapy sessions, guided by skilled therapists, focused on gradually improving her strength and flexibility. Abigail's determination and perseverance shone through as she embraced the rigorous program, fueled by the anticipation of a better life.

“I am so glad I got this surgery,” she said. “I am so grateful for the team at VCU Health who explained every step of the surgery, eased my fears, and has been a huge part of my success.”

While Cameron was confident Abigail would benefit significantly from the procedure, her progress surpassed all expectations. In just two months post-surgery, Abigail was back at work at a local pharmacy and felt comfortable standing for extended periods of time. Muscle stiffness and spasms diminished significantly, allowing Abigail to walk with greater ease and grace. Simple activities such as getting dressed and climbing stairs were no longer insurmountable challenges but rather accomplishments to be celebrated.

Abigail's newfound freedom of movement has only continued to open doors to a world she had previously only dreamed of. She’s planning to go to concerts and travel with friends this year, all thanks to the VCU Health team members who continued to be by Abigail’s side every step of the way.

The doors are also opening for other patients with tethered spinal cords to find relief with the vertebral column shortening procedure at VCU Health.

“This [surgery] opens up a new option for patients with recurrent tethered cord that will hopefully eliminate their need for future operations related directly to their tethering. Not all tethered cord release patients require further surgery, but many do and they often get into a repetitive cycle of re-operation leading to gradual functional loss. This offers that handful of patients hope that they can now break that cycle,” Cameron said.

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