Learn about getting a comprehensive orofacial pain evaluation and become an educated patient.
Getting the correct diagnosis for your facial pain is the critical first step towards understanding your condition and receiving proper treatment. The Office of Rare Diseases (ORD) of the National Institutes of Health (NIH) considers trigeminal neuralgia a rare disease. This means that trigeminal neuralgia affects fewer than 200,000 people in the US at any time. This is known as prevalence. The incidence of trigeminal neuralgia, or how many people are newly diagnosed each year, is thought to be 4.3 people per 100,000. Other neuropathic facial pain conditions are also rare. Some people have more than one type of pain, either concurrently (at the same time) or subsequently (one follows the other).
One reason for a poor treatment response is that the causative diagnosis was incorrect. ENT surgeons may diagnose a sinus condition when it is not present. Dentists may consider trigeminal neuropathic pain to be treatable by invasive dental surgery when it should not be. Differentiating between the various types of facial pains and mechanisms associated with neuropathies can sometimes be confusing, especially if the symptoms are complex and don’t fall into any one specific category.
The American Medical Association estimates that primary care physicians might expect to encounter trigeminal neuralgia two to four times over the course of a 35-year career. Doctors and dentists have limited medical training on the topic. If you think your doctor does not know much about neuropathic facial pain, you may be right.
Symptoms related to facial pain can be complex. They may not fall into any one specific category. Some people with neuropathic facial pain are misdiagnosed as having dental or other issues. Commonly, people are misdiagnosed as having a dental or other issue, only to find that they have a neuropathy. Until you have an accurate diagnosis, you may be getting unnecessary and even harmful treatment, and the case of pain is not being addressed.
“Neuropathic” pain requires there to be the presence of a lesion or disease within the neural system. A neuropathy is a disturbance in function or pathological change in a nerve or nerves. Many facial pains mimic a neuropathy, so it is important that there is a systematic approach to determining an accurate diagnosis.
Over the years, the terms used for trigeminal neuralgia have changed, and one doctor will apply these terms differently than another. The cause of classical TN is typically nerve compression by a vessel, usually the superior cerebellar artery on the trigeminal nerve root as it leaves the brain stem. However, in some cases, compressions may not be found. Your description of your pain may not match your diagnosis. You may have an underlying disease causing your pain. Taking all of this into account, an experienced doctor will be able to help you understand your facial pain and provide you with a recommended treatment plan.
The diagnostic classification of classical trigeminal neuralgia from the 3rd edition of The International Classification of Headache Disorders, devised by the International Headache Society, provides one internationally recognized set of TN diagnostic criteria:
Description: Classical trigeminal neuralgia without persistent background facial pain.
Description: Trigeminal neuralgia caused by an underlying disease.
Description: Trigeminal neuralgia with neither electrophysiological tests nor MRI showing significant abnormalities.
Description: Facial pain in the distribution(s) of one or more branches of the trigeminal nerve caused by another disorder and indicative of neural damage (including herpes zoster, postherpetic neuralgia, and post-traumatic neuropathy).
How can you find a healthcare provider who is familiar with trigeminal neuralgia and other trigeminal neuropathic facial pain?
Most facial pain is not neuropathic so a systematic approach to its diagnosis is essential. Non-neuropathic conditions that should be considered in the differential diagnosis include myofascial pain, temporomandibular joint disorder (TMD), dental disease (cavities or gum disease), cracked teeth (with exposed nerve roots), infections including sinusitis, and migraine headache.
Answering the question, “What is this pain?” can be frustrating for patients and doctors alike. Your expectations need to be realistic. A proper diagnosis could take a while. It is time well spent. You cannot treat the condition until you know what it is.
Dr. Derek Steinbacher, Director of Craniofacial Surgery, Yale Medicine, Chief of Oral Maxillofacial Surgery and Dentistry, FPA Medical Advisory Board member, reviews migraines, TMJ disorders, and dental pain.
Dr. Wolfgang Liedtke will discuss medical treatment of trigeminal neuropathic pain with Dr. Jeffrey Brown.
Wolfgang Liedtke, M.D. Ph.D. is Chair of Neurology, Global Development Scientific Council at Regeneron Pharmaceuticals. Prior to that, he was Professor in the Departments of Neurology, Anesthesiology and Neurobiology; Attending Physician, Duke Neurology Clinics and Clinics for Innovative Pain Therapy, serving patients there for over 17 years.
Dr. Mark Linskey, Dr. Richard Zimmerman, and Megan Hamilton discuss what to look for in the decision making process when you are trying to find a doctor and treatment for facial pain.
Dr. Deborah Barrett offers a framework and tools to help people improve their quality of life, just as they are, while also reducing pain and suffering. Her work draws from empirically based cognitive and behavioral interventions, and she practices what she preaches every day.
Dr. Larry Arbeitman will answer: What is Upper Cervical Chiropractic? How does is differ from traditional Chiropractic methods? Learn about the connection between the Upper Cervical Spine and Facial Pain, research and case studies, what you can expect from UCC and how you can integrate it into your healthcare plan. You will also be able to ask Dr. Arbeitman your questions during this live presentation.
In this webinar, Dr. Jeffrey Brown, Chairman of the FPA Medical Advisory Board, talks about the top questions patients and their loved ones have regarding trigeminal neuralgia.
Jennifer M. Wagner, Executive Director of the Western Pain Society, explains the brain-body connection with an emphasis on pain response and provides a list of strategies for those affected by chronic pain.
Dr. Raymond Sekula, Professor of Neurosurgery at the University of Pittsburgh School of Medicine and Director of the Cranial Nerve Disorders Program at UPMC, and FPA Medical Advisory Board member reviews the challenges that can complicate the care of people with neuropathic facial pain.
Complementary health approaches, also referred to as complementary and alternative medicine (CAM), integrative health therapies, and other terms, refers to a group of diverse medical and health care systems, practices, […]
Dr. Jeffrey Brown, Chairman of the Facial Pain Association’s Medical Advisory Board, interviews Dr. Hossein Ansari on medical causes of neuropathic facial pain.
Neuropathic facial pain is diagnosed almost exclusively by the individual’s description of the symptoms. Dr. Kim Burchiel developed a list of questions to help doctors determine exactly which classification may describe a […]
Facial pain can be described in many words…but if you had to choose just one, what would it be? The YPC recently shared how we would describe TN in one word and how we plan to overcome TN.
Dr. Julie Pilitsis, Chair of the Department of Neuroscience & Experimental Therapeutics Professor of Neurosurgery Neuroscience and Experimental Therapeutics, Albany Medical Center and FPA Medical Advisory Board member presents an overview of trigeminal neuralgia and other neuropathic facial pains.
Dr. Konstantin Slavin discusses neuromodulation, a procedure used to treat and enhance quality of life in individuals who suffer severe chronic illness due to persistent pain.
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