Would you recognise trigeminal neuralgia? Trigeminal Neuralgia Association UK (Registered Charity 1093022) PO Box 234 Oxted Surrey RH8 8BE T: 01883 370214 www.tna.org.uk TNA UK Chairman: Jillie Abbott Medical Advisor: Professor Joanna Zakrzewska MD, FDSRCS, FFDRCSI, FFPMRCA 2012 Version 1 Would you recognise trigeminal neuralgia? Introduction no effect at one moment, but five minutes later exactly the same trigger point reacts violently. The initial attack of the horrendous pain is like a lightning bolt, not only in the sudden manner in which it strikes but also because it feels like an electric shock. The first port of call for the stunned sufferer is usually the dentist – despite the fact that the pain feels totally unlike the ‘conventional’ throb of toothache. But because the trigeminal nerve endings link to each tooth, the source of the pain seems to emanate from the teeth. So let us present a fairly typical scenario. A patient complains of severe spasms of pain, and sensitivity. Xrays reveal nothing. There could be several crowned teeth in the general area of the pain; suspicions alight upon one of them. The crown is removed, and an Xray reveals a slightly inflamed root, or not as the case may be. After a course of antibiotics, your patient reports back that there has been no relief. And in your judgment, the level of infection/inflammation does not equate with the level of pain. And that is the first vital clue: the degree of pain exceeds the evidence. The concerned practitioner in all likelihood rarely, if ever, has come across this type of pain. And to complicate matters further, there will be patients who have never experienced toothache of any description, and therefore cannot identify one type from another. Other sufferers may not be sufficiently articulate, or have the language skills to describe their pain accurately, and the situation can be further complicated if either the patient or the clinician do not share the same mother tongue – especially when it comes to colloquial speech. However, even patients with exceptional powers of description will fail to convey their predicament if the dentist has neither the necessary empirical nor theoretical knowledge to recognise any of the vital clues that point to a correct diagnosis of trigeminal neuralgia. The rogue tooth is extracted, or root canal treatment is carried out. Your patient goes home, much relieved. But a few days later, you receive a phone call; the pain is still there, like an amputee’s ‘ghost limb’. You are baffled. Anxious for the well-being of your patient, powerful analgesics are prescribed. They have absolutely no effect. That second vital clue is the most significant one: painkillers do not kill the pain. The dental surgeon might then suggest that perhaps the pain is ‘referred’: the neighbouring tooth is the culprit. This results in another extraction. But the pain does not cease, and that is the third clue. The pain cannot be pinned down to one specific tooth. As extreme and illogical as this may sound, all too often yet another tooth is unnecessarily extracted – often at the insistence of the patient – frantic to alleviate the agony, insisting on having root canal or teeth pulled. There are cases of patients having up to six extractions. But how can one be reasonably certain of correctly diagnosing trigeminal neuralgia (TN)? Initially and most importantly it is essential to listen carefully to what your patient tells you. It has to be said that, due to arrogance, overconfidence or time constraints, many clinicians don’t actually listen with the necessary patience and care, and thereby miss what actually might provide a great deal of information towards an accurate diagnosis. As extreme and improbable as this may seem, a survey of 12,000 face-pain sufferers carried out by a US trigeminal neuralgia association found that half were ultimately diagnosed with TN (or a variant), and all of them had received unnecessary dental procedures. Vital clues Initial warning diagnostic clues: typically only one side of the face is affected, usually the lower part of the face rather than the upper. The pain is provoked by touch or movement, especially eating, talking, or touching the face – even a light breeze can trigger it. Cleaning teeth and washing the face becomes almost impossible. However, moving, or touching the face may have Unfortunately the ordeal of pointless root canals or extractions is not uncommon, and the scenario is not exclusively played out in the dental surgery. All too often variations occur in the general practitioner’s surgery, as well as hospital emergency departments, 1 Would you recognise trigeminal neuralgia? Image ©Ann Eastman What is the cause of TN? where patients are prescribed powerful analgesics and opiates, and recommended to visit their dentist. TN is more common in women, aged 50+, although it is known to affect younger people, and even children. The precise cause of the condition, which is a malfunction in the nerve, is not as yet fully understood. To date, research indicates damage to the root of the nerve at the point where it emerges from the brain stem, causing overreaction to incoming signals by the peripheral nerve. It could also be that the brain stem cells, which receive sensory fibres, have become hyperexcitable, ‘exploding’ when stimulated by ordinary harmless events. Histological studies indicate that this response can be due to a loss of the protective myelin sheath, where the nerve is compressed by a blood vessel. To make matters even more difficult, there are no blood tests or x-rays to aid diagnosis. Clinicians have only the patient’s description, which is why they must be listened to diligently. The pain is not constant. TN is characterised by sudden spasms of utterly excruciating paroxysms pain that feel like electric shocks; sharp lacerating stabs. The spasms come and go abruptly. Typically each one may last from 2 seconds to 2 minutes, up to 10 or even 20 times per day; each one leaving the patient utterly debilitated. TN attacks in completely unpredictable cycles and may cease as abruptly as it commenced, returning weeks, months or even years later. But evidently it always returns. One of the shattering revelations for patients is to know that there is no preventative medication. Fortunately the excitability of the nerve can be blocked by anti-epileptic drugs. Specifically developed to reduce epileptic episodes, which are also caused by hyper ex- 2 Would you recognise trigeminal neuralgia? citability in the brain, these drugs are very effective, although over time they become less so, and the sideeffects can be unpleasant. The patient then has the option of various neurosurgical procedures but, unfortunately, even after travelling down that path, it is not always the road to recovery as the relief may not be permanent. About TNA UK As yet, no cure has been discovered. According to Professor Joanna Zakrzewska, consultant in facial pain, ‘without new infusions of substantive funding for research to find a cure and assist patients, we will not be able to improve the quality of life for patients with trigeminal neuralgia, and related facial pain.’ Based with her team at London’s Eastman Dental Hospital UCLH, Professor Zakrzewska is a worldwide authority on TN and has established a medical advisory board consisting of medical and surgical specialists, all of whom have considerable experience in treating TN. Trigeminal Neuralgia Association UK PO Box 234 Oxted Surrey RH8 8BE TNA UK, is a registered charity and receives absolutely no government funding and is entirely dependent on membership fees and donations. The officers of the Association who all give their time voluntarily, are in contact with more than 1,500 patients, and deal with many enquiries for help and information. Tel: 01883 370214 www.tna.org.uk Further reading: 1. Zakrzewska JM, McMillan R. Trigeminal neuralgia: the diagnosis and management of this excruciating and She is also an advisor to the Trigeminal Neuralgia Association UK, founded in 1999. It offers support and encouragement to TN patients, their families and friends, and provides information on treatments currently available. It also keeps track of any advances being made in the management of this excruciatingly painful and debilitating condition. Another vital part of its work is to raise awareness amongst medical professionals, particularly GPs and dentists, regarding the diagnosis and treatment. TNA UK also has close ties with other support groups internationally including the USA, Australia and Canada. poorly understood facial pain. Postgrad Med J 2011; 87: 410–416. 2. Gronseth G, Cruccu G, Alksne J, Argoff C, Brainin M, Burchiel K, Nurmikko T, Zakrzewska JM. Practice parameter: the diagnostic evaluation and treatment of trigeminal neuralgia (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology and the European Federation of Neurological Societies. Neurology 2008; 71: 1,183–1,190. 3. Zakrzewska JM. Insights , facts and stories behind trigeminal neuralgia. Florida: TNA Association; 2006. 3 The Royal College of Surgeons of England 35 – 43 Lincoln’s Inn Fields, London WC2A 3PE t (020) 7869 6815 f (020) 7869 6816 e [email protected] www.rcseng.ac.uk/fds Registered Charity No. 212808