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A Proposed Diagnosis and Treatment Model
for 
Chronic Face Pain

Richard A. Lawhern, Ph.D.

[Draft - Last Updated May 2005]

This article 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 to be read 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 condition or diagnosis.  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.  

Likewise, please be aware that the author is not a licensed physician and cannot diagnose your face pain with any authority.  This work is the result of my own research in medical and Internet literature sources over a period of seven 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 nearly 2000 chronic facial pain patients.  Although I am a 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.

For readers concerned with facial neuralgia or neuropathy, this website 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

 

 

Disorders Associated With Chronic Face Pain [Alphabetical Order]

·          Anesthesia Dolorosa (a complication of TN surgery)

·         "Atypical Facial Pain Syndrome"  -  NOT A DIAGNOSIS! - ATFP is a label by elimination, describing pain that crosses the midline of the face or is in some other way different from classic trigeminal neuralgia or inconsistent with the hemispheric distribution of nerves in the head and face.

·          Atypical Odontalgia [theorized: Dr. Graff-Radford, M.D.]

·          Bell's Palsy

·          Cluster headache

·          Cranial Tumors and Structural Problems
   --  Acoustic Neuroma
   --  Aneurysm
   --  Arterio-Vascular Malformation [see also: AVM of the Brain and Spine]
   --  Cyst 
   --  Near-brainstem tumor

·          Dental abscess

·          Eagle Syndrome

·          Earnest Syndrome

• Fibromyalgia

·          Hemi-Facial Spasm (7th cranial nerve compression)

·          Migraine headache

·          Muscle contraction headache

·          Myofascial pain syndrome

·          Neuralgias
   --  Trigeminal Neuralgia (TN - 5th cranial nerve compression)
        --- Typical 
        --- Atypical (ATN)
   --  Glossopharyngeal Neuralgia (9th cranial nerve compression)
   --  Post Herpetic Neuralgia (virus reaction in the trigeminal nerve system)
   --  Occipital Neuralgia (rear lower quadrant of the head)
   --  Nervus Intermedius Neuralgia (7th cranial nerve)
    -- Vegal and Superior Laryngeal Neuralgia (compression of the Vagus nerve)

·         Neuropathy: (literally, "nerve damage",  implying mechanical damage)
   --  Blunt force facial trauma or a blow to the side of the head
   --  Whiplash injury to the cervical spine
   --  Dental surgery or root canal

·          NICO  - Neuralgia Inducing Cavitational Osteonectrosis [theorized: Radnor, Bouquot]

·          Temporal Tendonitis

·          Temporo-Mandibular Joint Disorder [TMJ / TMD]

·          Sinus infection / chronic sinusitis

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Known and Theorized Pain Mechanisms 

·         Dental abscess and NICO: bone or tooth root infection and necrosis

·         Sinus infection: infection and fluid accumulation 

·         Migraine and vascular headache: (theorized  - mechanisms uncertain) localized vascular disturbance, neuro-chemical alteration of nerve fibers, low brain magnesium, muscle contractions/spasms, hormonal factors.

·         Eagle Syndrome, Earnest Syndrome, Tendonitis or TMJ:  inflammation, elongation or displacement of facial ligaments or cartilage

·         Neuralgias: compression of nerves by blood vessels, damaging the myelin layer ("insulation" surrounding the nerve)

·         Neuropathy: mechanical damage, erosive effects of infection, possible common neurochemical channels affected by the chemistry of depression

·         Multiple Sclerosis: plaques deposited on nerve surfaces

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Pain Symptoms and Patterns
    [Note: symptoms should be reported during medical interview]

·         Acute, stabbing volleys of "electric shock" pain in one side of the face (TN)

·         Throbbing, burning, constant background pain of lesser intensity (ATN, fibromyalgia, MS)

·         Numbness to touch, with underlying burning pain (anesthesia dolorosa, post-herpetic neuralgia, nervus intermedius neuralgia, neuropathy)

·         Trigger zones for light touch stimulus of pain attacks (TN, ATN)

    -- face, teeth, jaws          
    -- wind in the face, kissing, brushing teeth, touch of scarf
    -- reactions to sudden cold

·         Sudden hyper-sensitivity to light, sometimes accompanied by visual aura (migraine)

·         Periods of spontaneous pain remission, with later recurrence (TN, ATN)

·         Lower sensitivity / pain risk at night or when lying down (TN, ATN)

·         Pain reactions, attacks during altitude and climate change, particularly while flying (TN, ATN, Occipital Neuralgia)

·         Association with menstrual periods (PMS interactions with neuralgia)

·         Association with or triggering by emotional stress

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Other Medical Conditions with Overlapping Initial Symptoms

In the following disorders, the face is most commonly only one of several pain sites.  Any sudden onset of acute pain in the face, chest, back, or extremities should be reported immediately to a doctor and evaluated as possible heart attack.  Any occurrence of sudden numbness, tingling, uncontrolled twitching, tremors or loss of consciousness should also be evaluated immediately by a medical professional and evaluated as possible TIA, stroke, or seizure disorder.  

• Shingles
• Coronary  --  heart attack
• Stroke or transient ischemic attack (mini-stroke)
• Seizure
• Acute high blood pressure
• Excess CNS fluid pressure in the brain (Encephalitis)
• Auto-immune disorders (Lupus Systematosis)
• Fibromyalgia 
• Multiple Sclerosis

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

• Patient's medical and pain history, carefully elicited
• Light touch "pin" test on trigger zones
• Response to nerve block (stellate ganglion block, facial injection)
• Response to short course of anticonvulsant drug (Tegretol)
• Skull series: thin slice MRI with 3D image reconstruction, performed both with and without contrast agent (rule out brainstem tumor, meningioma, aneurysm or AVM; identify blood vessels in contact with nerves.  Note:  MRI is not by itself a reliable diagnostic for face pain). 
• Cranial angiogram (rule out TIA)
• Cervical spine series: thin-slice MRI, evaluate for spine damage or brainstem compression due to whiplash
• Thermograph of the face (experimental: detect asymmetric heat patterns)

* Note: See also “What to Expect”

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Medical and Drug Treatments (alphabetical)

• Amitriptyline, Nortriptyline (tri-cyclic antidepressants)
• Baclofen
• Carbamazepine (Tegretol)
• Clonozapam (Klonopin)
• Lamotrigine
• Neurontin (Gabapentin)
• NSAIDs: opoid drugs (some patients unresponsive, others helped)
• Pamelor
• Phenytoin (Dilantin)
• Trileptal
• Valproic Acid

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Surgical Treatments  (most effective first) 

•   Microvascular decompression (remove or insulate nerve compressions) [See also, facialneuralgia.org]
•   Radiofrequency Rhizotomy (introduce a deliberate lesion on the 5th cranial nerve downstream to interrupt pain)
•   Stereotactic Radiosurgery (Gamma Knife, Lineac)
•   Balloon Compression (deliberately cause a lesion on the  5th cranial nerve downstream from the site of compression)
•   Glycerol Rhizotomy (damage the  5th cranial nerve downstream)
•   Partial Nerve Section (less commonly used, unpredictable side effects)
•   Stellate Ganglion Block (lidocaine injection, short term relief -- office procedure)
•   Botox Injection (short term relief, significant accumulated side effects)
•   Neurectomy (total cutting of the nerve  - uncommon,  unpredictable side effects)
•   DREZ procedure (dorsal root entry zone -  nerve section, last resort procedure, low effectiveness)

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

• Acupuncture
• Acupressure and massage
• Ayurvedic Medicine
• Biofeedback
• Capsaisin Cream
• Cervical Chiropractic
• Exercise (Tai Chi, running)
• Icepacks / heating pads
• Meditation and Creative Visualization
• Raike
• Self Hypnosis
• Transcutaneous Electro-Neural Stimulation (TENS)
• Vitamin Supplements

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Tips for Working with Your Doctor

• With some exceptions, most family doctors don't know very much about pain treatment. You may need to find a well-trained internist, neurologist, anesthesiologist, pain management specialist or neurosurgeon who has recent education in the subject.
•  "I don't know" is an honest answer. "Atypical Facial Pain Syndrome" is a fancy and generally unhelpful label for "I don't know". 
• In the author’s opinion, there is no such medical entity as psychogenic pain. Do not accept referral to a psychiatrist unless your primary care provider provides a detailed diagnosis of your pain disorder and a reason for such referral.
• Pain mechanisms aren't exclusive - you may have more than one. With the possible exception of vagal neuralgia, pain below your collarbone is generally not produced by a disorder of cranial nerves.  Generalized joint pain may derive from MS, Fibromyalgia, Myelofascial pain disorder, Lupus, or autoimmune disorders -- and over 3 million people have these disorders in the US alone.
• Large areas of medical practice are art, not science. Be patient with your physician's uncertainty and don't hesitate to ask for referral and second opinions.
• Treatment for chronic face pain usually starts with medication.   Monitor for toxic side effects and do a liver panel every 90-180 days. Immediately report to your doctor, any sign of jaundice or extreme lethargy.  Be sure your primary care provider knows ALL the meds you are on, including herbal or vitamin supplements bought off the shelf. 
• If you decide to have surgery, find a provider who does the procedure you want, at least several times every month. The base of the cranium is a very small place to work and you don't need somebody mucking about in there who sees the territory only a few times a year.
  

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 not less than 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.

• A detailed medical history will be taken, including any blood-relative family experience of neurologic disorders. The doctor also needs to know what medications you now take, both for pain and for other conditions.
• The doctor will request the details of your pain – how long you have had it, how it first emerged, the character and distribution of your pain symptoms, the circumstances where you have pain attacks, whether it disturbs your sleep, whether you experience “trigger” zones, how previous doctors have treated your symptoms.
• The doctor will conduct what is called a “pin test”, lightly touching a straight pin to your cheeks, throat, neck, and other areas of your face to determine if you have any present trigger zones for pain.
• Additional simple tests will be done to evaluate for generalized neurologic deficit. Your knees and elbows may be lightly tapped with a rubber hammer (reflex test). You will be asked to stand with your feet together and touch your nose with one finger of your left and right hand. Likewise, you may be asked to step two or three paces rapidly with your arms out from your sides. The doctor will gently test the strength of your grip and arm muscles on both sides. These tests can detect indications of TIA or stroke.
• The doctor will darken the room and examine both of your eyes with a small optical instrument. By looking at the blood vessels and structures of your eyes, the doctor can sometimes detect other evidence of stroke, benign tumor, or arterial-veinous malformation – any of which can be a source of face pain.
• If you have not already had CAT Scan, MRA or MRI, the doctor should order these procedures as follow up to the initial session. As indicated elsewhere in this article, MRI is generally done with maximum resolution (thin-slice, 1-mm), both with and without Gadolinium contrast agent. Lower resolution procedures have less chance of detecting nerve compressions frequently associated with facial neuralgias.
• If the doctor chooses to prescribe anti-siezure medications, particularly those metabolized in the liver, he or she should also order blood tests to characterize the function of your liver and kidneys. These tests should be repeated as the amount of your medication is tapered up to effective levels. Later tests will characterize the levels of active agents in your bloodstream.

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Additional Information Resources

• Trigeminal Neuralgia Association Homepage:  http://www.tna-support.org
• "Striking Back -  The Trigeminal Neuralgia Handbook" -  see the TNA Homepage
• "Choosing Treatments for Trigeminal Neuralgia", R.A. Lawhern, Ph.D., Trigeminal Neuralgia Association Homepage
• Facial Neuralgia Resources: http://facial-neuralgia.org
• "Giving Something Back" --  A research specialist provides near real-time Internet information recovery  http://www.lawhern.org
• "Atypical Facial Pain" - James H. Halsey, MD., http://www.emedicine.com/neuro/topic25.htm
• Essentials of Clinical Neurology: Headache and Face Pain [Chapter 3], L.A. Weisberg, C. Garcia, R. Strub.  

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