BENEFITING: TRIGEMINAL NEURALGIA ASSOCIATION INC
What Is Trigeminal Neuralgia (TN)? TN is a rare and debilitating neuropathic disorder which causes excruciating pain to the face. Pain is triggered by many factors, including but not limited to: weather fluctuations, light touch, breezes, toothbrushing, hair touching the face, and kissing loved ones. It is considered to be one of the most painful afflictions known to medical practice, referred to as the “ suicide disease.". It is a malfunction/malformation of the largest cranial nerve, the trigeminal nerve. TN can strike anyone, regardless of age, gender, or ethnicity. The majority of sufferers are adults, but many children have the disorder as well. There is no cure for TN. It is a chronic, progressive disorder. How is it Treated? Treatments include medication, destructive procedures meant to damage the offending nerve, and brain surgery. None are permanent fixes. Medication: Traditional pain medications are ineffective against neuropathic pain. Anti seizure drugs can sometimes lessen the pain, but they become ineffective over time. Opiates can be of use, but because they are addictive and the patient quickly develops a tolerance to their effects, they are not a good choice. There is also a stigma surrounding their use and pain patients are finding them harder and harder to come by due to tightened FDA restrictions and epidemic misuse. Marijuana has shown promise against nerve pain, but is illegal in most states. Commonly experienced side effects of drug therapy for TN include dizziness, drowsiness, forgetfulness, unsteadiness, and nausea. Some patients experience side effects serious enough to warrant discontinuation. Destructive procedures: These procedures, also called ablative procedures, seek to damage the offending nerve to stop the pain. These treatments can provide pain relief in up to 90% of patients, but they have a pain recurrence rate of 40% at 2 to 3 years post-surgery. Surgery: Microvascular Decompression (MVD) surgery is the most effective treatment, boasting an 80% success rate at 5 years post surgery, but is also the most invasive treatment, as it is brain surgery. The surgeon decompresses the nerve by removing blood vessels that are interfering with it and are believed to be triggering the pain. Surgery is not a cure, it is only a treatment and, like the others, usually stops working over time. What Does All This Really Mean to the TN Sufferer? I personally have had TN for 10 years. I also have a common but lesser known companion to TN called Geniculate Neuralgia, meaning I have multiple cranial nerves affected causing additional pain. In the past decade, I have taken countless thousands of pills, had two brain surgeries, and even submitted to an experimental treatment requiring a 6 day medically induced coma. At this time I am still experiencing constant, severe pain which results in my not being able to leave the house for the majority of the winter months. I now have permanent nerve damage known as Anesthesia Dolorosa. AD is a condition of total facial numbness (like the whole right side of my head was numbed at the dentist) coupled with severe and constant nerve pain. It is the most dreaded risk of surgery and it cannot be treated or cured. For treatment of my TN and GN, I have had to travel to Pittsburgh PA, Baltimore MD, Chapel Hil NCl, and four times to the University of California - Irvine. I travel to Winston Salem NC on a monthly basis to visit the Carolinas Pain Institute. I am Mom to four children, ages 8-16. As you can well imagine, this disorder has robbed me and my children of so much. I have missed many birthdays, school events, performances, and parties over the years. I have gone for months at a time unable to care for them, handing my responsibility over to my mother when necessary. During those times, I have been unable to hug or kiss them for fear of setting off an attack. Why Should You Care? While Trigeminal Neuralgia is rare, it is believed that in the United States there are between 120,000 and 400,000 people with TN. That’s 1 in every 800-2700 people. You know someone who has this disorder. What Does the Facial Pain Research Foundation do? They are the premiere charitable organization funding research for a cure for this debilitating condition.