Lessons learned from the orofacial pain clinic

Author: Nathan Moreau
Associate Professor in Oral Medicine, Oral Surgery and Orofacial Pain, Department of Dental Medicine, Bretonneau Hospital, Paris, France

Corresponding author: Dr Nathan Moreau, Associate Professor in Oral Medicine, Service de Médecine Bucco-Dentaire, Hôpital Bretonneau, 23 rue Joseph de Maistre 75018 Paris, France
Email : nathan.moreau@u-paris.fr

Abstract: The author describes and discusses ten categories of presenting symptoms and patient care with the discipline of orofacial pain resulting from eight years of experience running an orofacial pain clinic.

INTRODUCTION

Orofacial pain is a complex and intriguing field, often unfathomed by both dental and medical healthcare professionals. As the most frequent reason for consultation in general and dental medicine, pain can stem from numerous local, locoregional and systemic aetiologies, requiring an extensive diagnostic workup of the orofacial region and beyond.1-2 Such workup is somewhat reminiscent of those performed in internal medicine departments as it requires significant knowledge in both the numerous dental subspecialties (endodontics, periodontics, oral pathology, TMJ pathology, jaw diseases…) and medical specialties (haematology, rheumatology, infectious diseases, ENT diseases…).2 Conversely, as a field insufficiently explored and practiced, much can be learned directly from our orofacial pain patients. 

My first professional encounter of an orofacial pain patient occurred during a night shift as a young intern. At the time, I had a limited textbook-only knowledge of a few orofacial pain conditions and was thus quite befuddled when faced with this 50+ year-old female patient who suffered from excruciating electric shock-like attacks in the right side of her face. Although presenting as a textbook case of trigeminal neuralgia, the previous specialists she had seen did not seem to entertain such a diagnosis and were unfortunately unable to provide her with an effective treatment (16 pills a day she recalled, and no relief at all). In the end, carbamazepine was indeed the solution she had been waiting for.

Fast forward a few years. I am being referred, here and there, a few cases of patients with undiagnosed orofacial pain by colleagues who have heard of my growing interest in this field. Few became many, and the need for dedicated clinical time and resources started to grow. In September 2016, we launched the first orofacial pain clinic of our department. After three years and almost 400 new patients, many lessons have been learned from said patients, allowing us to progress in such, unfortunately uncharted, territory. I would like to share ten of them.

1 – Chronic orofacial pain most often affects happy and otherwise healthy patients

A frequent and very unfortunate misconception about chronic pain patients is that they are often whiny, psychologically unstable, difficult to manage, high maintenance patients. As such, when I started contemplating the idea of opening an orofacial pain clinic, many well-wishing colleagues were quite keen in warning me about the foolishness of such endeavour. Somehow, this did not deter me. The reality was quite the opposite. Although, some patients do suffer from severe anxiodepressive comorbidities or other psychological ailments, I have actually been quite surprised by the positiveness and overall cheerfulness of most chronic pain patients. This is even more impressive when one considers that most of them have been suffering daily without a diagnosis or effective treatment for up to 20 years! Furthermore, most of our patients seem to have few significant comorbid medical issues, suggesting that many orofacial pain conditions (even the severe ones) are standalone diseases -dark clouds in a perfect sky- requiring a thorough diagnostic workup, even in a young healthy-looking patient.

2 – It is never too late to treat a chronic orofacial pain patient

It is becoming evident that persistent untreated pain can lead to neuroplastic changes in the central nervous system, following a neurobiological process called central sensitisation. Although still an emerging field of study, empirical evidence strongly suggests that painful conditions become harder to treat when treated tardily. Thus, when faced with a patient suffering from 20 years of untreated (or ineffectively treated) pain, one could be, quite logically, pessimistic regarding the ability to relieve such suffering.

Interestingly, not all painful conditions become resistant to treatment with time, especially in cases of misdiagnosed conditions. For instance, we once received a 52-year-old female patient who had been suffering from undiagnosed chronic hemicrania continua for 20 years that still presented the classical ‘absolute’ response to indomethacin 20 years later!3 Consequently, it seems judicious to always stay hopeful regarding one’s capacity to treat a chronic painful condition no matter the diagnostic (and treatment) delay.

3 – Sometimes its serious

Most painful conditions encountered in our orofacial pain clinic are benign (albeit chronic), mainly musculoskeletal diseases or primary headaches. Unfortunately, not all patients are this lucky, as pain can be a harbinger of numerous severe ailments such as coronary artery disease, cancer, stroke, or other brain diseases (meningiomas, multiple sclerosis and others).4

Our clinic has been fraught with several examples of such misfortune: a 80-year-old female patient with a burning tongue secondary to an undiagnosed meningioma, several patients with post-stroke central pain presenting in the facial region, or a 35-year-old male patient with atypical trigeminal neuralgia indicative of undiagnosed multiple sclerosis.5 If we are to diagnose such cases early, a thorough clinical examination and a touch of paranoia will go a long way. 

4 – When you have eliminated the impossible, whatever remains, however improbable, must be the truth

In many respects, medical diagnosis and detective work are surprisingly similar. It comes as no surprise that such an aphorism was held as a personal maxim by the most famous detective Sherlock Holmes (first mentioned in the novel The Sign of the Four [Chapter 6] and subsequently in numerous other adventures). After all, his creator Sir Arthur Conan Doyle, a medical doctor, based said detective and his famous methods on the real deductive skills of Doyle’s mentor Dr Joseph Bell.

Although we are taught to look for the evident first when diagnosing patients (a corollary of Ockham’s razor: the simplest explanation is most often the best one), tertiary clinics hold an intrinsic bias, easily recruiting the rare and bizarre cases (the easy ones being diagnosed without the need for specialised consultations). Therefore, in such clinical setting, one cannot exclude a diagnosis just because of its rarity (‘it’s a long shot’) especially if ‘it fits’ (to paraphrase another famous TV-series doctor). For instance, in our clinic, we have had six confirmed cases of paroxysmal hemicrania or hemicrania continua, diseases observed in approximately 1/8000 to 1/30000 patients. Rare does not mean impossible.       

5 – Balint was right…

Michael Balint (1896-1970) was a British Hungarian-born psychiatrist and psychoanalyst, most famous for his creation of ‘Balint Groups’, discussion meetings between medical doctors aimed to share relevant professional experiences, to improve global patient care.  

He often liked to refer to what he called: “the drug ‘Doctor’”, more aptly put: “The doctor himself is the most frequently prescribed medication.” With such concept, he tried to convey the idea that the patient/doctor encounter is a powerful therapeutic, often more so than drugs. This is most compelling and relevant in the field of pain, a complex symptom with numerous psychological and cognitive entanglements.

Sometimes, genuine and attentive listening is a major first step in the treatment of chronic orofacial pain patients, especially for those who have been ignored or even belittled by unfamiliar and/or unconvinced practitioners. I have personally seen the positive and therapeutic effects of simple, authentic listening of a patient’s story without judgement or incredulity. I remember a middle-aged Italian woman, with an unfortunately-misdiagnosed case of trigeminal neuralgia, who after receiving my diagnosis and associated explanations, left the consult with her prescription and the following comment: “I leave, still in pain but much relieved.”   

6 – … and so was Osler.

Sir William Osler, the father of modern medicine, was known for his pithy Wildesque aphorisms, that helped shape the face and future of medical education. One of his famous quotes on clinical medicine admonished the following: “Listen to your patient, he is telling you the diagnosis.”. A common variation goes even further: “Listen to your patient, he is *screaming* you the diagnosis.”.

Pain is a complex sensation and patients are often at a loss when it comes to describe what they are feeling and where exactly they are feeling it. Nevertheless, this does not mean that they cannot help us narrow down the exact location and cause of pain. A 40-year-old female patient came to our clinic with pharmacoresistant post-traumatic neuropathic pain following multiple endodontic surgeries of teeth 11 and 12. As all treatments were ineffective or not tolerated, we opted for iterative ropivacaine nerve blocks to ease the pain. Unfortunately, the injections only seemed to numb “around the painful region”, and despite multiple attempts, no significant improvement was obtained. One day, this changed. It seemed like any other consultation where she explained for the umpteenth time where she was feeling her burning pain (“I feel the pain in my nose.”). But somehow, this time, I got it. It was not in the maxilla as I had understood but much higher in the nasal floor (the neuropathy seemed to stem from an injured naso-palatine nerve and not from a terminal branch of the supero-anterior alveolar nerve as previously surmised). Transnasal infiltration of the naso-palatine nerve was attempted and brought complete pain relief for the first time in the patient’s history. “I told you so.”.

7 – Its all neurobiology

Pain is a complex sensation, incorporating sensory-discriminative, affective, emotional, cognitive, behavioural, and autonomic dimensions, all integrated within an intricate neural network: the ‘pain matrix’.2 From a clinical standpoint, painful patients often present concurrent somatic and psychological ailments with a sometimes-equivocal relationship between the two. As most chronic pain patients seeking a consultation often present with anxiety or depression it is tempting for misguided practitioners to ascribe the pain to such psychological/psychiatric ailments. This erroneous conception is unfortunately reinforced by the fact that as the patient’s mood improves, often so does the pain. This in term can lead to much ‘psychologisation’, especially for nociplastic painful conditions (a type of pain resulting from erroneous central processing within the pain matrix, without any structural lesions to tissues or nerves6). As a result, several invalidating painful conditions are considered somatoform expressions of unresolved trauma, guilt, boredom, etc. or even malingering. Such patients are invited to seek help from a mental health professional, thus totally omitting the ‘somatic’ aspect of the disease and the possibility of appropriate treatment (especially in neuropathic pain conditions where anxiety and/or depression are a consequence of the pain and not its cause).

In my experience, one disease epitomises such complex issue: Burning Mouth Syndrome. Oral surgeons and dermatologists often consider it a ‘functional’ or psychosomatic illness (after all, there is nothing to be seen upon clinical examination, they say). Psychiatrists/ psychoanalysts concur, ascribing it to problems linked with the Freudian notion of orality.

Personally, I have no trouble conceptualising a disease from multiple perspectives, but the issue is that psychotherapy just doesn’t seem to work (it can be helpful, but not enough). The reason for that, in my opinion, is that doctors have been looking at it the wrong way, dismissing a simple but potent notion: It’s all neurobiology!

From a pathophysiological standpoint, all painful issues stem from neurological lesions, abnormalities and/or dysfunction in the numerous structures responsible for nociception and pain processing (from peripheral neurons and surrounding glial structures to the complex brain regions processing emotions and aversive experiences). Getting back to Burning Mouth Syndrome, there is compelling accumulated evidence that this highly complex disorder is of neuropathic origin, both central and peripheral, linked to neurosteroid imbalance, dopaminergic pathways dysfunction and stress-related neurotoxic lesions (explaining why patients report pain following a major psychotraumatic event).7 As such, the only pharmacological treatments that seem to have some effect are those used for neuropathic pain conditions (such as amitriptyline, gabapentin, pregabalin or clonazepam). Psychotherapy can also be useful, to help patients cope with the chronic pain and underlying psychotraumatic event.

8 – Ignorance begets iatrogeny

During my undergraduate training, one of our clinical teachers often liked to remind us of the simple truth that “When you are a hammer, everything looks like a nail.” How true this is, especially in as highly a specialised field as dentistry. When 99.9% of the time the culprit of most oral diseases (and subsequent symptomatology) is the tooth or its surrounding tissues, it is difficult to think otherwise when it isn’t. This is even more difficult if as a clinician you do not know that dental pain can be non-odontogenic, referred from other craniofacial structures or even visceral inputs (such as cardiac pain presenting as jaw pain8). 

Diagnosing non-odontogenic odontalgia can thus be a ghastly complex process, especially if the incriminating tooth is decayed, infected, or restored. I remember a female patient in her forties with perfect dentition and impeccable oral hygiene, whose total dental work comprised 3 porcelain crowns on adjacent teeth (15-16-17 if my memory serves me well) and 2 other crowns on the other side of her jaw (26-27). This struck me as an odd presentation for tooth decay (or cracked teeth) considering that all the other teeth were pristine. Then she explained her story. She had been experiencing recurrent severe throbbing pain in the maxillary teeth for quite some time and her practitioner, suspecting pulpitis, had performed a pulpotomy and root canal treatment on her right maxillary first molar. As the pain did not subside, so was done for the second molar and then the second premolar, to no avail. Then the pain changed sides and so was done for teeth 26 and 27. But the pain did not stop and for sure: all along, she had failed to mention (or the practitioner had failed to ask) that she was severely nauseated during the painful episodes, and that she suffered from an intolerance to strong lights or sounds (photophobia and phonophobia), which might have prompted the (correct) diagnosis of episodic migraine attacks!

It is quite unfortunate that few medical doctors and dentists (and patients for that matter) are knowledgeable about the ‘dental’ presentation of migraine, quite logical when one considers that migraine pain is secondary to the activation of the trigeminal system (mostly the V1 branch, but also V2 and V3).9 In such a context, no one is to blame for not being easily able to differentiate a throbbing pain in a decayed (or healthy) tooth secondary to a migraine attack from acute pulpitis.

We can only hope that with future improvements in undergraduate and postgraduate training on orofacial pain conditions, such diagnostic errors and subsequent iatrogeny will someday be a thing of the past.

9 – Although pain isn’t fun, (orofacial) painful patients surprisingly are

You would think that suffering from undiagnosed severe orofacial pain for several weeks/months/years would make people morose, apathetic, or even angry, but surprisingly not that much. Obviously, some patients are “at the bottom of the abyss” as the French expression goes, but I have been most often baffled by the courage and resilience of such painful patients. Everyone copes differently with pain (some patients even have defective/counterproductive coping mechanisms increasing perceived pain) but the will to continue living a ‘normal’ life seems to be a common denominator among resilient patients. When treated cheerfully, they respond with cheerfulness.

I have found laughter to be a powerful therapeutic strategy, helping the patient put his pain in perspective and reconnect with a fellow human being. It goes without saying that one must laugh WITH the patient, and certainly not AT the patient. Working in a tertiary clinic, most patients referred to me initiate the conversation along the lines of: “I have seen every specialist possible. Doctor, you are my last and only hope.” to which I cannot refrain from (stupidly) retorting “Oh. No pressure then!”.  

In cases of heartsink catastrophising patients, laughter can help temper the often overemphatic expression of their suffering (“Oh doctor, if you don’t help me immediately, I’m literally going to die from my pain!”), thus bringing the discussion back to more diagnostic-relevant matters and avoiding hours of unfortunately-irrelevant lamentations.10 When used in a respectful and cheerful manner, most patients actually gain perspective and focus, without feeling belittled or dismissed. 

10 – Press on

As a tertiary clinic, we are often asked to find answers where others have failed before because of insufficient time, means or expertise. Most often, the usual and typical cases are accurately diagnosed and managed and do not need the expertise of a tertiary pain clinic. Thus, remains the complex and bizarre.

If one is to diagnose such cases, a ‘leave no stone unturned’ approach seems mandatory. This can be a long painstaking process, especially for the patients. Several of our patients have had multiple prior diagnoses (and associated treatments) before the final ‘accurate’ one (the one that led to an effective pain-relieving treatment).

When multiple diagnoses fail to provide such effective treatment options, it can become very frustrating for the practitioner, especially in a non-specialised clinical setting. I recall a patient who showed me a “breakup letter” (as she put it) she received from her dentist, unable to do “anything more” for her. Although understandable (no one knows all), it is unfortunate that the doctor/patient relationship was so brutally severed, where one could have just as easily sent her for referral in a more specialised setting. As a profession, we should always press on, trying to figure out what is wrong with the patient, in a multidisciplinary team-based effort. If we give up, what hope remains for the patient? 

With the recent creation of the French Journal of Dental Medicine, let us not forget all that patients can teach us about their ailments, in insufficiently explored fields such as orofacial pain, and beyond. As section editor for orofacial pain and oral medicine, my wish is that this journal will serve as an easily accessible exchange platform for French and international practitioners keen on sharing their personal clinical experiences on such subjects. May we all be able to cure our painful patients and if not, at least relieve their suffering.  

REFERENCES

1. Moreau N, Dieb W, Boucher Y. Physiologie de la douleur. Info Dent 2018; 28: 28-41.

2. Moreau N, Boucher Y. Douleurs oro-faciales. EMC – Médecine buccale 2020; 1-21 [Article 28-290-C-10].

3. L’homme R, Sulukdjian A, Chanlon A, Moreau N. A propos d’une odontalgie chronique révélatrie d’une hémicrânie continue méconnue depuis 20 ans. Douleur et Analgésie 2020; 33: 119-122.

4. Moreau N. Rethinking the scope of Oral Medicine/Oral Surgery practice: 7 unusual must-know conditions for the oral surgeon. J Oral Med Oral Surg 2019; 25: 24.

5. L’homme R, Sulukdjian A, Chanlon A, Moreau N. D’une douleur à l’autre : A propos d’une douleur neuropathique révélatrice d’une sclérose en plaques méconnue. Alpha Omega News 2020; 34: 12-13.

6. Kosek E, Cohen M, Baron R, Gebhart GF, Mico JA, Rice A, et al. Do we need a third mechanistic descriptor for chronic pain states? Pain 2016; 157: 1382-1386.

7. Jääskeläinen SK, Woda A. Burning mouth syndrome. Cephalalgia 2017; 37: 627-647.

8. Lopez-Lopez J, Garcia-Vincente L, Jane-Salas E. Orofacial pain of cardiac origin: review literature and clinical cases. Med Oral Patol Oral Cir Bucal 2012; 17: e538-544.

9. Benoliel R, Sharav Y. Pain remapping in migraine to the orofacial region. Headache 2009; 49: 1353-1354.

10. Tan Y. The “Heart Sink” patient. The College Mirror 2004; 30: 15.

ABOUT THIS PAPER

Manuscript submitted: 5 September 2020.
Manuscript accepted: 9 September 2020.

DOI: https://doi.org/10.36161/FJDM.0006

KEY WORDS