6.3 Turning Pain into Hope
By Vince Holtmann, MA, MS (USA)
US High School teacher Vince Holtmann was invited to tell his TN story to the Biology students at his school. This is Vince’s story.
June 11, 2008: I wake up, extremely nauseous, in an unfamiliar room. My head aches, as though gripped in a vice, and the room is spinning around me. And yet I know, without a doubt, that today marks a new beginning and is quite possibly the best day of my life.
The events leading up to that unforgettable day had begun about 3 years earlier. I started to experience sharp, yet brief shocks of pain on the left side of my face, above my teeth and just to the side of my nostril. I felt the pain when opening my mouth before taking a bite of food, and it would be gone before I had bitten down. I scheduled a dental appointment, but by the time of the visit, I was no longer having the pain episodes. The dentist took X-rays and said that everything looked normal.
On January 2, 2006, the pain episodes started again. Except now, they were lasting for several seconds and felt like jolts of electricity, considerably worse than the worst possible toothache. The only option for me to see a doctor that day was to see my allergist. Amazingly, he diagnosed something he had never diagnosed before in a patient: trigeminal neuralgia (TN), an extremely rare facial nerve pain. He informed me that TN is considered one of the most excruciatingly painful medical conditions and is often difficult to treat.
He prescribed Tegretol, which nearly eliminated the painful episodes, and referred me to a neurologist. The neurologist ordered an MRI scan, and a few days later, she called to reveal the news: “Mr. Holtmann, you have a mass in your brain.” My heart started pounding. My thoughts immediately turned to brain cancer and how aggressive it can be. She was unsure whether the nearly 1-inch-diameter tumor was cancer. I would have to wait two exceedingly long weeks for more information from a neurosurgeon.
Although the neurosurgeon was fairly certain that the tumor was a noncancerous meningioma, its location was problematic. The tumor lay along my brain stem, pressing on five cranial nerves, including the fifth, or trigeminal, nerve. Exams also showed that I had hearing loss in my left ear and no gag reflex. I was deathly afraid of surgery and joked with family members to hide my fear. “Don’t worry,” I would tell them. “The surgeon says the operation is a real no-brainer.” After consulting with three other local neurosurgeons, I was relieved to have CyberKnife radiation as an option to shrink the tumor. The neurosurgeon assured me that, if the radiation didn’t work, I could always have surgery.
Within 6 months of the radiation treatments, the pain had nearly disappeared. But after about a year, it started coming back. After maxing out on Tegretol, I was now up to the maximum dose for Trileptal. That’s when things began to snowball. My wife and I were eating dinner at a restaurant when I suddenly began laughing hysterically. My wife abruptly escorted me out as I staggered and laughed like someone who’d had too much to drink. On the way home, I developed double vision. We called the neurologist’s exchange and were informed that I had a case of hyponatremia, or low sodium, and instructed me not to take any more Trileptal. The next day, the neurologist prescribed Keppra.
Gradually, my pain worsened. One morning, a steady barrage of lightning strikes of pain began shooting through my face every 15 minutes. I couldn’t speak, eat, open my mouth, or clear my throat. The slightest movement of my face triggered excruciating pain. The attacks felt like someone had connected one electrode to my lip, another above the corner of my left eye, then pulled the switch to electrocute my face. These episodes were lasting for more than a minute instead of a few seconds, burning as if a hot frying pan were being held against my face. My eye and face turned bright red, the muscles around my eye spasmed, and tears streamed down my cheek. It was unbearable and unrelenting—every 15 minutes.
I called my neurologist’s office that morning and again that afternoon, explaining that I was in severe pain. The Keppra clearly was not working. I needed to speak with the neurologist just as soon as she was available. The receptionist finally called back and informed me that the neurologist said she could talk with me at her next available opening in a week.
My wife decided to take me to the hospital emergency department (ED) instead of waiting for that appointment. Upon seeing a couple of my painful episodes, the doctors assured me that they were going to eliminate my pain. They promptly administered doses of two drugs I had never heard of before: Fentanyl and Dilaudid. For about 30 minutes, the pain level dropped considerably, until I became very nauseated and began vomiting. The vomiting immediately triggered the every-quarter-hour episodes of pain again. Against my wife’s advice, my parents came to see me at the hospital. Soon realizing that they couldn’t bear to watch me in such pain, they decided it would be best to go home and pray for me. It was a long, painful, sleepless night.
The next morning, another doctor suggested an intravenous (IV) drip of Cerebyx. Amazingly, by midafternoon, the pain episodes had stopped. I began to eat, talk, and feel good again. That’s when my neurologist showed up with several medical students in tow. She was not happy that I had gone to the ED without her approval. “So, you think if you open your mouth to speak, you will have pain,” she said to me. I nodded my head in agreement. “No,” she said, “I want you to open your mouth and say it.” When I said yes, she quickly replied, “Aha! If you would just open your mouth, you could speak.” Then, she directed the nurse to remove the IV and discharge me. Horrified, I explained that I was only able to speak because of the IV medications and worried that, once those medications wore off, the pain would return. I will never forget her final words of advice to me: “It’s pain. Learn to live with it!”
An hour or more passed as they readied the discharge papers. By now, the IV meds had begun to wear off, and I was in no shape to go home. I remember tightly gripping the bed rails as hospital staff threatened to have security remove me if I didn’t leave. My nurse watched in disbelief as I cringed in pain. I finally gave in and left.
After another night of unrelenting painful episodes and sleeplessness, my wife took me back to the ED. The doctor insisted on calling my neurologist, who wouldn’t allow them to admit me. I begged to see my neurosurgeon; I was more than ready for surgery now. In fact, I was more afraid of not having surgery than I had originally been of having surgery. Clearly, the radiation wasn’t working. But my neurosurgeon sent a message stating that, as long as the tumor wasn’t growing, he felt that there was no reason to consider surgery. I just needed to give the radiation more time—at least 10 years to try to shrink the tumor—and treat the pain in the meantime. I could hardly last 10 minutes, much less 10 years. I now faced the stark realization that the neurosurgeon wasn’t interested in treating my TN, only the tumor. On top of that, my neurologist thought that the pain was “all in my head” and that only the fear of opening my mouth was both preventing me from speaking and causing my pain.
On September 13, 2007, at 3:15 pm, my wife and I were forced to walk out the doors of the ED for a second day in a row. Devastated and hopeless, I felt like my life had become a living hell. I found it hard to believe that such intense pain could exist. My only relief was to quickly attach several metal binder clips along my right cheek and around my right eye to try and match the painful side during each attack. I somehow felt that my newly discovered “pain matching” technique lessened the duration of the episodes.
By now, having come to fully understand why TN had once been described as the “suicide disease,” I would have to begin choosing to live. It was a tough choice. In addition to the physical pain, I was tormented by painful thoughts: Would I ever work again, or would I just become a burden? How much life insurance did I have? Would it be enough to help my wife raise our three children on her own and help them make their way through college? Deep down, I knew I couldn’t give up on my family. That was the one certainty.
The next few days were agonizing. As I would begin to fall asleep, my face would touch the pillow and trigger pain. I couldn’t eat. By the fifth day, I had dropped 20 pounds on the “TN diet.” I had been communicating for five days now by pen and paper. My wife had to go back to work the next day, and she feared what I might do when left alone. I asked her to let a church group of mine know that I was in a lot of pain and could use a few prayers. A doctor in the group called my wife within the hour, upset by the news. He said he would have the pain management doctor at his hospital call me. Then there was another call, from a neighbor who referred me to a pain website. There, I found a link to the website for the Trigeminal Neuralgia Association, now known as the Facial Pain Association (USA). I noticed that a neurologist from my area was listed on the website, and I made an appointment to see him. As I continued to search the website, I found several interesting articles about Dr. Peter Jannetta in Pittsburgh, PA. The pain management doctor called and said that the Dilantin (phenytoin) they sent me home with from the ED should start to take effect in a few days. Three days later, I began to feel some relief and steadily improve. Even though I was still in so much pain, I began to hope.
Eventually, I saw the neurologist from the association’s website, and over the next several months, he closely monitored my blood levels for the Dilantin. I could accurately tell my doctor ahead of time just how high or low my blood levels were, based on how high or low my pain had been. Finally, I mentioned Dr. Jannetta’s name during the visit. My neurologist said that he had previously been to one of Dr. Jannetta’s seminars and that Dr. Jannetta likely knew more about the surgery of tumors causing TN than any other doctor. He suggested that I see if Dr. Jannetta agreed that I should wait for 10 years before considering surgery.
My medical records were sent to the offices of Dr. Jannetta. Dr. Jannetta called me a week later. After reviewing my records, he said he would not have recommended the radiation treatments. Although the radiation could shrink my tumor, it would likely never shrink enough to stop pressing on my trigeminal nerve. He suggested surgery as soon as possible. He believed there was an 85% chance of ending my pain. My response: “When can we start?”
That afternoon in June 2008, when I had woken up in an unfamiliar room, nauseous and my head aching, I had just undergone more than 6 hours of surgery. Dr. Jannetta had removed the tumor and performed his signature procedure, microvascular decompression (MVD). It was indeed the best day of my life. My facial pain was completely gone.
My first chance at giving back came just 3 months after my surgery. I decided to attend a national conference scheduled for the TNA (renamed FPA during the conference). I had never spoken with, met, or known anyone else with TN. I wasn’t going there to look for answers, as were so many others. I was going as a sort of pilgrimage to finally meet “my people” and show them I care.
By chance, at the conference, I met Roger Levy, chair of the board for the association. When he learned that I was no longer experiencing pain, he asked if I would be willing to speak on the main stage during the following day’s “Success Stories” session.
The next day, September 13, 2008, at approximately 3:15 pm, I stepped up to the podium to tell my story and share my message of hope. It was exactly one year to the day, to the hour, and nearly the minute, from when I had been thrown out of the ED for the second day in a row. Thanks to the care of doctors experienced with TN, the many association resources, and the love and prayers of faithful family and friends, I had come a long way in that one year.
