David Tran's Trigeminal Neuralgia Story
About Facial Pain and Trigeminal Neuralgia
Trigeminal Neuralgia (TN), a type of chronic facial pain condition, may cause cool stabbing or electric shock-like sensations in the lips, cheeks, nose, mouth, forehead, crown, or jaw. This type of nerve pain may last for years. The pain can occur or increase in severity while brushing teeth, laughing, talking, eating, touching the face, or even just from wind blowing against the face. The pain can last from a few seconds to a few minutes with increasing intensity. Most patients have soreness on one side of their face only, rarely on both sides.
Patients suffering from TN may lose sleep and find it difficult to concentrate on any given task. Eventually they may limit their daily activities and reduce contact with society. The disease is one of the most painful diseases in humans. The pain can seriously affect a patient’s ability to work and their overall quality of life. It may also cause patients to develop depression and anxiety, as they wonder how long they must go on enduring the pain.
According to the National Institute of Neurological Disorders and Stroke statistics, 1 out of 8330 people are diagnosed with this condition every year. Although anyone at any age can get it, most people are over 50. Women have a higher incidence than men. If you’ve experienced this type of nerve pain on your face, talk to your neurologist as soon as possible. The longer the condition is left untreated, the worse it will get.
When most people first experience TN symptoms, they think that they have a toothache, so they go to the dentist. Once it becomes clear that they do not have dental issues, they realize they are suffering from nerve pain. Trigeminal Neuralgia is a chronic pain condition that affects the trigeminal nerve, a nerve responsible for carrying sensation from the face to the brain. The trigeminal nerves are the largest pair of cranial nerves among twelve pairs of nerves located in the brain. It goes from the brain to the skull, in front of the ear and then to the face. Its task is to control chewing, biting, controlling the creation of saliva and tears, and simultaneously controlling the sensation of the face. The root of the nerve is located near the ear. From there, it separates into three branches: V1, V2 and V3.
The first branch is called V1, ophthalmic nerve or eye nerve, and is located in the area around the eyes including the scalp from the forehead to the top of the head, upper eyelid, and nasal bridge. The second branch is the V2, the maxillary nerve, it is the upper nerve that covers the lower eyelid running to the cheek, mouth, upper lip, upper jaw to nose, cheeks, gums and upper teeth. The third branch is called the V3, the mandibular nerve, which is located in the lower jaw, the lower lip, the chin, the outer ear, the lower gums, and makes up the feeling of two thirds of the area under the tongue. Until now the cause of this condition is still unknown, but researchers say the "myelin" related degradation, which includes fat and protein around the nerves, causes the pain. It occurs when the nerve is crushed by a blood vessel.
Diagnosis and Medication
The majority of pain I experienced was in the right eyebrows area. I also had a lot of pain in the area around the right side of my nose. In my case, the pain became so intense and intrusive, that I had to take leave from work for almost two years for medical treatment. Initially, my family doctor introduced me to a neurologist, who diagnosed me with Trigeminal Neuralgia and prescribed painkillers. The The neurologist prescribed two 200mg Carbamazepine tablets a day.
When I still had pain the following week, the neurologist added Gabapentin 300mg three times a day. Because the dosage of the pain killers was so high I had to stop driving, and found it difficult to function. I told the neurologist that I wanted to reduce the dose, so he said I could take just one pill every day. Every day I took one, sometimes two Carbamazepine pills, but still the pain persisted and I had difficulty sleeping. When the pain became unbearable I would take Gabapentin.
These drugs made me dizzy, my eyes would become dim and I couldn’t clear my mind, and I found myself unable to do much. Secondly, the medication loses effectiveness over time, requiring higher doses. I only took the drugs in moderation and tried to endure the pain. While continuing to take the medicine, my neurologist performed an MRI to find the cause, but the results of the scan yielded nothing, so he continued to prescribe more pain medication.
People say western medicine is a double-edged sword because it has both good and bad sides. It has a therapeutic effect but if someone overuses the medication they may bear unforeseen consequences. At present, opioids are a major problem in the United States because of the widespread use of painkillers. Many people get addicted to pain medication for long periods of time. My doctor gave me Hydrocodone-Acetaminophen when I was in the hospital, but when I got home, I stopped taking it because it was no longer needed.
About 42,249 people in the United States died of overdosage of opioids in 2016. I didn’t want to be one of those people, and I didn’t want to be taking medicines that would give me bad side effects or cause me to become addicted.
Taking medication for managing the pain from trigeminal neuralgia is only a temporary treatment. For long-term effectiveness, there are many different methods. One option, called Percutaneous Radiofrequency Rhizotomy, uses radio frequencies to block the signals that transmit pain. A second option uses radiation targeting the painful nerve, also called radiotherapy or CyberKnife Radiosurgery. There are also other surgical methods, but they have low success rates, can have additional complications, and don’t guarantee that the condition will not recur within two to three years.
If anyone has this condition, please do not be discouraged. Instead, persevere and seek medical treatment for yourself.
Surgery and Recovery
After exploring the causes and treatments on the internet, I chose a method of surgery called Microvascular Decompression (MVD). MVD involves opening the skull and inserting a sponge between the nerve and artery that is causing pain. This method is the most invasive, but is the best solution. MVD’s success rate is 90% or greater, with a 5% risk of numbness, and 2% risk of hearing loss.
My family doctor referred me to a neurosurgeon at Stanford. When I called, they were able to schedule me for an appointment within a few days. I drove from San Jose to the Stanford Neuroscience Health Center in Palo Alto. That’s the day I met neurosurgeon Dr. Steven Chang. I was first called in by a nurse who took my blood pressure and temperature and asked about my medical history. A moment later, Dr. Chang entered the room. He asked me about the symptoms of the disease and the drugs I was taking. After talking to me for a while, he concluded that I had TN Type 1 nerve pain. He confirmed that MVD is the most effective treatment for this condition, and explained that the surgery will eliminate the pain. I told him I had this disease for twenty years, and it had become so very painful that I wanted him to perform the surgery. After I finished speaking, he said he would return within ten minutes and he stepped out to the hallway.
When Dr. Chang returned, he said he would be able to perform the surgery on the following Monday. Then the nurse gave me paperwork to fill out. When I was done, I was given a blood test and made an appointment for an MRI scan prior to surgery. Dr. Chang then introduced me to Vee Vo. Ms. Vo is the Program Manager at Stanford’s Neurosurgery Department, who explained that she works with Dr. Chang’s team to make sure the patients are well taken care of. I was pleasantly surprised to learn that Ms. Vo is Vietnamese also.
Before the surgery Dr. Chang introduced me to a patient of his, who had just had MVD a month earlier. The patient showed me a picture of himself standing by the bedside after the surgery. He pointed out a scar that had already healed. The scar was five centimeters long and ran along the back of his left ear. He said that he was able to leave the hospital just one day after the surgery and only needed to return one week later remove the staples. It just so happened that when I was in for my appointment with Dr. Chang, this patient was there for a final follow-up visit. He assured me that I shouldn’t be afraid and that the surgery will go well, but I still felt very nervous about having to undergo brain surgery. I spoke with the patient further, and despite being an older man, he looked healthy and happy. I was worried and wanted to delay the surgery, but after speaking with this patient, I felt better and decided to go for it.
I found that communicating with my medical team at Stanford was also very easy, anytime I had a question regarding the condition or the surgery, I would just contact Stanford by phone or message via Stanford's MyHealth account. It wouldn’t take long for the nurse to receive my message, and the reply was almost immediate.
On Monday, April 9, 2018, I was wheeled into the operating room at Stanford. The next thing I remember was waking up in the ICU. Approximately two hours later I was transferred to a patient room where my wife could visit me. I was very happy that the operation was a success, although I felt a lot of pain in the right ear area. The nurses then checked my blood pressure and gave me medicine every six hours. The next day I practiced walking with a four-wheel cart, but because I was weak, the therapist followed me. Every day while at the hospital I ate three meals that I could choose from a rich menu. So I spent a lot of time eating delicious food and watching TV.
I also got to rest because the nurses at Stanford use their smartphones to text each other while working instead of talking loudly on the phone. Everyone at Stanford was very caring, considerate and fun, especially Nurse Laurie who always had a smile on her face. I enjoyed chatting with Nurse Laurie, who had a great wit and enthusiasm for her patients. Nurses Ann Pan, Rita and Carol were always gentle and meticulous. And all the doctors who were present during my operation came to my room to check on me regularly.
Although I was only an inpatient for two days, I really felt the care and attention of the doctors and nurses. On the third day after my operation, I was discharged and my wife picked me up. I would like to thank my wife, Thu Van. She did not mind all the hard work of taking care of me during my illness. I know it was difficult for her and at times she would fall asleep on my bed with tears flowing. Thank you very much, Thu Van.
I also want to thank my sister, Ngoc Cam. I don’t think I could have overcome physical and mental pain without her help, comfort and encouragement. Especially when I need a close relative, she appeared as my savior. Thank you very much for helping me overcome this difficulty.
After all, being in good health is what all of us aspire to. When people are healthy then they have the opportunity to achieve what they want. If anyone has this condition, please do not be discouraged. Instead, persevere and seek medical treatment for yourself. I was very pessimistic about my illness because I thought there was no way to cure it, but after learning about the condition on the internet, I was able to find Stanford, and able to find a cure for my pain. I also want to thank Dr. Chang and his team for curing my illness. I am thankful to have my life back.
Written by: David Tran
This story originally appeared in Vietnamese on news website Viet Bao Online.