Management of chronic pain associated with temporomandibular disorders: a clinical practice guideline.

CLINICAL QUESTION: What is the comparative effectiveness of available therapies for chronic pain associated with temporomandibular disorders (TMD)? CURRENT PRACTICE: TMD are the second most common musculoskeletal chronic pain disorder after low back pain, affecting 6-9% of adults globally. TMD are associated with pain affecting the jaw and associated structures and may present with headaches, earache, clicking, popping, or crackling sounds in the temporomandibular joint, and impaired mandibular function. Current clinical practice guidelines are largely consensus-based and provide inconsistent recommendations. RECOMMENDATIONS: For patients living with chronic pain (≥3 months) associated with TMD, and compared with placebo or sham procedures, the guideline panel issued: (1) strong recommendations in favour of cognitive behavioural therapy (CBT) with or without biofeedback or relaxation therapy, therapist-assisted mobilisation, manual trigger point therapy, supervised postural exercise, supervised jaw exercise and stretching with or without manual trigger point therapy, and usual care (such as home exercises, stretching, reassurance, and education); (2) conditional recommendations in favour of manipulation, supervised jaw exercise with mobilisation, CBT with non-steroidal anti-inflammatory drugs (NSAIDS), manipulation with postural exercise, and acupuncture; (3) conditional recommendations against reversible occlusal splints (alone or in combination with other interventions), arthrocentesis (alone or in combination with other interventions), cartilage supplement with or without hyaluronic acid injection, low level laser therapy (alone or in combination with other interventions), transcutaneous electrical nerve stimulation, gabapentin, botulinum toxin injection, hyaluronic acid injection, relaxation therapy, trigger point injection, acetaminophen (with or without muscle relaxants or NSAIDS), topical capsaicin, biofeedback, corticosteroid injection (with or without NSAIDS), benzodiazepines, and ß blockers; and (4) strong recommendations against irreversible oral splints, discectomy, and NSAIDS with opioids. HOW THIS GUIDELINE WAS CREATED: An international guideline development panel including patients, clinicians with content expertise, and methodologists produced these recommendations in adherence with standards for trustworthy guidelines using the GRADE approach. The MAGIC Evidence Ecosystem Foundation (MAGIC) provided methodological support. The panel approached the formulation of recommendations from the perspective of patients, rather than a population or health system perspective. THE EVIDENCE: Recommendations are informed by a linked systematic review and network meta-analysis summarising the current body of evidence for benefits and harms of conservative, pharmacologic, and invasive interventions for chronic pain secondary to TMD. UNDERSTANDING THE RECOMMENDATION: These recommendations apply to patients living with chronic pain (≥3 months duration) associated with TMD as a group of conditions, and do not apply to the management of acute TMD pain. When considering management options, clinicians and patients should first consider strongly recommended interventions, then those conditionally recommended in favour, then conditionally against. In doing so, shared decision making is essential to ensure patients make choices that reflect their values and preference, availability of interventions, and what they may have already tried. Further research is warranted and may alter recommendations in the future.

Management of trigeminal neuralgia: A multi-centre case study in general practice.

Background and aims: Patients often first present with symptoms of trigeminal neuralgia (TN) to primary care. However, there has been little research to determine whether the diagnosis and management of this condition is carried out according to current guidelines. Furthermore, there is little up-to-date information regarding the prevalence of TN in the UK. The aim is to estimate the prevalence of TN and to audit the diagnosis and management process of TN in primary care. Methods: Between 2019 and 2020 a search was made at five UK GP practices with a total patient population of 55,842 using EMIS and SystmOne patient record systems to review patient consultations to identify patients coded with TN or facial pain (FP). These records were reviewed to ascertain the basis for diagnosis, management in primary care and referral to secondary care. Results: 157 patients were identified; 54 coded with FP and 103 with TN. These results indicate a prevalence of 22.3 in 10,000. There was no difference in documented symptoms between the two groups. Seven patients had all ICDH3 criteria recorded, with two meeting the requirements for TN diagnosis. 58.8% of patients with TN were started on carbamazepine, the current gold standard treatment, compared with 16.7% in the FP group. 38.2% of TN patients were referred to a range of different specialities. Conclusion: The prevalence of TN may be higher than previously thought. Key diagnostic criteria are often omitted, leading to potential misdiagnosis or delays in diagnosis. Relatively few referrals are made, though all patients should be considered for imaging.

Guidelines for the management of trigeminal neuralgia.

Guidelines for the diagnosis and treatment of patients with trigeminal neuralgia (TN) advocate for a multidisciplinary team approach to improve the care of patients with acute and chronic TN. Evidence-based discussions and decisions are encouraged to establish care pathways for prompt diagnosis and treatment, and long-term outcomes data collection to improve care. The guidelines include summary materials for patients to inform them about their condition and available treatments.

An international Delphi survey and consensus meeting to define the core outcome set for trigeminal neuralgia clinical trials.

BACKGROUND: Trigeminal neuralgia (TN) is an excruciating unilateral facial pain, which negatively affects patient's quality of life. Historically, it has been difficult to compare treatment efficacy due to the lack of standardized outcomes. In addition, patients' perspective has seldomly been acknowledged. The aim of this study was to reach consensus on what outcomes of treatment are important to different TN stakeholders (patients, clinicians and researchers), to identify the TN Core Outcome Set (TRINCOS). METHODS: A list of outcomes identified through a systematic review and focus group work was used to develop the survey questionnaire. A three-round Delphi was conducted. Participants were asked to score the outcomes on scale from 1 to 9 (1-3 not important;4-6 important but not critical;7-9 critical). Outcomes scored as critical by ≥70% and not important by <15% were retained, and those for which no consensus was reached were discussed at a consensus meeting. RESULTS: Of the 70 participants who completed the Delphi, 26 were patients, 38 were clinicians and six were researchers. Of the 40 outcomes presented, 17 were scored as critical and no consensus was met for 23 outcomes. Agreement was reached during a consensus meeting on 10 outcomes across six domains (pain, side effects, social impact, quality of life, global improvement, and satisfaction with treatment). CONCLUSION: Implementation of TRINCOS in future clinical trials will improve homogeneity of studies' results, reduce the redundancy in the outcome assessment and effectively allow comparison of different treatments to better inform researchers, clinicians and most importantly patients, about the efficacy of the different treatments. SIGNIFICANCE: Implementation of a 10-item core outcome set in trigeminal neuralgia will improve comparability between studies allowing patients to have faster access to better treatments.

"They Could Have Cut My Head Off and I Wouldn't Have Cared"-A Qualitative Study of Patient Experiences and the Impact of Trigeminal Neuralgia.

AIMS: To understand, from the patient perspective, the meaning of living with trigeminal neuralgia (TN) and what the patient-desired outcomes of treatment are. METHODS: A qualitative study involving focus group work with 14 participants with a diagnosis of TN was conducted. The discussions were recorded and transcribed verbatim and analyzed using framework analysis. RESULTS: Four themes and 14 subthemes were identified. Theme 1 reflects the uncertainty about TN etiology and prognosis; theme 2 includes descriptions of the mental, social, and physical impacts of TN that contrast with coping mechanisms developed over time; theme 3 reflects participants' views of what a successful treatment means and the specific outcomes they expect following treatment, as well as patient willingness to self-manage their conditions while supported; and theme 4 highlights the importance of appropriate and timely access to health care and the importance of peer support. CONCLUSION: This study confirms the need to move beyond the biologic models of disease to patient-centered care and research approaches.

Long term evaluation of a multidisciplinary trigeminal neuralgia service.

BACKGROUND: Trigeminal neuralgia is an episodic severe neuralgic pain and can be managed both medically and surgically. If possible, this should be directed by a Multidisciplinary Team (MDT) of specialised surgeons, physicians, dentists, psychologists and specialist nurses with access to all treatment modalities, which enables patients to make an informed decision about their future management. OBJECTIVE: The aim of this study was to review the outcomes of patients managed by an MDT clinic, in a single institute over an eleven-year period. METHODS: A prospective database was used to identify patients with trigeminal neuralgia or its variants who had attended a joint MDT clinic. The electronic notes were examined for demographics, onset and duration of trigeminal neuralgia, medications history, pain scores and details of surgical procedures if any by two independent assessors. RESULTS: Three hundred thirty-four patients attended the MDT between 2008-2019. Forty-nine of them had surgery before being referred to the service and were included but analysed as a subgroup. Of the remaining patients, 54% opted to have surgery following the MDT either immediately or at a later date. At the last reported visit 55% of patients who opted to have surgery were pain free and off medications, compared to 15.5% of medically managed patients. Surgical complications were mostly attributable to numbness and in the majority of cases this was temporary. All patients who were not pain free, had complications after surgery or opted to remain on medical therapy were followed up in a facial pain clinic which has access to pain physicians, clinical nurse specialists and a tailored pain management program. Regular patient related outcome measures are collected to evaluate outcomes. CONCLUSION: An MDT clinic offers an opportunity for shared decision making with patients deciding on their personal care pathway which is valued by patients. Not all patients opt for surgery, and some continue to attend a multidisciplinary follow up program. Providing a full range of services including psychological support, improves outcomes.

Exploring patient satisfaction of a joint-consultation clinic for trigeminal neuralgia: Enabling improved decision-making.

Background: Trigeminal neuralgia (TN) is a relatively rare condition which has a profound impact not only on the patient but also on those around them. There is no cure for TN, and the management of the condition is complex. The most effective forms of treatment are either through medication, neurosurgery, or combination of the two. Each option has risks and implications for the patient. As with all clinical decisions, it is important for patients to understand and be fully informed of the treatments available to them. A London UK unit adopted a joint-consultation clinic approach where the patient meets with both physician and neurosurgeon at the same time to discuss treatment options. The purpose of this evaluation is to understand patients' level of satisfaction with the joint-consultation clinic and evaluate utilisation of a clinical decision-making tool. Method: Patients who had attended the joint-consultation clinic over a period of 12 months were invited to participate in a telephone or paper survey (N = 55). Responses were analysed using descriptive statistics and thematic analysis. Results: Forty-one patients (77% response rate) participated in the survey, and the results were overwhelmingly positive for the joint-consultation clinic regarding satisfaction. The benefits were broad ranging including increased understanding, collaboration and confidence in decision-making. Conclusions: A joint-consultation clinic comprising a neurosurgeon and a physician for the treatment of TN is valued by patients who become better informed and able to make decisions about their care. Positive application of clinical decision-making aids in this situation offers potential across specialities.

Evaluation of About Face: A Psychology and Physiotherapy Pain Management Program for Adults with Persistent Facial Pain.

AIMS: To evaluate About Face, a pain management program aimed at increasing quality of life in adults living with persistent facial pain through psychology- and physiotherapy-based skill development. METHODS: A total of 90 patients attended a six-session program with a 1-month follow-up between 2015 and 2019. Patients filled out self-reported outcome measures preprogram, postprogram, and at a 1-month follow-up visit. RESULTS: There was a significant reduction in pain catastrophizing and a significant increase in engagement in meaningful activity, as well as a reduction in pain-related interference. CONCLUSION: This evaluation adds to the small amount of existing literature on interventions aimed at increasing quality of life in patients living with persistent facial pain and provides suggestions for future research.

The journeys of patients with trigeminal neuralgia on a background of multiple sclerosis.

Aim: Multiple sclerosis (MS) is well recognized as a secondary cause for trigeminal neuralgia (TN). In this case series, we detail the management of all the patients with TN and MS (pwTNMS) presenting to a specialist unit. Materials & methods: A prospective patient database was used to extract key clinical data on pharmacological, psychometric and surgical management of 20 pwTNMS. Results: 65% of pwTNMS underwent surgical interventions for management of their pain.12/20 achieved remission periods, through surgery and/or medication. Significant improvement was noted on the global impression of change illustrated by a p < 0.001. Conclusion: pwTNMS require a multifaceted approach combining polypharmacy, surgical interventions and psychological support. Developing self-management skills is crucial if patients are to live well with pain.

Lay abstract Aim: Multiple sclerosis (MS) is understood to be the leading secondary cause for the development of trigeminal neuralgia (TN). Very little is known about how this group of patients are managed, in terms of the medication and surgical treatments used. In this study we follow the journey of all the patients with TN and MS (pwTNMS) presenting to the same multidisciplinary (several specialists) unit, detailing their management and impact on the quality of life. Materials & methods: Data were collected on 20 pwTNMS on what types of medication and surgical treatments were undertaken to try and manage their pain. Results: A total of 65% of pwTNMS underwent one or more surgical treatments for management of their pain. Twelve patients achieved periods of being pain free, through surgery and/or medication. There was significant improvement noted on the global impression of change in pain. Pain catastrophizing scores remained high, suggesting many patients remained fearful and worried regarding their pain. Conclusion: TN in patients with MS can be very challenging to manage, often necessitating a more complex approach to treatment involving a combination of medication, surgery and psychological support, to achieve better management of their pain. Multiple medications are often used in an attempt to reduce adverse drug side effects. Patients, are likely to undergo frequent surgical procedures. A multidisciplinary approach encouraging self-management is crucial if patients are to live well with their pain and improve prognosis.

Patient reported outcome measures in trigeminal neuralgia - A systematic review of psychometric performance.

BACKGROUND: Trigeminal neuralgia (TN) is a rare condition for which there are multiple treatment options available. To date, there has been difficulty in comparing the outcomes of treatment due to the variety of patient-reported outcome measures (PROMs) and their inadequate psychometric testing. The aim of this review was to assess the psychometric properties of PROMs used to date in TN and make recommendations for their use in future studies. METHODS: Five electronic databases (MEDLINE, EMBASE, CINAHL Plus, PsycINFO, Health and Psychosocial Instruments) were searched for studies assessing the development of PROMs or their psychometric properties in TN studies. The records obtained were assessed independently by two reviewers for their methodological quality, following guidance from the Consensus-based Standards for the selection of Health Measurement Instruments (COSMIN). RESULTS: Six studies were identified and information on five PROMs (Brief Pain Inventory Facial (BPI-F), Visual Analogue Scale (VAS), Barrow Neurology Institute Pain Scale (BNI-PS), Penn Facial Pain Scale-Revised (Penn-FPS-R) and Trigeminal Neuralgia Quality of Life Score) were retrieved. The Penn-FPS-R demonstrated moderate quality evidence for sufficient content validity. The BPI-F showed moderate evidence for sufficient internal consistency and structural validity but low evidence for inconsistent content validity. The Trigeminal Neuralgia Quality of Life score showed very low-quality evidence for insufficient content validity, structure validity and responsiveness. No evidence was found on the assessment of any psychometric properties of the VAS and BNI-PS in TN. CONCLUSION: There is limited evidence of the psychometric performance of patient-reported outcomes for TN and recommendations for their inclusion in future studies cannot be made. The validation of PROMs in TN studies should be a priority in this field of research. SIGNIFICANCE: This review highlights the knowledge gap in the field of psychometrics of patient reported outcomes measures in the field of TN. Given the unavailability of an objective outcome measure for pain or health related quality of life, psychometrically sound PROMs are essential for assessing medical and surgical treatment outcomes in TN.

Cognitive Behavioral Therapy for Patients with Trigeminal Neuralgia: A Feasibility Study.

AIMS: To test the feasibility and acceptability of a customized six-session cognitive behavioral therapy (CBT) group intervention for adults with recurrent trigeminal neuralgia (TN). METHODS: Fifteen participants with TN were recruited from a specialist facial pain unit in London, United Kingdom. The effects of the group intervention were evaluated using validated self-report measures, which the participants completed before and after the intervention and at 1-month and 9-month follow-ups. A semi-structured interview was also used at the 1-year follow-up to gather qualitative feedback of the group intervention. RESULTS: Participants reported an increase in confidence in managing everyday tasks in the presence of TN symptoms, a reduction in negative beliefs about pain, and an increase in engagement in meaningful activity. All patients completed the group intervention (100% retention rate). Qualitative feedback highlighted that the group CBT intervention was helpful, and no participants reported a worsening of mood or experience as a result of the intervention. CONCLUSION: The trends for improvement in several domains, plus the positive experiences of the participants, suggest that a CBT management program is acceptable and feasible for this population and should be further developed and implemented on a larger scale to determine its clinical efficacy.

Burden of illness of trigeminal neuralgia among patients managed in a specialist center in England.

BACKGROUND: Trigeminal neuralgia (TN) causes severe episodic, unilateral facial pain and is initially treated with antiepileptic medications. For patients not responding or intolerant to medications, surgery is an option. METHODS: In order to expand understanding of the pain-related burden of illness associated with TN, a cross-sectional survey was conducted of patients at a specialist center that utilizes a multidisciplinary care pathway. Participants provided information regarding their pain experience and treatment history, and completed several patient-reported outcome (PRO) measures. RESULTS: Of 129 respondents, 69/128 (54%; 1 missing) reported no pain in the past 4 weeks. However, 84 (65%) respondents were on medications, including 49 (38%) on monotherapy and 35 (27%) on polytherapy. A proportion of patients had discontinued at least one medication in the past, mostly due to lack of efficacy (n = 62, 48%) and side effects (n = 51, 40%). A total of 52 (40%) patients had undergone surgery, of whom 30 had microvascular decompression (MVD). Although surgery, especially MVD, provided satisfactory pain control in many patients, 29% of post-surgical patients reported complications, 19% had pain worsen or stay the same, 48% were still taking pain medications for TN, and 33% reported new and different facial pain. CONCLUSIONS: In most PRO measures, respondents with current pain interference had poorer scores than those without pain interference. In the Patient Global Impression of Change, 79% expressed improvement since beginning of treatment at this clinic. These results indicate that while the multidisciplinary approach can substantially alleviate the impact of TN, there remains an unmet medical need for additional treatment options.

The role of a clinical nurse specialist in managing patients with trigeminal neuralgia.

BACKGROUND AND AIMS: Patients with trigeminal neuralgia (TN) can be overwhelmed with information they are given when first seen in a specialist secondary care clinic. The purpose of this study is to evaluate the extent to which a telephone service provided by the clinical nurse specialist (CNS) with independent prescribing rights improves patient management and satisfaction and reduces costs. METHODS: All patients with a diagnosis of TN who used the CNS telephone service in 2015 were contacted by two medical students (independent observers) using a semi-structured questionnaire. Patients who could not be contacted were sent the same questionnaire and asked to return it by post. RESULTS: Fifty-two patients were identified and 34 replied to a telephone call and 10 to a questionnaire, response rate 85%. Overall, 61% of patients rated their care outstanding or excellent. Four patients could not remember their consultation, others had used it on multiple occasions. Reasons for the consultation were pain management 50%, changeover of drugs 25%, advice about drug schedules 17%, and dealing with side effects 8%. The number of general practitioner (GP) consultations decreased as a result of this service. Patients suggested that the service should be available more than once a week. CONCLUSION: The CNS telephone service cut down on the number of outpatient appointments needed and reduced travel costs. Patients were appreciative that the CNS was in contact with GPs and this ensured prescriptions were filled in a timely manner and strengthen links with practices.

Design of Phase 3 Studies Evaluating Vixotrigine for Treatment of Trigeminal Neuralgia.

PURPOSE: Vixotrigine (BIIB074) is a voltage- and use-dependent sodium channel blocker. These studies will evaluate the efficacy and safety of vixotrigine in treating pain experienced by patients with trigeminal neuralgia (TN) using enriched enrollment randomized withdrawal trial designs. PATIENTS AND METHODS: Two double-blind randomized withdrawal studies are planned to evaluate the efficacy and safety of vixotrigine compared with placebo in participants with TN (NCT03070132 and NCT03637387). Participant criteria include ≥18 years old who have classical, purely paroxysmal TN diagnosed ≥3 months prior to study entry, who experience ≥3 paroxysms of pain/day. The two studies will include a screening period, 7-day run-in period, a 4- or 6-week single-dose-blind dose-optimization period (Study 1) or 4-week open-label period (Study 2), and 14-week double-blind period. Participants will receive vixotrigine 150 mg orally three times daily in the dose-optimization and open-label periods. The primary endpoint of both studies is the proportion of participants classified as responders at Week 12 of the double-blind period. Secondary endpoints include safety measures, quality of life, and evaluation of vixotrigine population pharmacokinetics. CONCLUSION: There is a need for an effective, well-tolerated, noninvasive treatment for the neuropathic pain associated with TN. The proposed studies will evaluate the efficacy and safety of vixotrigine in treating pain experienced by patients with TN.

Cognitive and sensorimotor function in participants being treated for trigeminal neuralgia pain.

BACKGROUND: Trigeminal neuralgia (TN) is an orofacial condition defined by reoccurring, spontaneous, short-lived but excruciating stabbing pain. Pharmacological interventions constitute the first-line treatment for TN, with antiepileptic drugs commonly prescribed. People treated for TN pain with antiepileptic drugs describe cognitive and motor difficulties affecting activities of daily living, and report poorer quality of life. We undertook the first comprehensive objective evaluation of sensorimotor and cognitive performance in participants being treated for TN pain with antiepileptic drugs relative to age-matched controls. METHODS: Participants (43 TN, 41 control) completed a battery of sensorimotor (steering, aiming and tracking) and cognitive (working memory, processing speed, inhibition) tasks. RESULTS: The TN group performed significantly worse than controls on the sensorimotor tracking and aiming tasks and across all cognitive measures. CONCLUSIONS: The data explain why patients treated with antiepileptic drugs report impairment when conducting activities of daily living (given the need for cognitive and motor capability within most of these). The study is an important first step in: (i) ensuring there is adequate information on the impact of pharmacological treatment; (ii) identifying measures to determine optimal medication dosage and track change over time; (iii) creating an evidence base that could allow scientific justification of alternative pain treatment options for TN (e.g. the costs/benefits of surgery).

Treatment Outcomes in Trigeminal Neuralgia-A Systematic Review of Domains, Dimensions and Measures.

BACKGROUND: Trigeminal neuralgia (TN) is a painful disorder characterized by sudden electric shock-like pain. It is a rare condition for which multiple treatments are available, including medical and surgical. The best treatment option is yet to be defined, and this is related to the lack of definition in the treatment outcomes and outcome measures. The aim of this systematic review was to summarize all the outcomes and outcomes measures that have been published to date and highlight variability in their use. METHODS: We have conducted a literature search using a wide range of databases (1946-2019 for medical and 2008-2019 for surgical treatment), for all intervention studies in TN. Four hundred and sixty-seven studies were selected for data extraction on TN classification, data collection method, intervention, and treatment outcomes mapped to the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT guidelines). RESULTS: Most studies collected data on pain (n = 459) and side effects (n = 386) domains; however, very few collected data on the impact of treatment on physical (n = 46) and emotional functioning (n = 17) and on patient satisfaction (n = 35). There was high variability on outcome measures used for pain relief (n = 10), pain intensity (n = 9), and frequency of pain episodes (n = 3). CONCLUSIONS: A clear definition of what are the important outcomes for patients with TN is essential. The choice of standardized outcome measures allowing for consistent reporting in TN treatment will allow for comparison of studies and facilitate treatment choice for patients and clinicians thus, improving health outcomes and reducing health care cost.

Trigeminal neuralgia: Comparison of characteristics and impact in patients with or without multiple sclerosis.

OBJECTIVES: The commonest secondary cause for trigeminal neuralgia (TN) is multiple sclerosis (MS) and little is known about this group of patients in terms of their presentation and treatments. We compared patients with TN and MS (pwTNMS) with a cohort of patients with primary TN, who had been referred to the same specialist unit, both in terms of characteristics and impact on quality of life at the time of their first assessment. METHODS: Using a prospective patient database we extracted key clinical data and results from psychometrically tested questionnaires of 26 pwTNMS and compared them to an age and gender-matched set of 68 patients with primary TN. RESULTS: Our findings suggest that pwTNMS exhibit a more severe clinical phenotype than primary TN. Prior to referral, pwTNMS are more likely to have used more healthcare services and undergone more neurosurgical interventions. Strikingly, pwTNMS exhibit reduced lengths and duration of remission periods and fewer identifiable triggers. Furthermore, pwTNMS report significant impact on quality of life comparable to those in primary TN, scoring highly in measures of anxiety, depression, and catastrophizing, but also report greater sleep disturbance, and overall interference in activities of daily living. CONCLUSIONS: pwTNMS have a more intractable TN, one which may necessitate a more complex approach to treatment, earlier referral to secondary care and an extensive assessment of mental health. Quality of life in pwTNMS is severely affected by both their MS and their TN, suggesting management should occur in specialist centres with access to a multidisciplinary team.

Visual Imagery: A Tool to Explore the Impact of Burning Mouth Syndrome.

AIMS: To investigate how photographic images (Pain Cards) co-created by an artist and chronic pain patients could be used in groups of patients with burning mouth syndrome to facilitate characterization of their pain and its impact on quality of life. METHODS: Ten groups of patients with burning mouth syndrome attending a 2.5-hour information session in a facial pain unit were presented with 54 Pain Cards put in a random order on a table. They were asked to pick one card that described the quality of their pain and one that reflected the impact of the pain on their lives. The total number of patients was 119 (divided into groups of 8 to 14) over a 4-year period. RESULTS: A total of 114 patients chose a Pain Card; 24 cards (chosen a total of 73 times) were used to phenotype the pain and 39 cards (chosen a total of 127 times) were used to describe the impact of the pain. The most frequently used Pain Card (13 times) was a pair of lips closed with a clothes peg, whereas the other most frequently selected images were black and white. The choice of Pain Card and words used to explain the choice implied a neuropathic type of pain. Themes that were common included those of isolation, loss of confidence, low mood, and decrease in activities and socialization. CONCLUSION: The Pain Cards chosen and the main themes support those found in the literature on BMS. The Pain Cards may help pain sufferers gain more empathy and support due to improved understanding by their health care providers.

Long-term pain relief at five years after medical, repeat surgical procedures or no management for recurrence of trigeminal neuralgia after microvascular decompression: analysis of a historical cohort.

BACKGROUND: Management strategies for the recurrence of trigeminal neuralgia after microvascular decompression include repeat procedures, medical management or no further therapy. No consensus exists as to which strategy is best for pain relief. The aim of this study was to determine the characteristics of patients with recurrences after microvascular decompression in the cohort, and to compare long-term pain relief between different management strategies. MATERIALS AND METHODS: A historical cohort of patients who underwent microvascular decompression at a neurosurgical institution between 1982-2002, followed up by postal survey at five years, was included. Characteristics of patients who experienced a recurrence were compared to those who were recurrence free, and pain relief was compared between each management strategy. RESULTS: From 169 responders who were included in the study, 28 (16.6%) experienced a recurrence after MVD. No characteristics were significantly different between patients who experienced a recurrence and those who did not. Repeat procedures, including repeat microvascular decompression, partial sensory rhizotomy or radiofrequency thermocoagulation, yielded the highest proportion of pain relief after recurrence (p = 0.031), with 63.6% of patients pain-free at five-years. There was no evidence to suggest that the choice of repeat procedure influenced the likelihood of pain relief after recurrence. No further treatment yielded 57.1% pain-free, whereas medical therapy had the lowest proportion of pain-free patients, at 10.0%. CONCLUSION: A variety of options are available to patients for recurrence of TN after microvascular decompression with repeat procedures yielding the greatest likelihood of long-term pain relief in this historical cohort. The choice of management should consider the mechanism of recurrence, the benefits and risks of each option and the severity of the pain. Regardless of the management strategy selected, careful phenotyping of patients before and after surgery is paramount.