MUSC Health welcomes arrival of its first upright MRI machine, thanks to determined EDS patient

Your scans are normal. Your lumbar MRI is normal. Your cervical MRI is normal. But the pain persists. The symptoms are becoming debilitating, and your options to treat your unknown source of pain and discomfort are decreasing day by day. Your doctors are stumped, and you’re worried that soon, they will give up on you and brush you off as a case of, “Well, there’s really nothing else that we can do. We’ve exhausted all options.”

Stories similar to these echo through exam rooms as patients eagerly await a chance to see renowned neurosurgeon Sunil Patel, M.D., chairman of the Department of Neurosurgery at MUSC.

Traditionally, when a patient experiences spinal discomfort or neurological decline, doctors will first request an X-ray of the spine. If the issue cannot be identified as musculoskeletal or orthopedic, an MRI is typically recommended next.

Patel, on the other hand, refers a large handful of his patients out for upright MRI imaging, a more dynamic diagnostic approach – but one that, unfortunately, isn’t nearly as readily available as a traditional MRI machine.

Over the years, Patel has become widely known for his growing interest and expertise in treating the neurosurgical and neurological comorbidities linked to the connective tissue disorder Ehlers-Danlos Syndrome (EDS). His expertise has gained him patients from around the U.S., extending beyond the U.S. to other countries such as Australia and Canada.

 

On Oct. 11, MUSC welcomed the arrival of its first upright MRI machine. Patel is pleased to have this advanced diagnostic tool now available, as it will not only benefit his patients but also provide more comprehensive diagnostic capabilities for other neurosurgeons both within MUSC Health and beyond. 

This MRI would never have been made possible without the determination, persistence and philanthropic efforts of Charleston native Sydney Severance, 20, a former patient of Patel’s.

In 2020, Severance was diagnosed with Ehlers-Danlos Syndrome after experiencing a sudden decline in her health months after recovering from a mononucleosis infection. Shortly after her EDS diagnosis, she was referred to Patel, where she was diagnosed with both craniocervical (CCI) instability and tethered cord syndrome, two common comorbidities seen in the EDS population.

Until recently, in order to investigate and confirm these conditions, Patel referred his local and traveling patients to facilities in Greenville, South Carolina, and Charlotte, North Carolina, for upright imaging, as both locations were the closest available facilities. While a four-hour road trip may seem manageable for most, it can be a significant challenge for those suffering from debilitating spinal symptoms. In such cases, a journey of that length, even for essential diagnostic procedures, can sometimes exacerbate their conditions and cause additional discomfort.

At the time of Severance’s MRI referral, the only available machine was in Maryland, due to complications with her previous scan in Greenville. Given the severity of her condition, she wasn’t able to tolerate the eight-hour drive or the hour-and-a-half flight, as navigating the airport – a highly stimulating environment – would likely trigger most, if not all, of her symptoms.

 

A family friend generously offered to fly her by private jet, as she was unable to sit upright or tolerate light or sound at that time. This act of kindness deeply affected her and allowed her to undergo the critical diagnostic scan. It also heightened her awareness of the many patients facing similar challenges whose conditions had progressed to the point where travel for necessary medical care was simply not an option.

This personal experience is what inspired Severance to launch her campaign, Operation Upright, with a goal of raising $1.2 million to support the purchase of MUSC Health’s own upright MRI machine.

In just two years, Severance surpassed her fundraising goal in April of 2023, raising $1,224,567, including a generous $600,000 donation from an anonymous donor. A total of 480 donors contributed to her mission, with 83 individuals creating their own fundraising pages to support her goal. MUSC Health made up the difference in the $2.5 million piece of equipment and the facility renovations.

Remarkably, Severance launched her campaign while bedridden, her windows boarded up to shield her from sunlight. Today, Severance is thriving as a sophomore transfer student at Vanderbilt University. She’s now able to walk around campus, attend classes and spend time with friends – small victories that once seemed out of reach. Meanwhile, she watches her dreams come to life back in her hometown, celebrating accomplishments that will touch the lives of countless patients.

The official ribbon-cutting ceremony to launch this new MRI machine will take place on Dec. 16 at MUSC Health’s West Ashley Medical Pavilion in Charleston, welcoming donors and faculty who helped to bring this project to fruition. Patel and his physician assistant, Jared Nix, are excited to be able to refer their patients for appointments for the upright MRI at MUSC Health. 

Appointments, however, are not limited to Patel’s patients. Anyone who could benefit can book appointments with a referral from an overseeing physician. 

This upright MRI provides images under weight-bearing circumstances, demonstrating how gravity can affect the body. This capability is particularly useful for diagnosing conditions involving back pain that worsens when standing or sitting but eases when lying down. By imaging the spine under the body's natural weight, it can detect issues like spinal compression or joint instability that can be missed in a traditional supine MRI. For conditions like CCI, which Patel treats surgically, the upright MRI offers more precise diagnostics. It also allows patients to be scanned in positions that mimic or trigger pain patterns, providing a clearer understanding of patients’ symptoms. It can rotate patients from a vertical to a horizontal orientation, enabling both weight-bearing and supine scans in one session.  

Patel and his team are eager for patients to experience the advantages of this specialized equipment. They believe it will not only enhance diagnostic accuracy but also provide more personalized care, allowing patients to find solutions to complex conditions that may have previously gone undetected. By utilizing this advanced technology, they hope to improve patient outcomes and overall quality of life.

“The upright MRI is an important tool to have in evaluating spinal issues,” Patel explained. “It provides dynamic information on the mechanics of the spine in the natural upright position, especially for patients with Ehlers-Danlos Syndrome who experience spinal symptoms. The availability of this upright MRI machine will drastically shorten the time to diagnosis of spinal instability.

Patel added that this unit also has use in degenerative spinal disorders, giving spine experts a more accurate diagnosis for the source of symptoms and has the potential to change the landscape of surgical practice. “The human spine is built for upright activities. Utilizing this form of imaging will change how spine experts practice."