My plea is that consideration would be given to having an Upright MRI installed in Charleston, South Carolina. This is a crucial diagnostic tool for craniocervical instability (CCI). There are only a handful of qualified neurosurgeons that do occipito-cervical fusion to correct craniocervical instability often caused by Ehlers Danlos Syndrome (EDS). MUSC in Charleston is very fortunate to have Dr. Sunil Patel who is one of those neurosurgeons and probably the most well regarded one in the EDS world. Physical Therapist Susan Chalela is also in this area and both fully understand EDS along with works closely with Dr. Patel. Patients are flying in from all over the United States and even other countries to see Dr. Patel. Much like my own son, many of these patients are medically fragile by the time they get this point and often after many years of trying to get medical answers for their condition. What may seem like a simple 4 to 5 hours car ride to most is pure torture to many of these CCI patients like my son. A car ride means bumps that cause brainstem compression and many neurological symptoms. Often this follows with several days in bed just to recover a little from the car ride. We personally had to go out of state for my son’s Upright MRI which also meant paying the cost fully out of pocket. Care for EDS and CCI is so hard to come by but Charleston has become known for having some providers that understand these conditions. It would be ideal to have an Upright MRI where this growing population of patients could get the needed Upright MRI while in Charleston instead of having to travel 4 to 5 hours away.
Upright MRI is an improved MRI imaging technique that allows for dynamic, weight-bearing imaging and has been utilized in medicine for the past 15 years. It is well documented in the medical literature that traditional supine evaluation does not accurately reflect physiological forces and as a result, can miss pathologies that are detectable by upright MRI. Additionally, upright MRI is ‘open’ which allows for MRI scans of patients with conditions that would make traditional MRI imaging difficult and allows for parents or caregivers to be present to reassure patients during their scan. Currently, MUSC does not have an upright MRI despite it’s proven usefulness to several physicians. Patients of MUSC doctors must travel hours to get appropriate scans, which results in more out of pocket expenses for patients and less revenue generated for MUSC. As a patient at MUSC, I have received excellent care from Dr. Patel, as well as several other physicians. However, I have been disappointed in being unable to receive all of the testing related to my medical care here in Charleston. I have made several trips hours away, traveling alone with complex health conditions to receive an upright MRI at another facility. My upright MRI provided invaluable insight into my spinal instability that was missed on traditional supine MRI. Because of this technology, I was able to get an accurate diagnosis and receive the spinal fusion I desperately needed to allow me to continue my education. But the travel, time away from my graduate school studies and expenses to get these MRIs have been difficult, exhausting and a huge inconvenience. We have the opportunity to address an unmet medical need for patients at MUSC and Shawn Jenkins Children’s Hospital with the addition of an upright MRI scanner to the radiology department and I hope that through fundraising efforts, this will be possible.
With undiagnosed damaged to C5-6 and instability to C4-5 and C6-7 (etc. check my records for exact details) I was in severe pain and suffered other neurological issues every day for years. Traveling to MUSC and Dr. Patel’s diagnostic and surgical skills were worth the 3 to 4 hour drive, each, there and back. However, as a patient in severe distress every wasted day is a small lifetime; when in such pain and detrimental effects on my entire body were felt. The driving back and forth is added wear and tear on a fragile body. As far as medical insurance goes, if this test had been done when first available and I had medical access to it, we both would have had a financial savings. (Other MRI’s, x-rays, occipital nerve blocks, medications, braces, migraine treatments, chiropractic care which some may have made it worse, etc.) All the driving with this pain and musculoskeletal damage also put me at higher risk of accident and with connective tissue disorder had to have a negative impact on my lower spine. Ironic we can further damage our spine, while seeking expert medical diagnosis and care; MUSC did a great job in scheduling my appointment and tests on same day to reduce travel and such and an upright MRI should be an essential for the level of expertise at MUSC.
I am one of Dr. Patel’s patients and have received care from him for the past 14 years. I had to travel to Charlotte for an upright MRI while my health was declining. My husband and family could not take any time off work to accompany me, so I had to make the trip alone. I ended up having to go to Charlotte for an upright MRI twice because there were issues with the first scan. First, the disk that they sent me home with was blank. We had to wait for a new disk to arrive and when it finally came, we found out that they did not get the correct images that Dr. Patel needed. So I had to make a second trip to Charlotte to have the scan redone. It ultimately added months of pain and discomfort to my treatment time that could have been avoided.
Dr. Sunil Patel and his team have “changed what’s possible” for me by correcting my Craniocervical Instability (CCI). After years of unexplained health issues, Dr. Patel gave me hope. My closest option for proper diagnosis via Upright MRI was Greenville, SC. A lengthy prior authorization process, waiting list, and 4-hour drive (one way) stood between me and definitive answers. Had there been an Upright MRI in my hometown of Charleston, SC, I could have gotten diagnosed and treated so much more quickly. I hope that future CCI and other patients will have the benefit of an Upright MRI right here in the Holy City.