Return to "Giving Something Back"


Classification and Treatment of Chronic Face Pain

Richard A. Lawhern, Ph.D.

[Last Update May 2012]

This paper is a work in progress.  It is an attempt to gather into one place, an overview of medical problems that cause long-lasting (chronic) and often intense facial pain, with a discussion of treatment options and issues.  This is intended for reading by face pain patients and family members, to help improve communications with the doctors who diagnose and treat your pain.  Based on what you see here, you might be led to ask your doctor questions about your diagnosis and the nature of treatments regarded as "best practice".  However, this is not intended to substitute for the professional judgment of a licensed physician.  The idea is to encourage the two of you to talk about what's causing your pain and what options you have for dealing with it.  

Please be aware that the author is not a licensed physician. I cannot diagnose your face pain with authority.  This work is the result of my own research in medical and Internet literature sources over a period of seventeen years, in support of a family member who has trigeminal neuralgia and to aid others engaged in a similar search.  During this period, I have corresponded with over 3000 chronic facial pain patients.  Although I am a former Member of the Board and former Webmaster for the Trigeminal Neuralgia Association, I do not speak for TNA and this work has not been reviewed or approved by anyone involved with the Association [see "About the Author" below]. I am also a site administrator for "Living with TN";  I don't speak for their owners either.

For readers concerned with facial neuralgia or neuropathy, "Giving Something Back" offers three additional resources.  You may select from the following links, for further information:  

Unexplained Facial Pain

Literature Review - Trigeminal Neuralgia

Literature-Review - Trigeminal Neuropathy

 

Most Recent Changes

In November 2011, a reference and article extract were added to the section on "Atypical Facial Pain", from an authoritative statement of the Medical Advisory Board of the US Trigeminal Neuralgia Association, effectively debunking the term as a "wastebasket diagnosis".

In March and April 2011, this article was significantly revised and expanded with a focused discussion of the terms "atypical facial pain" and "somatoform pain disorder.  In the author's opinion, physician use of either of these diagnoses should be strongly discouraged, in that both tend to comprise a dismissal of the patient as a "head case".  Inappropriate assignment of such terms can have immediate, lasting, and horrific consequences to the health and well being of the patient -- and to the willingness of their medical insurance providers to pay the costs of patient referrals to mainstream medical doctors rather than psychiatrists. 

In May of 2012, a reference was added to the section on surgical treatment of face pain, providing results on use of microvascular decompression in an unusually large patient population of both Typical and Atypical TN patients.

Several links to other authoritative websites have been continued in this version, to offer information on particular face pain disorders.  While these sites are believed to be good starting points for exploration, the author makes no claims concerning their being the "best" in their individual areas of expertise.  Further links will be added over time.

================================================

Classification and Treatment of Chronic Facial Pain

Richard A. Lawhern, Ph.D.

May, 2012

Abstract: This article summarizes current medical knowledge concerning the classification and treatment of chronic facial pain. There are several widely recognized categories of chronic facial pain, which often have overlapping symptoms. Differential or joint diagnosis and treatment of these conditions relies primarily upon careful analysis of the patient's medical history and current pain reports, sometimes supported by high-resolution MRI imagery. Diagnosis may also be confirmed by careful observation of initial medical treatment outcomes, with doctors and patients acting as collaborators in the development of a medical care plan.

Article Text:

Chronic, episodic, recurring facial pain may be traced to several types of disorders.

Trigeminal Neuralgia historically called tic douloureux – occurs in the distribution of the three branches of the trigeminal or fifth cranial nerve. This disorder may be characterized as Type 1 (“Typical” or “Classic” TN) which presents as volleys of sharp, penetrating, lancinating, electric-shock pain, with individual spasms lasting up to two minutes and volleys lasting up to two hours. Type 2 (“Atypical” TN) is characterized by prolonged constant, searing, burning, crushing, grinding pain, for some patients at somewhat lower intensity in the trigeminal distribution.  ATN attacks may persist 24-7 for months at a time. Both types sometimes display spontaneous remissions of weeks or months duration, particularly early in development of the disorder.

Incidence rates of these disorders are low. They are recognized as “orphan diseases” by the US National Organization for Rare Disorders. However, recent epidemiology research [Ref 9, 10] suggests that while TN is relatively rare, incidence rates may be higher than previously reported – potentially on the order of 12 to 20 new cases per hundred thousand population, per year.

This type of pain disorder emerges fairly often in the fifth decade of life (mid-40's) and is significantly more prevalent in women than men.  However, cases are documented as early as infancy. Recent demographic analysis at social networking websites suggest tghat perhaps a quarter of all facial neuropathic pain patients first experience pain at age 30 or younger. 

Both types of TN occur most often as unilateral pain, affecting one or more of the three branches in distribution of the fifth cranial nerve on one side of the face. Pain is experienced between the top of the head and the jaw line, forward of the mid-line of the skull and passing just behind the ear. Although less common, TN may also occur bilaterally on both sides of the face, most often with different symptoms or timing of symptoms on the two sides. Both types of TN pain may be initiated by light stimulus on trigger zones that can move dynamically from hour to hour, across the distribution of the trigeminal nerve. Stimulus may comprise heat, cold, light touch or even moving air. Some patients cannot wash their hair or brush their teeth -- or walk in a light breeze -- without fear of initiating an attack. 

The mechanism which creates Type 1 TN is thought to be primarily one of nerve compression caused by small veins or arteries in the region close to emergence of the cranial nerves from the brain stem. Compression and mechanical stimulation of the nerve are believed to compromise the outer Myelin layer around the nerve, allowing abnormal cross-talk between nerve fibers and initiation of uncontrolled pain cascades. In significant numbers of cases, emergence of either type of TN and some other forms of chronic face pain can be attributed to either whiplash automobile injury or blunt force trauma to the head or neck. Deafferentiation pain in the trigeminal nerve distribution can occur following corrective surgery, when peripheral nerve endings are isolated from the central nervous system.

With Type 2 TN, underlying mechanisms are not as well understood and may possibly involve central nervous system sensitization, localized arachnoiditis, or trigeminal neuropathy of unknown etiology. A recent trend in pain research among organizations such as the International Association for the Study of Pain has been to recognize distinctions between trigeminal neuropathy and neuralgia as potentially artificial. Medical treatments of these two supposedly distinct classes of disorder tend to be highly similar, and patient pain-free response of Type 1 TN to surgery is often immediate after nerves and blood vessels are physically separated - a result not expected if the primary mechanism of pain is due to physical damage to the nerve.

      Medication

The first line of treatment for either form of TN is generally anti-seizure medications such as Carbamazepine, Oxcarbamazepine, Lamotrigine and Gabapentin. A positive patient response to a short course of these drugs is widely considered to be confirming of the diagnosis for Type 1 TN. Also useful in diagnosis may be administration of a series of Stellate Ganglion or Mandibular nerve blocks employing Lidocaine, Phenol or sometimes cortico-steroid drugs. If pain relief from nerve block persists beyond a few days, this may tend to confirm a diagnosis of TN.

Anti-seizure drugs have significant side effects in many patients, including short term memory lapses, dizziness, sleepiness, “brain fog”, and in rare instances toxic liver reactions or bone marrow suppression.   In some cases, patient tolerance to drug side effects may be improved by compounding of drugs for topical application.

Note: although tens of thousands of pain patients have been successfully managed by off-label prescriptions of Gabapentin (Neurontin), the manufacturer of this medication has been accused of falsifying trials data concerning the bio-availability of the drug [Ref 11].  However, in the opinion of the author, Neurontin has been demonstrated to be effective in sufficient numbers of pain patients that a patient trial is justified when no other medical condition or concern rules it out.  This drug is believed to be less toxic than Tegretol, given that it is metabolized outside the liver. It has often been prescribed and is often effective in managing Post Herpetic Neuralgia pain.

For patients suspected of having Type 2 TN or in whom anti-seizure drugs do not yield successful management of Type 1 pain, treatment may incorporate medications in the class of tri-cyclic antidepressants, such as Amytriptylene.  Lyrica, Cymbalta, Baclofen, anti-anxiety agents and tranquilizers are also used in poly-therapies. Although narcotic drugs like Oxycontin or Methadone are not effective for many patients, they are known to be effective for some, Such medications, either alone or in combination with anti-seizure drugs,  may be regarded as a last line of defense when other treatment alternatives have proven ineffective and the patient is severely disabled by pain.

     Surgery

When medication is ineffective or creates disabling side effects, surgical procedures may be recommended. For Type 1 TN, Micro-Vascular Decompression (MVD) has demonstrated better than 90% initial surgical success, with persistence of positive outcomes beyond seven years for about 70% of those treated. [Ref 14] Some papers indicate comparable statistics for RF Rhizotomy, though the range of surgical side effects appears to be somewhat broader. Results for Type 2 TN are not as positive, with a reported 37% of Type 2 TN patients experiencing excellent relief and 13% having partial relief after five years.  [Ref 21]

Less reliable and long-acting are stereotactic radiosurgery (Gamma Knife, Cyber Knife, Liniac), Balloon Compression Rhizotomy, and Glycerol Rhizotomy. Gamma Knife surgery is sometimes associated with later development of scarring and adhesions in the target zone and Cyber Knife is known to deliver the radiation dose with less accuracy and increased radiation outside the target zone. About 50% of Gamma Knife patients experience pain recurrence within three years of having the procedure. 

Some neurosurgeons may perform partial nerve sections in an effort to cause a blocking lesion in the nerve. Dorsal Root Entry Zone (DREZ) Myelotomy (DREZ procedure) selectively creates lesions in the region of the spinal cord where sensory fibers enter. [Ref 12]. This procedure is considered by many neurosurgeons to be a "last resort", because some patients later develop severe deafferentation pain in response to it. Deafferentiation pain is believed to arise from attempts of the Central Nervous System to compensate for interruptions of connectivity to peripheral nerves, which occur when a nerve is partially sectioned or completely severed. 

Some physicians are also experimenting with and attempting to standardize practice for deep brain stimulation techniques, motor cortex stimulation, and so-called “Trans-Cutaneous Electrical Nerve Stimulation (TENS)”. At least one "Laser Treatment Center" advertises successful outcomes in TN patients illuminated with low-power lasers.  But there have been no controlled trials of low-level laser illumination procedure;  it is not confirmed effective by the Federal Drug Administration, and is thus not reimbursable by medical insurance. All evidence for this procedure is presently anecdotal.

Administration of any type of surgical procedure tends to be associated with reduced rates of success in subsequent procedures of the same or other types, to address pain recurrence. Surgical correction of Atypical (Type 2) TN in recent years has been less often recommended by examining neurosurgeons. However, some neurosurgeons consider patients who have had a component of Type 1 TN pain at any time in development of their pain, to be potential candidates for MVD.   A recent paper re-published by the Trigeminal Neuralgia Association reports results comparable to those for patients with Type 1 TN, in a collection of cases where face pain originally emerged with a typical TN pattern and then evolved into constant boring, grinding burning pain characteristic of TN Type 2. [see Ref 20]. Thus even a dominant component of Type 2 TN pain may not be a reason to deny MVD surgery to a patient who is willing to accept an elevated risk of possible negative long term side effects, which occur in about 10-15% of all MVD surgeries. 

For patients who elect to participate centrally in their own pain management, ancillary therapies may be tried by such methods as cervical chiropractic adjustment (crainiosacral therapy), acupuncture, acupressure, or homeopathy. These methods do not have a consistent record of success, but have proven helpful to some patients, some of the time. Similarly, patients who have high levels of anxiety and stress may benefit from appropriate ancillary support by use of methods such as Rational Cognitive Therapy, meditation, creative visualization, bio-feedback and non-impact aerobic exercise (the latter to raise natural endorphin levels in the bloodstream).

Symptomatic Trigeminal Neuralgia may emerge as a consequence of several other primary disorders. These include Multiple Sclerosis, benign brain tumors and cysts, calcium deposits,  acoustic neuroma, arterio-vascular malformation, brain aneurysm, meningioma, arachnoiditis,  Eagle Syndrome, Bell's Palsy, and Facial Tendinitis. Occasionally, pain will occur in the trigeminal nerve distribution due to Fibromyalgia, Lupus Systematosis, Hydrocephalus or Chiari Syndrome, but these conditions are usually recognizable due to widespread non-facial symptoms. Cardiac issues may also cause facial pain, and neuropathy of the Vagus nerve may cause cardiac heart rate suppression.

To positively eliminate such diagnoses, medical best practice is increasingly for face pain patients to undergo MRI brain scan at sub-millimeter resolution under a “trigeminal protocol,” performed both with and without a contrast agent such as Gadolinium. Post-procedure 3-D reconstruction is recommended for maximum clarity and detail of medical assessment. Not all MRI centers perform these procedures, and not all insurance companies are willing to pay for them.

Given that compression of nerves by very small blood vessels can be associated with facial pain, absence of visible nerve compressions in MRI imagery is not a reliable basis for withholding MVD as a viable surgical option. In the absence of confirming MRI evidence, the patients' medical history and pain distribution may prove more important in confirming a diagnosis of either type of TN, and in selecting treatments. Some neurosurgeons advise against the use of MVD or other surgery in Atypical TN patients, due to overall low success rates.

TN symptoms may also overlap those of several forms of headache, including migraines, Cluster Headache, and Short-Lasting Unilateral Neuralgiform Headache With Conjunctival Injection and Tearing [SUNCT] [Ref 8].

Other Facial Neuralgia or Neuropathy

Neurological face pain can occur in distributions other than that of the trigeminal nerve, with similar symptoms. These conditions include Geniculate Neuralgia (also known as Nervus Intermedius Neuralgia or Ramsey Hunt Syndrome) presenting with sharp, penetrating pain deep within the ear.

Glossopharyngeal Neuralgia (pain in the throat, palate and/or below the ear) is sometimes accompanied by a “fish bone in the throat” sensation, associated with the ninth or tenth cranial nerves.

Greater or Lesser Occipital Neuralgia, presents with pain in one or both rear quadrants of the skull, behind the mid-line and sometimes down into the cervical spine. Occipital Neuralgia may emerge spontaneously for no apparent  cause, or following whiplash injury, or in some patients as a result of iatrogenic injury during MVD surgery.

One of the untoward side effects of surgeries for TN can be Anesthesia Dolorosa. AD is characterized as a combination of surface tactile numbness to touch, accompanied by intense deep sub-surface burning and tingling. AD is often very resistant to effective treatment, but pain is sometimes helped by topical application of Capsaisin cream on the face.

Post Herpetic Neuralgia may comprise one of the few facial pain disorders that is unambiguously associated with an inflammatory condition. PHN presents in association with re-emergence of the Herpes Zoster virus in Shingles. The virus may cause pain anywhere in the body, including the face. In some patients, diagnosis may be complicated by an outward absence of the common Shingles inflamed rash, blisters, or sensitive skin, before these symptoms develop fully. Treatment comprises use of anti-viral agents, steroid medications, and in some cases opioid drugs; Gabapentin (Neurontin) has been shown to be effective in shortening the course and severity of PHN pain for many patients. Better medical outcomes are promoted by early recognition and anti-viral treatment. [Ref 13, 18 ]

Bells Palsey "is a form of facial paralysis resulting from dysfunction cranial nerve VII (the facial nerve) that results in the inability to control facial muscles on the affected side. Several conditions can cause facial paralysis, e.g., brain tumor, stroke, and Lyme disease. However, if no specific cause can be identified, the condition is known as Bell's palsy. Named after Scottish anatomist Charles Bell, who first described it, Bell's palsy is the most common acute mononeuropathy (disease involving only one nerve) and is the most common cause of acute facial nerve paralysis. [Ref 19]

Dental and TMJ Issues

Facial pain due to neuralgia or neuropathy may have features which overlap those of dental and sinus conditions. Face pain patients are frequently seen first by a dental practitioner who is asked to investigate for possible dental abscess. Referral may be made to an Ear, Nose and Throat specialist (ENT) or endodontist for root canal or to a sinus specialist to evaluate for sinusitis (sinus infection).  Historically, few dentists, dental surgeons or endodontists have sufficient training in facial neurology to quickly recognize facial pain of neurological origin, as a medical entity which is distinct from dental pain.  A group of over 10,000 face pain patients surveyed by the Trigeminal Neuralgia Association in 1999-2003 reported visiting an average of six different practitioners before finding a professional who recognized and diagnosed a facial neuralgia.

Temopro-Mandibular Joint Disorder is one of the most frequently – and perhaps imprecisely – diagnosed facial pain conditions. It is commonly identified and treated by dentists in general practice, or by dental surgeons. [Ref 5-8]   Sometimes attributed to Bruxism (waking or nighttime grinding of the teeth theorized to result from emotional stress), misaligned bite, or debris build-up in the joints of the jaw and adjacent tissues, TMJ Disorder is characterized in dental  literature by a wide range of symptoms. It may present as a combination of earache, toothache, difficulty in swallowing, speech abnormalities, lockup or clicking of the TM joint, pain in the teeth, or headaches. Many of these symptoms overlap those of TN or facial neuropathy. Unfortunately, prevailing differential diagnosis practices tend to structure for either/or decisions rather than recognition of co-morbid or coexistent conditions.

Patients report in various Internet forums that they were initially mis-diagnosed with TMJ disorder and only later re-evaluated at their own request and treated more effectively for facial neuralgia. Even among properly diagnosed TMJ patients, treatments may be problematic.  Current dental practice may comprise irreversible joint surgery or use of dental guards, for which there is little empirical evidence of consistent positive outcomes [Ref 17, 18]. In the opinion of many well-read facial pain patients, any diagnosis of TMJ Disorder should be confirmed by an oro-facial pain specialist whose practice is restricted to this category of medicine (and who is better qualified than a general neurologist) before surgical or other interventions are considered. This view is not shared widely or accepted among dentists, who do not at all appreciate being reminded that they are financially self-interested.

Atypical Odontalgia is literally translated as “unusual tooth pain.” It may reasonably be regarded as a diagnostic label by reduction, given that underlying causes or mechanisms have not been identified. The disorder presents as sharp or dull pain in a tooth or teeth, which seems to “shift” between areas of the mouth, and is not clearly associated with an identifiable dental infection, abscess, or other insult.These patterns of pain appear to have features in common with generalized (symptomatic or non-specific) trigeminal neuropathy, except that pain is largely restricted to nerve endings in the teeth and adjacent jaw bones.

In some cases, patients report pain shifting from tooth to tooth, as if “running away from” multiple root canals or progressive dental extractions. Patients who have shared their experience in public forums have reported that their dentists did multiple extractions in an effort to alleviate such shifting pain -- even in the absence of clear radio-graphic evidence of abscess or other discrete disease process.

Atypical Facial Pain

So-called "Atypical Facial Pain" is sometimes characterized by facial pain that crosses the mid-line of the face, with similar simultaneous symptoms on both sides. The patient may otherwise present with pain that that crosses or spreads beyond expected nerve distributions. Also mentioned in diagnostic criteria is “face pain which corresponds to no known medical disorder.”

Some authorities such as the (US) National Pain Foundation classify Atypical Facial Pain as a “somatoform pain disorder”. [Ref 15] By this is meant that AFP may be evidence of a mental disturbance, obsessional thinking or distorted patterns of thought and reasoning. Such disturbances are grouped with so-called “conversion disorder” and “hypochondriasis” in the Diagnostic and Statistical Manual (DSM-IV) of the American Psychiatric Association (APA).

Classification of somatoform pain disorders is presently being reexamined by the APA for a pending fifth release of the DSM. [Ref 1-4]. From recent medical literature, however, it is apparent that the entire classification is vulnerable to challenge on multiple grounds. Central among these is that there appears to be no reliable body of observational data from which to demonstrate that conversion disorder and somatoform pain disorder are in fact real medical entities for which effective therapies are defined. Moreover -- in the opinion of the author -- the DSM-IV may be at risk of creating a profound ethical hazard by defining one of the supposed “symptoms” of such disorders as comprising the patient's resistance to assignment of such diagnostic labels by medical professionals.

The consequences to the patient of a diagnosis of Atypical Facial Pain cannot be understated. Patients recognize that this label in effect writes them off as “head cases,” denying the objective reality of their pain or blaming them as the source of their own so-called “psychogenic” symptoms. By this lable, doctors frustrated by their inability to help patients with intractable pain may refer patients out of their practices rather than confronting the uncomfortable reality that science does not yet support cures for all illnesses.  Chronic pain is among the most under-funded research areas in contemporary medicine.

In the opinion of the author and of some prominent medical doctors who specialize in face pain treatment, a narrower, more measured and thoughtful definition of "atypical facial pain" is long overdue. One definition which does not explicitly label the patient as a malingerer or mental defective might be “simultaneous bilateral face pain of unknown etiology.” Also needed may be a significant refinement and narrowing of practice guidelines for the assignment of psychiatric diagnoses such as “conversion disorder”.The author has recommended to the APA that specific exclusionary criteria should be applied to the pending classification of "Complex Somatic Symptom Disorder" in the DSM-V, to ensure that patients who have only or primarily face pain are not labeled as having "psychogenic" pain.

Late Breaking News (November 2011): 

The Medical Advisory Board of the Trigeminal Neuralgia Association has published an article titled "Facial Pain Experts Establish A New Pain Classification", in which the assignment of Atypical Facial Pain as both a discrete medical entity and as a psycho-somatic disorder is debunked.  The following extract should give patients hope of eventually receiving better answers than such imprecise garbage diagnoses provide:

    === Begin Extract===

The term “atypical facial neuralgia or pain” was a wastebasket term applied by a serious contributor of a former era to a group of patients he did not understand. Many of these patients were our trigeminal neuralgia type 2 patients. It is unfortunate that many of these people were told they had psychological problems. Many developed psychological problems after the fact when told by everyone that such was their problem. Over the years, our areas of ignorance have progressively narrowed.

A non-pejorative and, hopefully, reasonable term for the ever-narrowing group of undiagnosed face pain problems: Facepain of Obscure Etiology (FOE or POE) to replace atypical facial pain in the Burchiel classification.

    === End Extract===

See:  Peter J. Jannetta, MD, John F. Alksne, MD, Nicholas M. Barbaro, MD, Jeffrey A. Brown, MD, Kim J. Burchiel, MD, Kenneth F. Casey, MD, Steven B. Graff-Radford, DDS, Mark E. Linskey, MD, Donald R. Nixdorf, MD, Bruce E. Pollock, MD, David A. Sirois, DMD, PhD, Joanna M. Zakrzewska, MD. "Facial Pain experts establish a new pain classification." TNA, the Facial Pain Association, November 2011, http://www.fpa-support.org/2011/10/facial-pain-experts-establish-a-new-pain-classification/

Links Between Chronic Pain and Depression

Medical practice now acknowledges that chronic pain and chronic depression are co-morbid conditions -- e.g. they often occur at the same time [Ref 16].  It is also known that these conditions can promote or "play into" each other. Pain exhausts us, disturbing our sleep and draining our energy for daily life. Depression or extreme emotional stress can do the same, rendering us more sensitive to pain or more vulnerable to its emergence. From patient reports in such Internet venues as www.livingwithtn.org, this observation appears frequent in breakthrough pain associated with facial neuropathy. There are also articles in medical literature which trace chronic depression to changes in blood chemistry that are associated with chronic pain.

These factors being stipulated, the term "psychogenic" should still be regarded inappropriate -- if by using it, a doctor legitimates an attitude that the pain is the patient's fault and can be cured by a change in the patient's attitude or a reduction of their obsessional thinking.  The author has been unsuccessful in finding any body of consistent reports for cures in conversion disorder or somatoform pain disorder -- and both are acknowledged to be resistant to treatment in most patients, even in the DSM criteria themselves.  Thus attempts to substitute psychiatric therapy for medical therapy do not comprise valid medicine for face pain patients.

When a physician makes a psychiatric referral with the parting words "there is nothing medically wrong with you -- you need psychological evaluation", many patients would affirm that a gross and potentially malicious medical malpractice has just occurred. Negative consequences to the patient of being labeled a "head case" can be immediate, long-lasting, and in some cases life threatening.

Psychiatric or psychological support, counseling, Rational Cognitive Therapy, guided visualization, meditation, anti-depressant and anti-anxiety drugs are useful for the management of mood, attention and personal energy. These are appropriate support measures within a total program of pain management. The explicit goal for such techniques should be to empower patients to help themselves live more fully, with less personal suffering and less vulnerability to breakthrough pain associated with fatigue and sleeplessness. Unless there are well-documented observations of obsessional thinking, hysteria, or disproportionate and inaccurate over-concern for health conditions, the terms “conversion disorder” or “somatoform pain disorder” should never be applied to facial pain conditions in the absence of generalized pain symptoms in other body systems.

References:

  1. Rief, W, Isaac M. “Are somatoform disorders 'mental disorders'? A contribution to the current debate” Current Opinion in Psychiatry, 20 (2), pp 143-6, March 2007. Abstract http://www.ncbi.nlm.nih.gov/pubmed/17278912 .

  1. Voigt L., Magel A. Meyer B, Langs G, Braukhaus C, Loewe B, “Towards positive diagnostic criteria: a systematic review of somatoform disorder diagnoses and suggestions for future classification.” Journal of Psychosomatic Research, 2010 May; 68(5):403-14. Epub 2010 Mar 12. Abstract http://www.ncbi.nlm.nih.gov/pubmed/20403499

  2. Kroenke K, Sharpe M, Sykes R. “Revising the classification of somatoform disorders: key questions and preliminary recommendations”, comment in Psychosomatics. 2007 Jul-Aug;48(4):277-85. Abstract http://www.ncbi.nlm.nih.gov/pubmed/17600162

  3. Dimsdale J, Sharma N, Sharpe M. “What do physicians think of somatoform disorders?” Psychosomatics, 2011 Mar-Apr;52(2):154-9. Abstract http://www.ncbi.nlm.nih.gov/pubmed/21397108.

  4. Mark Drangsholt, DDS, MPH,a,b and Edmond L. Truelove, DDS, MSDa “Trigeminal Neuralgia Mistaken as Temporomandibular Disorder “, Journal of Evidence Based Dental Practice, 2001;1:41-50 1532-3382/2001

  5. Website: http://www.tmjsymptoms.org, “TMJ Symptoms – Symptoms and Cures for TMJ Sufferers”, April 2011.

  6. Mayo Clinic Staff, “TMJ Disorders”. http://www.mayoclinic.com/health/tmj-disorders/DS00355/DSECTION=symptoms

  7. Anna S. Cohen, Manjit S. Matharu and Peter J. Goadsby, Short-lasting Unilateral Neuralgiform Headache Attacks With Conjunctival Injection and Tearing (SUNCT) or Cranial Autonomic Features (SUNA)—a Prospective Clinical Study of SUNCT and SUNA”, Brain (2006), 129, 2646-2760.

  8. Joseph S.H.A. Koopman, Jeanne P. Dieleman, Frank J. Huygen, Marissa de Mos, Carola G.M. Martin, Miriam C.J.M. Sturkenboom, “Incidence of Facial Pain in the General Population” Pain 147 (2009) 122–127

  9. Gillian C. Hall, Dawn Carroll, David Parry, Henry J. McQuay, “Epidemiology and treatment of neuropathic pain: The UK primary care perspective”, Pain 122 (2006) 156–162.

  10.  John Gever, Senior Editor, MedPage Today “Gabapentin Studies for Off-Lable Uses Cooked”? November 11, 2009. http://www.medpagetoday.com/Neurology/PainManagement/16952.

  11. Washington University, Saint Louis MO, “Center for Nerve Injury & Paralysis” Disorders and Treatments, 2011, http://nerve.wustl.edu/nd_DREZ.php

  12. Medicine Net, “Shingles (Herpes Zoster)”, http://www.medicinenet.com/shingles/article.htm

  13. Marc Sindow, M.D., PH.D., Jose' Leston, M.D., M.SC., Eveleyn Decullier, PH.D., and Francois Chapius, M.D., PH.D “Microvascular decompression for primary trigeminal neuralgia: long-term effectiveness and prognostic factors in a series of 362 consecutive patients with clear-cut neurovascular conflicts who underwent pure decompression”, Journal of Neurosurgery, 107: 1144-1153, 2007

  14. National Pain Foundation, “Trigeminal Neuralgia – Definitions” http://www.nationalpainfoundation.org/articles/820/definitions

  15. Daniel K. Hall-Flavin, MD, “Depression (Major Depression), Mayo Clinic Expert Answers, http://www.mayoclinic.com/health/pain-and-depression/AN01449

  16. Mary Lou Ballweg, Carol Drury , Terrie Cowley, K. Kim McCleary , Christin Veasley, “Chronic Pain in Women: Neglect, Dismissal, and Discrimination – Analysis and Policy Recommendations” Campaign to End Chronic Pain in Women, www.EndWomensPain.org, May 2010

  17. National Institutes of Health (NIH). Technology Assessment Conference Statement - Management of Temporomandibular Disorders. Bethesda, MD. 1996. Available online at: http://www.ncbi.nlm.nih.gov/ bookshelf/br.fcgi?book=hsnihsos&part=A27389.

  18. Mann, F, Baron, R., "Postherpetic Neuralgia" [in German], Klin Monbl Augenheilkd. 2010 May;227(5):379-83. Epub 2010 May 20. Abstract at http://www.ncbi.nlm.nih.gov/pubmed/20490990.

  19. Wikipedia: "Bells Palsy" http://en.wikipedia.org/wiki/Bell%27s_palsy.

  20. Tiril Sandell, M.D, Per Kristian Eide, M.D., Ph.D., Effect of Microvascular Decompression in Trigeminal Neuralgia Patients with or without Constant Pain.  [Note:  registration with the Trigeminal Neuralgia Association is required for access to this article.
  21. Tyler-Kabara EC, Kassam AB, Horowitz MH, Urgo L, Hadjipanayis C, Levy EI, Chang YF., "Predictors of Outcome in Surgically Managed Patients With Typical and Atypical Trigeminal Neuralgia:  Comparison of Results Following Microvascular Decompression".   Department of Neurosurgery, Center for Cranial Nerve Disorders, University of Pittsburgh Medical Center, Pennsylvania 15213-2582, USA.


About the Author:

Richard A. “Red” Lawhern, Ph.D. is a long-time patient advocate and Web author. His doctorate (UCLA 1976) is in engineering systems, and much of his two careers has been dedicated to advanced technology research. He began researching chronic neurological facial pain in 1996, after his spouse presented with pain diagnosed as bilateral vaso-glossopharyngeal and trigeminal neuralgia. He served the US Trigeminal Neuralgia Association as webmaster and a member of its Board of Directors in the late 1990s, and co-authored the design of its National Patient Survey (he is no longer affiliated with TNA management).

Doctor Lawhern currently provides support to chronic face pain patients through TNA Connect, the TNA Network, LivingWithTN.Org, and the Neurological Disorders support group at WebMD. His 2001 redesign of the TNA home page was acknowledged by an Asculapius Award of Excellence in Health Communication, from the Health Improvement Institute.

Dr. Lawhern also wrote the website of the Cranial Nerve Center for Excellence under retainer to Allegheny Hospital in Pittsburgh PA, and co-wrote with Cindy Fleishman the now-defunct “www.facepain.com”. He is credited as co- author of the Internet Resources appendix of “Striking Back – the Trigeminal Neuralgia Handbook” (first edition). In the 16+ years of his work in chronic pain patient advocacy and support, he has corresponded with over 3,000 patients, family members and physicians around the world.

 



Additional Information Sources and Links: 
Disorders Associated With Chronic Face Pain
[Alphabetical Order]



Known and Theorized Pain Mechanisms

  Tools of Differential Diagnosis *
   [Note: not all tools are medically required for all patients]

Medical and Drug Treatments
(alphabetical order)

Surgical Treatments
(
most effective first) 

Treatment Aids - Alternative and Personal Medicine        
     [Note: these treatments should be coordinated with primary care physician]


Tips for Working with Your Doctor

What Should You Expect On A First Doctor Visit?

When you first visit a doctor for diagnosis of your facial pain, you should expect certain basic questions and procedures to be employed. In general, the doctor should spend at least 30 minutes evaluating you, if not more. You are dealing with an exceptionally painful and complex disorder. Evaluation "in a hurry" can miss vital clues. You should also expect to be listened to and accorded credibility by the doctor;  you are his or her best source of information. Your pain experience matters.If the doctor challenges or dismisses your reports, then dismiss the doctor as an incompetent.

Additional Information Resources


Return to  "Giving Something Back"