Thursday, January 11, 2007

Nobody Asked Me, But . . . (1/11/07)


If you've never met a neuralgian, you are about to meet one now. Me.

Neuralgians are members of a small group that suffers from trigeminal neuralgia, a disease of the trigeminal nerve. Physicians describe it as the most excruciating condition known to medical science, and sufferers can attest to that. It has been called the suicide disease because of the number of suicides attributed to it before effective treatment was available. The stabbing pain comes on suddenly without warning, almost like a bolt of lightning streaking down the side of the face. It repeats itself at intervals of a few seconds or a few minutes and then is gone as abruptly as it came, only to return unexpectedly.

Despite its intensity, trigeminal neuralgia (also called TN) isn't very well known. In 1990, researchers at the Mayo Clinic in Rochester, Minn., analyzed medical records of that city and found that the disease affected about one in 25,000, mostly those over the age of 50. Other medical statisticians believe that because it is often misdiagnosed and is not required to be reported to government health agencies, TN may be more common than suspected, affecting as many as one in 15,000 persons.

TN is not a new affliction. First-century Greek and Roman physicians called it cephalalgia. French surgeon Nicolaus André described five cases of it in 1756 and called it tic douloureux (painful spasm), a name by which it is still known today.. It was also called Fothergill's disease in 1773, after the doctor who described 14 cases to the Medical Society in London. Other medical terms for it are trifacial neuralgia and epileptiform neuralgia. Early treatments included bloodletting and exorcising of demons, the use of bee and cobra venom, opiate drugs and purgatives. Surgeons tried injecting boiling water, alcohol, chloroform and other chemicals into the face.

When all else failed, they cut the facial nerve, sometimes paralyzing the patient's face. Confederate President Jefferson Davis suffered from it. So did Russian composer and pianist Sergei Rachmaninoff. After suffering for 20 years, he finally achieved relief at the hands of a French dentist and hypnotist in 1930. Author Gloria Steinem has been treated for TN pain since 1994. The late actor Norman Fell (who played the landlord, on TV's popular "Three's Company") underwent neurosurgery to get rid of his TN, and Norma Zimmer, Lawrence Welk's "Champagne Lady," has waged a constant battle against TN pain since 1981.

TN almost always strikes one side of the face in areas served by one or more of the three-branched trigeminal nerve. There are two trigeminal nerves--one for each side of the face. These nerves exit the base of the brain in a region called the "pons" and fan out in three main branches supplying sensation to the face. The lower, or mandibular branch, serves the lower jaw; the middle, or maxillary branch, serves the cheek and upper jaw; the upper, or ophthalmic branch, serves the forehead and eyes. TN pain is usually provoked by a light touch on the face or a breeze or a movement of the face, as in talking, eating or yawning. This sensitive area is called the "trigger zone."

Diagnosis of trigeminal neuralgia is often difficult. Because they see TN rarely, some doctors and dentists may be unfamiliar with the disease. As a result, it is not uncommon for a patient to visit a succession of doctors and dentists, having root canals, tooth extractions, sinus surgeries and other medical procedures. A study of more than 7,000 TN patients showed that nearly 90 percent had pain for more than a year before being correctly diagnosed; 13 percent went for ten years or more before an accurate diagnosis was made.

No cure exists for trigeminal neuralgia, but it can be treated successfully with anticonvulsant drugs used to treat epilepsy. Ever since it was first used on patients in Scandinavia in 1962, carbamazepine (Tegretol, Carbatrol) has been the TN drug of choice. It is still the most used TN drug, although its popularity is now being challenged by oxcarbazepine (Trileptal), which has fewer side effects. Aside from life-threatening allergic reactions, carbamazepine can bring on serious blood disorders, including irreversible aplastic anemia damaging to bone marrow and other blood deficiency conditions. Patients being treated with carbamazepine must have frequent blood tests. A variety of other antiepileptic, antidepressant, muscle relaxant, and autopsychotic or tranquilizing drugs also are used alone or in combination to treat TN.

Medication is the only therapy that about half of all TN patients will ever need for their pain. Occasionally, TN goes away spontaneously. For most patients, however, TN is a progressive disorder, with more frequent attacks and more severe pain. When medicines become ineffective, patients often seek relief through surgery. Five types of surgery are in use today, three involving insertion of a long needle through the cheek to reach the trigeminal nerve. In one procedure, radiofrequency lesioning, heat is applied to the nerve to damage it and reduce the number and intensity of the transmitted pain signals. Ever since the 1800s, surgeons have been injecting various chemicals into the trigeminal nerve to stop the pain of trigeminal neuralgia. The substance most used today is glycerol, a viscous alcohol with the consistency of honey.

The glycerol injected through the needle damages the nerve and interferes with pain signals. A third through-the-cheek procedure, called balloon compression, uses a larger-diameter needle and deposits a tiny balloon alongside the nerve. When inflated, the balloon squeezes the nerve against bony tissue and damages it, disrupting the pain signals. Another type of surgery--radiosurgery, also called gamma-knife surgery--makes no incision; carefully focused beams of radiation cut off circulation to the nerve, causing it to scarify and die. If pain recurs, a second radiosurgery can be done.

The ultimate surgical procedure--and the most expensive--is microvascular decompression. Developed by Dr. Peter Janetta at the University of Pittsburgh, this now widely accepted operation offers the best chance of long-term pain relief. A half-dollar-sized hole is opened in the skull behind the ear, exposing the brain. Using a microscope, the surgeon searches for the trigeminal nerve root. When it is found, a small piece of Teflon surgical sponge is placed between the offending artery or vein and the nerve. Although patient risk is higher than in other procedures, the success rate of this complicated operation can range between 85 and 95 percent. Unfortunately, facial numbness may result from surgical procedures, with slurred speech or even accidental burning of the mouth from hot liquids.

As a disease, TN is unique in the varieties of facial pain in which it manifests itself and in its response to a diversity of treatments, including chiropractic upper cervical spinal adjustment, acupuncture and nutrition therapy. In my own case, I experienced my first TN attack in 1982--like one's first kiss, the first TN episode is never forgotten. After several years of prescription drug treatment, I undertook a search of the medical literature about trigeminal neuralgia. In an obscure paper from Sweden I found reports of success with massive daily doses of Vitamin B-12 over a ten-day period that gave marked relief to patients. I showed this paper to our family physician, Dr. Saleem M. Mir of Croton, and I am forever in his debt. He agreed that it was worth trying since B-12 is essential to the health of the myelin sheath that surrounds nerves. If the damaged myelin sheath of the trigeminal nerve causes the nerve's short-circuiting pain, perhaps B-12 would repair damage to it.

To my surprise and relief, by the fifth day of injections, the pain had diminished to tolerable facial twinges; by the tenth day pain entirely ceased. Eureka! I had found a magic bullet. Vitamin B-12 is now part of my armamentarium. Paradoxically, it does not work for every TN sufferer. With trigeminal neuralgia, no treatment can be counted on to be effective for everyone. Neuralgians must discover through experimentation what works for them.

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