Lauren Walsh

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.