The hunt for answers to:
Trigeminal neuralgia Neuralgia-induced cavitational osteonecrosis Temporomandibular disorders Myofascial pain dysfunction syndrome A typical facial pain
Cathleen Terhune Alty, RDH
She is the dental office`s nightmare. "Mary" has called at least once a week for more than a year, seeking an appointment because her lower jaw is causing her constant pain. Even the receptionist rolls her eyes at the sound of her voice on the phone.
The root canal performed on #30 five years ago has been X-rayed over and over, but it looks normal. She`s been to the neurologist, an ENT, an oral surgeon, a rheumatologist, back to the endodontist, an oral medicine specialist, a psychologist, and a psychiatrist. She`s been to two pain clinics. She has spent thousands of dollars on bite splints, amalgam removal, bite adjustments, hypnosis, stress reduction classes, CAT scans, antibiotics and pain killers, nontraditional medicine regimes, and nutritional supplements - nothing helps.
The dentist, although sympathetic, has thrown his hands up in surrender because he sees nothing wrong and is even considering dismissing her from his practice. The endodontist won`t help her because the radiographs do not indicate a problem. He suspects that she is addicted to pain killers. The neurologist isn`t taking on her case because he feels her problem is dental in nature and the patient has hypochondriac tendencies. The oral surgeon is refusing to extract perfectly healthy looking teeth. The ENT says it`s a hard tissue problem which is not his specialty.
Nobody seems to be losing any sleep over Mary`s weird health problems. So now Mary is in your chair for her recall appointment, looking at you, desperation in her eyes. She`s looking for answers and appears to be at the end of her rope. Will you think she`s crazy, too?
Chances are, Mary is neither crazy nor a hypochondriac. Too many people experience these same symptoms. Chronic facial pain can have many symptoms, causing intense and incessant pain. The inability of health care professionals to help or even just sit and listen to the patient`s history increases the patient`s feelings of frustration and helplessness.
Several facial pain disorders exist, with many different etiologies. Researchers have classified some facial pain disorders by the character of pain, duration, location, frequency, and triggers. Five facial pain disorders include trigeminal neuralgia (TN), neuralgia-induced cavitational osteonecrosis (NICO), temporomandibular disorders (TMD), myofascial pain dysfunction syndrome (MPDS), and atypical facial pain (AFP).
Trigeminal neuralgia (TN), also known as tic douloreux (unbearably painful twitch), tends to occur in sudden, brief, shock-like attacks, but can also be agonizing, lightning-like bolts of pain. TN is a chronic disorder of the trigeminal nerve and can involve one or more of the three nerve branches, most commonly the second or middle branch. The right side of the face is more commonly affected than the left side. According to the Trigeminal Neuralgia Association, classic TN has distinct symptoms which separate it from other forms of facial pain:
Y The pain is in short, acute bursts rather than a dull, constant ache. The pain is often described as electric shock-like in nature.
Y The pain is usually triggered by light touch or sensitivity to vibrations - brushing one`s teeth, shaving, a breeze, or talking.
Y The pain has a tendency to come and go with periods of intense, sometimes totally debilitating pain, followed by complete pain-free periods of remission lasting weeks, months, or even longer.
Y Most patients experience pain during the day while they are up and about. Generally, they are pain-free while asleep, unless an episode is triggered by the touch of bed linens or changes of position.
The Trigeminal Neuralgia Association estimates that 15,000 new cases of TN will be diagnosed each year. The causes of TN are debated by medical professionals, but the majority believe there may be an abnormality, deterioration, or injury of the trigeminal nerve`s myelin sheath, which disrupts the electrical impulse to the nerve. Treatment for TN may include drug therapy or surgery. An overall success rate is reported to be about 85 percent for treatment, but 25 percent experience some level of recurrence.
Neuralgia-induced cavitational osteo-necrosis (NICO) is also known as maxillofacial ischemic osteonecrosis (IO), osteocavitational lesions, or Ratner`s bone cavities. This disease may or may not produce pain and is sometimes mistaken for trigeminal neuralgia. According to information from Dr. Wesley Shankland in Columbus, Ohio, NICO is where areas of bone die and leave cavitations or holes in the bone. Bone cavitations may be empty holes or filled with dead bone and bone marrow. They are not readily seen by X-rays or by looking directly at the bone in question.
The bone death is thought to be caused by a lack of blood flow into the bone, which progressively spreads as more blockages develop. It is most often seen in females, 30-55 years old who present with facial pain and blood coagulation problems. The causes of NICO usually cited are dental trauma (including extractions, particularly wisdom teeth), root canal procedures, grinding and bruxing, bacterial trauma from periodontal disease, cysts or abscesses, and toxic trauma from dental materials, anesthetic vasoconstrictors, and other toxins. Diagnosis is difficult because NICO pain frequently is felt in other areas of the mouth.
According to the Maxillofacial Center for Diagnostics & Research, intensity of pain is not related to the amount of bone destroyed. There usually are no obvious soft tissue signs of inflammation, and involved bone may be tender to palpation. Patients often find it difficult to describe the pain and outline its area of involvement. But the general classification of pain symptoms for NICO are:
Y Deep bone ache, which is not responsive to many pain-relief drugs
Y Sharp, often debilitating, well-localized pain, such as a toothache
Y Very intense, intermittent, lightning-burst of pain radiating around the eye area, throat, or neck
Y An uncomfortable feeling of pressure within a broad area of alveolar bone - especially during changes in atmospheric pressure - including a deep burning sensation
Y Headaches
Treatment usually requires drug therapy and surgery to debride and remove dead bone areas.
Temporomandibular disorders (TMD) are actually a cluster of problems that affect the temporomandibular joint, muscles, and vascular structures. These include face and neck pain, ringing or buzzing ear symptoms, and clicking or locking of the jaw. The American Academy of Head, Neck and Facial Pain estimates that as many as 20 percent of the U.S. population have one or more of these symptoms. Causes for TMD symptoms may include trauma or a blow to the head, neck, or face.
Treatment suggestions include ice packs for reducing muscle pain, no gum- or ice-chewing, keeping teeth disengaged from each other, paying attention to sleeping position so pressure is not on the jaw joints, "protected" yawns so the mouth doesn`t open too wide, not resting the chin on the hand, and practicing good posture.
Myofascial pain dysfunction syndrome (MPDS) is a muscle and fascia pain which most commonly affect the muscles of mastication, shoulder, and neck, but can include other skeletal muscles. It is characterized by the development of a trigger point, which is a painful, sensitive area in the muscle. Trigger points are caused by sudden trauma, excessive exercise or chilling, back injury, and systemic conditions, as well as nutritional, hormonal, and physical conditions. Treatment and pain management may include exercise, physical therapy, nutritional changes and biofeedback.
Atypical facial pain (AFP) appears to also affect the trigeminal nerve, but the pain symptoms are more varied in nature than TN. The most common cause of AFP seems to be related to stress, but very little is known about diagnosing and treating this disorder.
Even though these disorders are being classified, studied, and dissected, no one really seems to know how they begin or what works best for treatment. Individual variances seem to make diagnosis very difficult, and finding medical and dental professionals who can offer help is even more difficult. It is frustrating to the patient and the health care professional when treatment options appear to run out.
Health care professionals, however, can sit down and really listen to the patient. Then they can work together to search out new ideas, treatments, and referrals. The Internet has opened up tremendous possibilities for all of us to learn from each other. Saying "I don`t know" is honest. But digging in and trying to find answers is gratifying. The mistake would be to simply dismiss the patient as a hypochondriac and miss the chance to sift through some exciting research and maybe offer hope to a "hopeless" person.
Cathleen Terhune Alty, RDH, is a frequent contributor to RDH. She is based in Clarkston, Michigan.
Marian
Marian`s pain began on the left side of her face when she was in her mid-20s. The pain soon developed into excruciating headaches.
"I thought maybe it was allergies. I was so fatigued and exhausted all the time. I couldn`t sleep more than about two hours at a time."
When she sought an ENT`s expertise, she was simply sent to another dentist. The dentist removed all her amalgam restorations, thinking she was having a reaction to the mercury.
But the pain persisted. The dentist referred her to an endodontist. He opened an upper molar and suctioned thick, green pus three times. Suddenly, Marian found she could breathe through her nose again. Then a dark, gray juice, not blood, was oozing from the tooth. The pain was agonizing.
"Against his better judgment, the endodontist opened the tooth next to the molar and more infection poured out. There was so much infection he couldn`t close up the tooth; it was like capping a volcano. In the end, he opened four infected teeth."
She was given antibiotics and pain relievers and sent to a neurologist. Another doctor felt it might be chronic osteomylitis, or bone infection. He ordered a CAT scan, but the radiologist said nothing looked wrong.
"I traveled out of state for treatment from a dentist who then diagnosed me with NICO. The pain was so severe I had to beg the dentist to extract all my teeth."
At age 37, Marian is seeking a new treatment regimen from a doctor in Poland.
Judie
Judie had "significant dental work" over a 35-year period: Nine root canals, plus several fillings and crowns. Four years ago, her upper left molar began giving her pain. Several different dentists tried to save it, but it was finally deemed hopeless and was extracted.
"The extraction left a hole to my eyeball ... I honestly never felt such a huge crater."
Two years later, she is in such pain that her dentist sent her to a neurologist. He diagnoses her with atypical facial neuralgia but has no clue if her teeth are the problem. A dentist at a university dental school finds "a syringe full of bloody, black, and yellow stuff" instead of bone at the extraction site. He says she has NICO.
She is referred to a dentist who specializes in NICO and he extracts four teeth, all infected. She finds another dentist to extract 16 more teeth as the pain persists. All teeth and bone were biopsied and diagnosed as osteonecrosis, osteomylitis, necrotic bone.
Now Judie`s right elbow has been painful and has been diagnosed as avascular necrosis of the elbow. A bone scan reveals other necrotic areas and her doctors tell her they are clueless as to what to do next.
Patti
Patti has seen over 100 doctors and says she has the names of over 100 people who share her facial pain problem. She suffers from constant pain and needs strong pain medications.
"Doctors generally don`t understand. They think I`m a whiner. This condition is like wind. You can`t see it, but you can see it`s effect."
Beth
Beth`s pain began with a crown on a broken tooth. She returned to the dentist again and again, but he could find nothing wrong. She had a second, third, and fourth opinion, as well as new pain medications, but nothing helped.
She begged a dentist to do a root canal, but the pain became even worse. She was referred to a neurologist, who referred her to a neurosurgeon.
"I finally went to an oral surgeon and had the tooth extracted. It still hurt. I had a bone scan which did show a problem. I had several surgeries to remove the necrotic bone. I`m still in pain. It`s a throbbing, digging, deep pain."
Beth is undergoing morphine injections directly in her spinal column to see if it relieves her pain. Her doctors have diagnosed her with trigeminal neuralgia.
Gail
Gail had a root canal on a cuspid that continued to be swollen. A few years later, she experienced a giant fistula that included her lips, palate and cheek. Most of her facial bones had been eaten away by infection. One half of her palate was like rubber when it was removed.
She has had three years of antibiotics to keep her infection under control.
"I feel like a doctor-hopper. I hate to give my history because they think I`m nuts, but I have to follow up every lead I get until I find someone who can help me."
She has been diagnosed with MS, cancer, lupus, actinomycosis, and insanity.
Carolyn
Carolyn traces her pain to sinus surgery in 1972. Her continuous pain was dismissed as TMJ in the 1980s and the bite splints she religiously wore just made the pain worse. After visits to specialists, she has had multiple surgeries on her face and mouth and estimates she has spent over $75,000 in 1999 alone, looking for relief.
"I am literally spending every dime I have trying to solve this facial problem ... to find physicians who are even willing to work with me has been an effort in perseverance and determination." Her diagnosis is avascular necrosis avolar bone.
Mary
Mary had facial pain that her dentist couldn`t help so he referred her to a neurologist, who referred her to an internist. He ordered an Indium scan that was inconclusive. She went to an ENT, a bone specialist, an herbalist, a chiropractor, an endodontist and an oral surgeon, but the severe pain persisted.
Mary committed suicide last year.
Sherry
Sherry began having toothaches, one after another. Root canal treatment offered no relief. It got so bad that she wanted to die instead of having the pain.
Her dentist dismissed her from his practice. She had all maxillary teeth and posterior mandibular extracted, but her pain persisted. She has deep bone pain in her jaws, arms, and legs. She takes multiple narcotic pain killers and antibiotics and suffers from extreme fatigue, vertigo, and joint pain.
As of yet, she has received no confirmed medical diagnosis.
