Rare Illness Uncovered with Imaging
For nearly 58 years James Smith (patient’s name has been changed to protect his privacy), has defied the odds. He has lived with a rare, undiagnosed congenital condition. It’s called a diaphragmatic hernia. In Smith’s case, his is an even rarer type called Morgagni’s hernia. These types of hernias are discovered now with ultrasound technology usually before or just after birth. Since the usual defect – opening which results in organ migration – is very small at birth, the condition can be repaired. But in Smith’s case, he has lived with it for his entire life. Over time, the opening has enlarged and the herniation has worsened, resulting in a remarkable migration of much of his abdominal components into his chest cavity. Part of his stomach, almost all of his small intestines, appendix, and half of his large intestines (colon) have moved up and remain in his right chest rather than in his abdomen. “This was discovered purely by accident after talking with Dr. Glenn Coates at Wake Radiology,” explained Smith. “I knew him socially and after a conversation one night he said he knew what was wrong with me just by observing me. It was simply incredible. After performing an MRI, his suspicions were confirmed.” Over the course of his life, Smith has lived with compromised breathing and has been taken to emergency rooms when he displayed symptoms of a heart attack. None of those visits resulted in an accurate diagnosis, even after extensive medical exams and imaging studies in other facilities. Smith has to pace himself at meals, eating no more “than half my fist” so that he is not uncomfortable or worse. “Dr. Coates has told me that I was born 50 years too late since infants now can have this condition easily corrected. Since the diagnosis, Dr. Coates is acting as a physician advocate helping me to find a surgeon who may be able to correct this congenital malformation. However, I’m left with few options and nearly no experts who can guarantee results or an improved quality of life for me. Dr. Coates explained that my normal anatomy is in a configuration and position that never occur in the majority of the adult population. How that impacts the remainder of my life, I don’t know. I could live to be 98 or this malformation could cause serious health problems in the interim. “Most of the surgical options require a major open thoracic/abdominal procedures, which has a huge mortality risk. While I don’t know if I will ever be able to have this repaired, at least I know what it is, thanks to Saint Glenn, as I call him. I’ve never had a physician take this sort of interest in my health. He is a very rare person and physician. If anyone can find the right expert to correct this problem, it will be Dr. Coates. I knew that he was a great, conscientious radiologist, but he is also an exceptional, compassionate human being. I am proud to be a patient at Wake Radiology!”