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 Joe Zoller of St. Louis, Missouri (formerly of Manitowoc, Wisconsin as well as Houston, Texas). Joe 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 1) 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 two 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.

• Joe's most recent challenges involve things that seem to exacerbate his CRPS--issues with his liver, gall bladder (now removed), and digestive tract cause additional discomfort with no easy or obvious methods for treatment available.

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 was a combination of oral meidcations, including Ketamine and something called called Buprenorphine. While that medication might normally cause significant impairment to cognitive processes, Joe's pain is so intense that even that combination only took the edge off the pain, even if still leaving him exhausted toward the end of the school days. Still, these treatments gave Joe the ability to continue to serve as a high school teacher, teaching subjects like physics, astronomy, chemistry, and various math classes (for nearly 30 years now), and helping hundreds of students get into and succeed in various colleges and professional, academic programs. 

During this recent time when Joe has lived and taught in the St. Louis area, he is being treated by Dr. Bryan Whitlow of the Interventional Pain Institute. Earlier this year, Joe was able to cease all oral medication intake, replaced with a new medication pump implanted by Dr. Whitlow. This device complements his spinal cord stimulator. While the stimulator deliberately overwhelms nerve signals with both high and low frequency electric current, the medication pump delivers a low dose of both morphine and Bupivacaine into the fluidic, intrathecal space surrounding the spinal cord, preventing the medication from every being in his bloodstream and affecting. This pump works automatically and only requires refilling every 60-90 days. The stimulator has a remote control and can be turned off, but Joe keeps in on constantly, only reducing the current flow when he exercises. It does require a weekly recharge, using technology similar to a wireless recharging of cell phones.

These technologies and scientific wonders keep Joe in a position to continue providing for his family of five children and his high-school sweetheart and wife, Stacey. Joe would be the first to acknowledge how blessed he has been despite the daily struggle with pain. His faith in God, love of his family and for his students, and his ongoing quest to better understand the great mysteries in life--the inner workings of the human brain and the nature of the Universe itself--are sufficient motivators to continue the fight.

An image of the Zoller family, circa 2013.