Renowned facial pain expert “Dr. Zak” of London UK
envisions success in the Foundation’s quest for a cure
As International Neuroscience Coordinator for The Facial Pain Research Foundation, London physician Joanna Zakrzewska,M.D., champions the foundation’s drive to find a cure in 10 years as a possible goal, especially in regard to trigeminal neuralgia.
“Finding a cure for nerve-related facial pains will relieve much more than the pain itself; it will restore vital aspects of life changed by pain,” said Dr. Zakrzewska, popularly known as Dr. Zak. As director of the largest orofacial pain clinic in the United Kingdom, she meets every day with patients, who pour out their stories of facial pain that vastly alters their lives.Among the varieties of neuropathic facial pain, differing in type and severity of pain and in the way the pain progresses or changes over time, Dr. Zak said “classic textbook trigeminal neuralgia, the most painful of them all, is the easiest to tackle in seeking a way to bring about complete pain relief. These patients are most likely to have a mechanical cause that can be treated surgically. With the enormous rapid advances in the neurosciences and the increased speed of translating basic research into medical practice, the Foundation’s ambitious goal may be a real possibility.
“The evidence is clear that some kind of mechanical injury underlies the agonizing facial pain disorder we call trigeminal neuralgia or TN, but the pain itself has psychological results, including fear, anxiety and loneliness that can damage other parts of life,” she said. “There is no literature that describes the psychological aspects of TN—a problem that results from the fact we (physicians) tend to manage the patients almost entirely with a medical approach.” Through writing the book, INSIGHTS: Facts and Stories Behind Trigeminal Neuralgia (a 2006 release) Dr. Zak said she learned much from TN patients, who candidly described what happened to them after the pain first struck and how life changed badly as the pain held on. The stories shared by patients from the UK, the USA and Australia reflect profound emotion and distress, and highlight the need for a cure. A few of their comments, shortened but not edited:
· “The pain is so strong it steals your mind, it takes over all your thoughts. I prayed for death.”
· “Eating and talking would become steadily difficult. I was essentially a prisoner in my own home.”
· “I am not in a position to return to work.”
· “I have decided not to pursue any more teaching responsibilities, although this is what I had hoped to do after I retire from my present position.”
“The face plays a crucial role for every one of us not only physiologically, but also more importantly psychologically in that it determines our relationships with others, displays our emotions and contributes to our self esteem and confidence,” said Dr. Zak, who is a professor of pain in relation to oral medicine at the Eastman Dental Hospital, University College London Hospitals NHS Foundation Trust. “Pain in the face, especially if as severe as TN, has a huge impact as it interrupts, interferes with life and affects a person’s identity. It is vital to find not only the cause, but also a cure that will restore a person’s quality of life.”
As a doctor struggling to help patients for whom no currently available medical or surgical treatment “cuts it” in making the pain tolerable, she sees the dire need for curative therapy. At her National Center of Excellence, 700 new facial pain patients come through the doors each year, some 10 percent of them with trigeminal neuralgia. And among all the TN patients, Dr. Zak said 10 to 15 percent find it hard to learn strategies for self-managing their pain. These are the men and women whose excruciating pain breaks through all medical efforts to stop it, and so they return to clinic again and again seeking relief. “Recent reports on neuropathic pain in Europe and the UK suggest TN is more common than previously reported, and that it occurs most often in people between ages 50 and 60,” she said. “However, it is still poorly diagnosed and treated, as it is confused with other more common facial pains.”
Updated information on the epidemiology of neuropathic facial pain is expected to be published soon by Dr. Zak and others, as the result of a study funded by the TNA-Facial Pain Association. Since 1998, more than 7,000 survey forms have been completed by association members, making it one of the largest studies of its kind in the world.
She proposes that the chances for achieving a cure in a decade will be enhanced by bringing basic scientists and clinicians to the same meetings where they can listen to each other and learn from each other. She points out, “Some physicians and surgeons confident about the success of their treatments for facial pain do not understand important aspects of facial pain disease that have been discovered and reported by basic scientists.”
“Part of the problem is the language barrier between scientists whose papers are not easy for anyone outside their discipline to understand, and the health-care professionals seeking to improve treatment,” she said. “Those who study TN in the lab and those who treat TN patients may be miles apart in their area of focus, but they need to become aware of each other’s work.
“We who care for patients need to be able to explain to them relevant findings made by basic scientists,” she said. “Increasingly, patients do not just want to be given a diagnosis, reassurance and treatment; they want to understand their condition. There is evidence to show that high quality explanations play a positive role in health outcomes. A knowledgeable patient is much more likely to take control of their pain and manage it.”
During her 20 years in clinical practice, Dr. Zak has encountered longstanding gaps in knowledge of fundamental aspects of facial pain, and has taken steps to fill some of them through clinical research. “As I discovered to my great surprise several years ago, there is no scientific data on the natural history of trigeminal neuralgia,” she said.
In 2007, she began a long-term study to track what happens to each patient year by year to assess how levels of pain and frequency of pain change over time. More than 80 TN patients have already agreed to participate in this study—the first scientifically robust research to document how the pain typically starts and progresses, how the disease changes over time and how the pain impacts patients’ lives. One important question she hopes to answer is whether increasing resistance to commonly prescribed medications for TN is due to the patients becoming less responsive to the drugs over time (sometimes months, sometimes years), or to a progressive worsening of the disease. The study also will provide independent data on the impact of surgical treatments on TN and on quality of life.
To fill another gap that has long existed in the care of facial pain patients, Dr. Zak has over the years tried to measure pain in more specific terms and with better standardized method. Patients coming to her clinic now fill out questionnaires that include a Brief Pain Inventory, to which she recently added six questions developed by Neurosurgeon John Y.K. Lee at the University of Pennsylvania. The questionnaire gives patients a chance to score their levels of pain and to indicate whether and to what extent the pain interferes with their normal work in and outside the home, their sleep, walking ability, relations with other people, and enjoyment of life.
Using a separate Hospital Anxiety and Depression Scale, patients indicate how they feel while in pain or dealing with the fear of pain, providing a partial assessment of emotional aspects such as mood, anxiety, tension and depression. Dr. Zak said more specific tests like these diagnostic questionnaires are designed to help health-care professionals, who have to rely on what patients tell them about their pain.
In her international role with the Foundation, Dr. Zak is tapping into her broad network of medical science colleagues to help find basic scientists eminently qualified and interested in becoming part of the effort to cure neuropathic facial pain. “The search for a cure needs to involve not only scientists who are now focusing on the trigeminal nerve, but also those studying other aspects of nerve injury and recovery and how the brain processes pain signals, who might be persuaded to use the trigeminal nerve as their model for experiments,” she said.
Joanna Zakrzewska, who has concentrated her work on TN for more than 20 years, earned her medical degree at the University of Cambridge and completed specialty training in oral medicine. She spent ten years as a clinical teacher and researcher at Queen Mary’s, University of London where she was awarded a personal chair in 2007. She helped to found and now chairs the medical advisory board for the Trigeminal Neuralgia Association in the UK, and has served 13 years on the medical advisory board for the TNA-FPA in the United States. She is the author of four books on facial pain and 15 book chapters, including a new one on the future of medical treatment for TN in Peter Jannetta’s new (2010) book on trigeminal neuralgia. In addition, she has written some 100 peer-reviewed articles.