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Chordoma: Susan's Story

Susan got the shock of her life when she was diagnosed with a chordoma, a tumor growing in her spine.

Susan feeding giraffe at the zoo Susan, back to her active routine after her chordoma surgery.

November 4th was Susan’s wedding anniversary, and she and her husband Tim were in the car on their way to The Johns Hopkins Hospital. Just two weeks earlier, Susan had been diagnosed with a chordoma, a tumor that was growing at the base of her spine.

“As an active, lifelong health, nutrition and fitness practitioner who has never been hospitalized, I was in shock.” says Susan. “For the first time in my life, my world suddenly felt like it had spun out of control.”

On the way to Baltimore, Tim asked one more time: “Do you want to keep going, or do you want to just go to the airport and fly someplace wonderful?”

Susan, thinking of future trips and adventures she wanted to share with him, said, “Keep going.”

Chordoma: A Rare Diagnosis

Chordoma is a rare tumor. In Susan’s case, the doctors had caught it early. But she says the diagnosis sent her reeling.

Her general practitioner recommended a specialist in surgery for chordoma tumors: Dan Sciubba, M.D. After the consultation, Sciubba recommended a surgery called distal sacrectomy that would involve removing a section including several bones — along with the tumor — from the base of Susan’s spine.

Sciubba says, “Chordomas affect literally one in a million people, about 300 each year in the U.S. The Johns Hopkins Neurosurgical Spine Center is a popular place for patients with chordomas, and as a result, I operate on these tumors regularly. Chemo and radiation don’t work effectively with chordomas; often the only way to address them is to operate.”

Essential Expertise

Surgery for chordomas is complex. Complete removal is a must, since the risk of recurrence is high. At the same time, the neurosurgeon must take care not to harm the delicate nerves branching off of the spinal cord that give the patient the ability to walk and experience sensation in her lower body. The team must include a skilled plastic surgeon to reconstruct the lower back and close the large incisions associated with sacrectomy.

Knowing the kind of skill required to address the chordoma was what kept her on the road to Johns Hopkins. Susan says Sciubba had the communication style she was looking for: direct, informative and compassionate. She and her husband left the first consultation with a realistic view of what they were facing, along with a good measure of hope.

Susan says, “I had immediate peace of mind knowing I had made the right decision with Dr. Sciubba and [Johns] Hopkins.”

Johns Hopkins saved my life. I told Dr. Sciubba that the women in my family live well into their late 80s, 90s and beyond, and I didn’t want to be the one to break that streak. Now I have every hope and confidence that I will carry on that family record.

-- Susan

Susan, with the nurses and technologists who helped her

 

Sciubba says, “Susan had read up on these tumors, and I was very clear with her about the risks involved in this major surgery. We would have to amputate several bones in Susan’s sacrum (lower spine) and include margins of healthy tissue to ensure we remove all the cancer. She was understandably afraid. There was a chance that the surgery can leave a patient with loss of lower body function, including the ability to walk.

“But once she made the choice to go ahead with the surgery, she went for it and was super tough. Her courage paid off. We were able to preserve the important nerves in her pelvis and got a terrific result.”

Skill, Compassion and a Touch of 'Zen'

Susan is also grateful for coordination among the members of her entire care team. She writes, “Dr. Sciubba and his surgical team, including [physician assistant] Reese Rosato and [medical office coordinator] Valerie Buxton-Punch were empathetic and responsive to any questions and concerns that I had. I’m sure Reese fields a multitude of emails daily, yet her thoughtful, informed and speedy responses made me feel like I was her only patient!”

She notes that her anesthesiologist, Dr. Thai Tran Nguyen, and her plastic surgeon Dr. Oluseyi Aliu took time to comfort her and her husband before, during and after surgery.

She says, “My first night in the neuro-critical care unit, [nurses] Carly Martini and Katie made me comfortable and reassured me. Carly was able to quickly discern that the pain meds were too strong for my body, which was not used to anything stronger than an occasional [naproxen]. She quickly ‘downgraded’ me to less powerful medications.”

Susan appreciated the details that went into her care at the NCCU. “When Carly came in, she’d always gently turn me and rearrange the sheets so they were more comfortable. She called it ‘Zen-ing’ the bed.”

Susan using her walker at The Johns Hopkins Hospital
Susan recovering from her surgery, with the support of her Johns Hopkins nurses and technologists.

 

Coaches for Recovery

 “I have no words to express my gratitude for the care of the nurses and techs on the neurological floor. Shannon, Brittany, Angela, So’Nita – I’m grateful they were there. They not only did their work efficiently, they listened, laughed and communicated with me.” During one procedure that Susan feared, she writes that So’Nita managed to help her relax and actually laugh.

The team’s support continued as Susan got better. “As I made my laps around the floor, first with shuffling steps, then with longer, more confident strides, the nurses and techs behind the desks or walking by cheered me on like I was an athlete.”

As she acknowledges everyone who helped her, Susan has the most gratitude for her neurosurgeon. She writes, “Dr. Sciubba worked meticulously to save the nerve roots and minimize long-term nerve damage. And the best news is that he excised the entire tumor with clean margins! They got it all. It may be a rare tumor, but not for Hopkins.” 

The Way Onward

On December 13th, Susan celebrated her birthday, and on that day Aliu, her plastic and reconstructive surgeon, removed the last of the drains, sutures and dressings. Susan says he gave her a hug, wished her well and asked her to keep in touch.

Susan’s homecoming was triumphant. “Tim took all the signs down in our home that read ‘No bending, no lifting, no twisting, no sitting, no steps’ and replaced them with ‘Bend! Lift! Twist! Sit!’”

“I am back to work, the gym, my painting, my causes, my life,” Susan says. “I never needed to open the bottle of pain meds they sent me home with. I am fully functional and have none of the long-term damage that can accompany this type of procedure. I know that not everyone is as fortunate as I was, but I believe my great results had a lot to do with early detection, taking good care of myself and the wonderful care I received from my Johns Hopkins team.

“I feel great, and know that I’m only going to get stronger and feel better with additional recovery time.” 

Susan, smilingSusan is back to normal after intricate surgery to remove a chordoma tumor.

Susan's Treatment Team

Learn more about Susan’s surgeons:

Photo of Dr. Daniel Michael Sciubba, M.D.

Sciubba, Daniel Michael, M.D.

Professor of Neurosurgery
Professor of Oncology
Professor of Orthopaedic Surgery
Professor of Radiation Oncology and Molecular Radiation Sciences
Director, Spine Tumor and Spine Deformity Surgery
Co-Director, Spinal Column Biomechanics and Surgical Outcomes
Director, Spine Research
 
Photo of Dr. Oluseyi Aliu, M.D.

Aliu, Oluseyi, M.D.

Assistant Professor of Plastic and Reconstructive Surgery
 
 
 
drawing of sacral section of the spine

Chordoma Information

 

Chordomas are tumors that can occur anywhere within the spine or the base of the skull, but almost a third of them show up in the lower back—the sacral area. Chordomas form from remnants of the notochord, embryonic tissue that eventually forms the center of spinal disks.

Learn more about chordomas.

Dr. Rafael TamargoNicholas Theodore, M.D., Director of the Neurosurgical Spine Center 

Neurosurgical Spine Services

The Johns Hopkins Neurosurgical Spine Center is dedicated to relieving pain, restoring function, and implementing cures for a range of conditions affecting the spine. Our team creates highly individualized treatment plans for each patient, ensuring that you get the best results with or without surgery.

Learn more about the Neurosurgical Spine Center.

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Pediatric Neurosurgery: 410-955-7337

 

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