I underwent bilateral TMJ implant surgery in 2009, hoping to get relief from severe pain. Following the operation, my struggle became more than just coping with the daily pain, but was made worse by the lack of compassion and understanding from health care professionals. Instead of lending an ear to my struggles, my complaints were (and are) ignored. Seeking to alleviate the pain from the first implant surgery, I underwent a second surgery to replace one of the implants, but, damage to the trigeminal nerve had already been done. As a result, I became a trigeminal neuralgia (TN) patient. In short, I sought help for TMJ pain, underwent multiple surgeries, and ended up with permanent nerve damage and constant excruciating pain How did this happen? This is my story.
Having been a TMD patient for 25 years, I was very excited about getting relief through bilateral TMJ implant surgery for the degenerating TM joints. I was grateful at first, because I had found the best dentist there is for this condition who was within two hours from my home, and because my medical insurance would cover the surgery. I felt blessed. Unfortunately, the surgery did not turn out as I had hoped. Day after day, I experience all the types and levels of pain described in science books as the worst that can be experienced by mankind, even described as suicidal-level pain.
My pain continued and kept increasing. I couldn’t understand why I was not referred to a neurologist. Not only that, I couldn’t understand why the doctor wouldn’t explain to me what was going on. At the next appointment I had with the surgeon, I requested to be referred to a neurologist, which was denied. I kept pressing for more information, this time from a second doctor who was present. This was the day when the second doctor finally told me: “You have trigeminal neuralgia (TN) and there is no cure.” I was completely speechless. I looked at the surgeon and felt sick to my stomach.
I thought: How could these doctors have known more, but failed to tell me? I had to adjust to the fact that my life would be one of constant and intolerable pain, but it was not just an adjustment for me, but also for my family, and especially for my husband. Not only was my family life changed, but the challenge extended to my work. I had to drive 100 miles a day, always unsure when pain could suddenly strike. Driving under those conditions put my life (and the lives of others) at risk on numerous occasions. Ultimately, I lost my job since I couldn’t keep up with the demands that were expected of me.
Here is what my life is now like: You wake up in the middle of the night screaming, because you feel there is a knife stabbing you in your skull, or your eye is on fire or a brain shock that was triggered by the ceiling fan… Your eye feels like it has pieces of glass inside when applying eye drops. It feels like your ear is getting drilled with an ice pick; the back of your head hurts and you don’t understand why, and the pain lasts for days. Having hallucinations for nights in a row is so bad that you are afraid of going back to sleep again. These are the nature of pains I will have to endure forever.
In brief, this is what I learned about TN: It is a very painful disorder of the portion of the fifth cranial nerve (trigeminal nerve) that supplies sensation to the face. It is characterized by recurrent electric shock-like (paroxysmal) pains in one or more branches of the trigeminal nerve (maxillary, mandibular, and/or ophthalmic branches), each supplying a different portion of the face. Severe facial pain can last from a second to 15 minutes or longer; some individuals may have up to 100 lightning-like bursts of stabbing pain in a day. Injury to the trigeminal nerve may cause this severe pain condition. Trigeminal neuropathy or post-traumatic TN may develop following craniofacial or dental trauma. These pain conditions are caused by irreparable damage to the trigeminal nerve and secondary hyperactivity of the trigeminal nerve nucleus. Unfortunately, treatment of post-traumatic TN is often ineffective, and pain may not be controlled with medications.
Remember: Pain is not the only problem you will encounter, either with TMD or TN. Socially speaking, you will be in a corner forever. You won’t be comfortable in outdoor places and it takes time to recognize what triggers the pain and adjust your life accordingly. You will feel that living inside your room is more comfortable than seeing people outside. Instead of going out, checking your friends on Facebook, chatting on a TMJ blog or attending a support group is your happy day. You will turn from an enthusiastic outdoor person to a lonesome indoor person. So much bothers you: the sun, the heat, the wind, the breeze, the light, the rain, the stress, and the loud sound. After the third year you will start feeling the aftermath of all the drugs you have taken. Your body starts yelling out loud: “I’m hurting too.”
At this point in my life I’ve seen multiple neurologists and I’ve had repeated MRI, CT scans, and nerve blocks. I’m taking a cocktail of drugs: anticonvulsants, narcotics, and antidepressants. All these drugs are taken together to ease the pain caused by the original bilateral surgery from 2009. So, my message is: Be aware of what you are going to do, inform yourself about TMD. If you consider surgery, choose your surgeon carefully, and overall, ask the questions that you feel need to be answered. Don’t ever be shy to fight for your health! Speak up!
©2015 The TMJ Association, Ltd. All rights