Rise Above Relentless Agony
This site serves as a repository for all information pertaining to a unique variant of very rare medical condition that afflicts Joseph Brandon Zoller of St. Louis, Missouri (formerly of Manitowoc, Wisconsin). JB or "Joe" to close friends and family works as a full-time educator despite experiencing constant, severe pain. Joe's condition is a unique variant of a rare neurological disorder called Complex Regional Pain Syndrome (Type 2) which is characterized by excruciating pain accompanied by physiological changes in skin color, swelling, and abnormal hair growth, typically affecting a hand, foot, arm or leg.
Click the following link to view the McGill Pain Questionnaire which has been used for over 40 years to measure pain clinically resulting from either traumatic injury, disease, or disorder. It is based on this scale that CRPS has been often deemed as the most painful condition known to medical science. Like other extremely painful conditions like cluster headaches and trigeminal neuralgia, the statistical rates of suicide are much higher among those with CRPS than among the general population as those suffering fail to cope with the persistence and intensity of the pain. Describing this as a relentless agony is no exaggeration.
For details on Complex Regional Pain Syndrome (CRPS), visit this web site or search for it using your preferred service and read through the top handful of links provided.
Joe's disorder is somewhat unique compared with others who have the disorder because:
Joe's pain is centralized in his chest with some residual sensitivities throughout the abdominal region,
Joe's pain has never migrated to another area,
Joe's pain has never, in the space of over a decade's time, gone into remission or subsided in any way,, and
whereas there are no skin, hair, or nail abnormalities to see in the esophagus, Joe's chest exhibits a severe form of pectus excavatum and Joe suffers from dysphagia and frequent esophageal impactions which leads to severe odynophagia.
Thankfully, and unlike many who go for years without a correct diagnosis, Joe was fortunate to have had a local doctor who quickly realized that Joe's condition was beyond his knowledge and experience and referred Joe to the Medical College of Wisconsin. Among the doctors there was Dr. Stephen Abram, literally one in the first graduating class of twelve doctors to be officially recognized by the US Board of Medicine in the "new" field of pain management back in the early 70s. Dr. Abram's extensive career made him immediately recognize both the uniqueness and severity of Joe's condition. Consulting with colleagues from across the nation, Dr. Abram suggested a variety of treatments that eventually achieved moderate success.
Although Joe lives with constant, intense pain, he is able to function without being in continual excruciating pain. He now only experiences truly excruciating pain for a brief instant when swallowing. The pain, known as odynophagia is more intense with larger, denser objects, but either solid or liquid and even the regular swallowing reflex for the saliva we produce causes great discomfort. The pain intensifies at times when there is a random dysfunction in the act of swallowing called dysphagia that causes Joe's esophagus to "lock up" momentarily. As seen in these images, Joe's esophagus more closely resembles a typical trachea or "windpipe" with rings and ridges that make the tube rigid and difficult to compress normally as occurs during the act of swallowing. Although the swallowing difficulties are somehow connected to the pain issue, it is true that many people may not even be aware that they have these difficulties without having Joe's extreme esophageal hypersensitivity, and yet, Joe was not even aware that he had this unique hypersensitivity until these issues brought it to light as it is not something that most people would even think to talk about. Joe had always assumed that everyone shared this ability.
Among the progressive treatments implemented by Dr. Abram included the surgical implantation of a neurostimulator device that is programmed to continually generate an electrical sensation that inhibits some of the pain signals being sent to Joe's brain. A second treatment required to help Joe remain fully functional by working through the worst of the pain is a unique drug called Buprenorphine. While the medication is technically thirty times more potent than morphine, it has a unique chemistry that (a.) prevents it from overloading the pleasure center significantly reducing the risk of overdose and addiction and (b.) prevents the normal interference that opioids have on memory and critical thinking processes. As such, Joe has been able to continue to serve as a high school science teacher, teaching subjects like physics and astronomy for eighteen years and helping hundreds of students get into and succeed in various colleges and academic programs. Joe takes other medication to supplement the Buprenorphine as needed when the pain reaches unusual levels of intensity and begins to interfere with his teaching responsibilities or his ability to fall asleep.
An image of the Zoller family, circa 2013.