Pain is a debilitating symptom affecting almost one-fourth of the U.S. population. Finding a cause and moments of relief is a daily path for many. Lauren Casey is a 23-year-old who developed severe hip pain when she was 15. She went through years of physical therapy, doctor appointments and chiropractic treatments, but the pain never ceased, and her ribs began dislocating.
Casey’s chiropractor noted unusual curvature in her neck and avoided manipulating her spine. After a few months of hip treatment with no improvement in her pain, he referred Casey to Julian Bailes, MD, a surgeon who focuses on spinal disorders, brain disorders and neoplasm and serves as Chair of Neurological Surgery at Endeavor Health in Evanston.
Dr. Bailes pulled in the expertise of Russell Nockels, MD, a neurological surgeon who specializes in spine surgery and serves as Vice Chairman of Neurosciences, Chief of Spine Surgery, and Surgeon in Chief at Endeavor Health Neurosciences Institute’s Advanced Neurosciences Center in Arlington Heights.
A diagnosis and plan
Casey got a diagnosis of basilar invagination, a very rare spinal malformation. Her Endeavor Health treatment team expanded again to include more physicians from Endeavor Health Neurosciences Institute’s Advanced Neurosciences Center, including:
- Melanie Fukui, MD, neuroradiologist and Chief of the Division of Neuroradiology and VP of Quality for Neurosciences
- Amin Kassam, MD, neurosurgeon and Chairman of Neurosciences
- Sammy Khalili, MD, head and neck surgeon and Chief of Otolaryngology
Basilar invagination is flattening of the skull base that allows the upward motion of the second vertebrae (the odontoid). While some people are born with this rare condition or develop it as part of another disease process, it can also occur in an accident or fall. The result is possible pressure on the brainstem and spinal cord or narrowing of the opening between the skull and the spinal canal (that contains the spinal cord and brainstem).
Common symptoms include dizziness, confusion, tingling or loss of sensation in the extremities, inability to swallow or talk at times, headaches and pain, and weakness. Treatment is based on the severity of symptoms and may include medication, activity limits or surgery.
Surgery was the only option for Casey.
“My surgeons made it clear that if I had been chiropractically adjusted at all, it’s very likely I would’ve died or been paralyzed on the table right then and there,” Casey said.
Pioneering surgery
Dr. Kassam felt that he could save Casey’s odontoid and not have to remove it, by creating a window in the bone in the skull base to allow it to return to its normal place. He also believed they could do so without making an incision in her mouth or pulling on her tongue, as was the traditional approach. They thought they could do it all through Casey’s nose.
“It was explained to me that Dr. Kassam pioneered the surgery of going in through the nose to remove some of the spine and that he will be one of my surgeons. I felt amazing about this, I thought, ‘If I have the doctor that made it up, I must be in good hands.’ They did emphasize how rare my case was but let me know they have worked on cases similar (in terms of spinal stenosis) before.”
Casey’s first surgery was on Jan. 26, 2024, when she underwent transsphenoidal odontoid resection/clivectomy and application of a halo device. Casey remained intubated and partially sedated until the next surgery on Jan. 29, 2024, when she had a posterior fusion for the occiput to C5 of the cervical spine.
Dr. Kassam performed the first part of this surgery by going through Casey’s nasal cavity, which was less invasive. Dr. Kassam conceived of the procedure and was the first to report it in 2005.
In Casey’s case, an endoscopic clivectomy was performed. During the surgery, a type of intraoperative CT was used to confirm that the odontoid had been reduced to a more normal position. This was the first time the procedure had been modified using that technique to correct this particular spine malformation.
Next, Dr. Nockels performed the posterior fusion of her spine so that her new, normal spinal alignment would be preserved, allowing her brainstem and spinal cord to remain healthy.
Recovery
The recovery was painful and difficult for Casey. She remembers when she was intubated, with gauze up her nose and immobilized from the halo device. It was then that she found her hero, Duane Drenthe, an Intensive Care Unit (ICU) nurse at Endeavor Health.
“Though I couldn’t talk or motion my hands, we figured out a way of communication for things I needed, such as having my mouth suctioned. He was there for the most important bits of my surgeries, and honestly, I appreciated him so much. I had a lot of great nurses, but he made me feel really cared for on a deeper level,” Casey said.
Three days after the second surgery, Casey moved out of the ICU. Casey found eating difficult at first because her throat was swollen after the intubation, which is common, and her neck felt pulled upward from the halo. As she continued to recover and heal, she was sent home about one week later.
Good to go
The halo was in place for one month, followed by a hard collar and then a soft collar, each worn for about one month. Casey took a 2-month medical leave from work, and said that even walking around the house was a lot of work.
Today, Casey said she is “amazing” and “good to go,” without any hardware, physical therapy needs or future surgery requirements. The pain that plagued her for eight years is gone, too.
“My hips don’t hurt anymore, which is crazy to me because I struggled with that from ages 15 to 23. And my rib pops in and out of place, but that’s more progress than constantly being out of place. I have limited range of motion, but I also kind of had that before my surgery, so it’s not something that’s hard to get used to.”
Casey works as a software engineer and lives with her sister, mom, dad and two dogs. She is working on a master’s degree in computer science. She loves everything art, photography and nature.
She also holds no grudges for the lengthy road to diagnosis, and said, “It’s important to know that I didn’t have the typical symptoms of cervical spinal stenosis, like headaches, migraines, nerve issues and weak muscles, because I was born with it. But because I was born with it, my body compensated, which is why my ribs and hips hurt. So, it’s not the previous doctor’s fault for not finding it until I was 23. I mean why look at my neck when my pain is in my hips?”
