My Facial Pain Story
By Erika Conrad
I was diagnosed with Trigeminal Neuralgia 11 years ago, after many months of being misdiagnosed with ear infections, sinus infections, hypochondria, and mental problems (by a neurologist, no less.) With the benefit of hindsight, I can see now that I had been suffering with facial pain for years before the flare up that led me to diagnosis.
For many months after diagnosis, I was treated with carbamazepine and oxycodone. I had no life. At the time, I had three children, ages 5, 3, and not quite 1 year old. Where I had once been an active, involved mother, I could no longer participate in the lives of my children. I went from homeschooling, raising chickens and goats, growing a vegetable garden, and quite literally, grinding my own wheat to make my family’s bread, to being confined to my bed for most of the day and turning over the care of my children to my mother because I lived in a fog of medication and in horrible pain.
My mother gave me the book Striking Back and I read about Dr. Peter Jannetta. No doctor in my town seemed to know anything about my condition. The neurologists I saw here told me I couldn’t possibly have TN because I was too young or because it wasn’t “in the right place.” I decided that I was going to have to go elsewhere for treatment and if I had to travel, I wanted to see the authority on the subject. I flew to Pittsburgh to see Dr. Jannetta who confirmed my diagnosis and answered my questions. I couldn’t have my surgery with him because he wasn’t in my insurance network, but I was happy to have my diagnosis confirmed irrefutably. I returned home, with no plan for what to do next. I had to continue taking medication and hobbling through.
Shortly after that visit, I attended a TNA conference in Philadelphia (I’m pretty sure that’s where it was.) Dr. Ben Carson spoke to us and I was duly impressed. After his address, I went forward to introduce myself. For some reason, I said to him, “I have a feeling we are going to meet again.” Several months later, I was in his clinic at Johns Hopkins for a consultation. He referred me to a surgeon he had trained who was in my insurance network and I subsequently had my first MVD in April of 2006.
The surgery proved to be a failure and 9 months later I had to go back on Carbamazepine. Over the next several years, I took Carbamazepine, Gabapentin, Topiramate, Lyrica, Cymbalta, and an array of NSAIDs and opiates. None of them gave me adequate relief and all of them took their toll on me physically, mentally, and emotionally. In August of 2014, the pain spiked to a new level. Where wind in my face had always been painful, now I couldn’t go outside at all. Light became excruciating and I had to hang heavy blankets over the windows in my bedroom, a place I rarely left. Sounds that other people didn’t notice left me in horrible pain. Whistling, clapping, finger snapping, dishes being stacked, cutlery being sorted, and the television…even the voices of my children…they were all too much to bear. No amount of medication helped at all and I was in desperate straits. I contemplated suicide hourly.
At that time, I came upon a group of TN sufferers on Facebook. While reading their posts one day, I saw one women’s description of something called Geniculate Neuralgia. I was floored. In over a decade of complaining of deep ear pain and extreme light and sound sensitivity, not once had anyone mentioned this thing called GN. I private messaged her and asked for more details. She told me that her daughter had been operated on by an amazing surgeon in California named Dr. Mark Linskey. She couldn’t say enough about him and how much he had helped her daughter. I researched him online and was very impressed with what I saw. I had nothing to lose and everything to gain, so I called his office. By the end of that day, one year ago to the day, I had booked a plane ticket to travel to CA for an appointment in 2 weeks.
Dr. Linskey told me that I had visible compressions on my MR. I asked if he could help me. His answer was "an unqualified yes." He explained that, because my TN MVD was a redo, I had about a 50% chance of 50% improvement. Compressions on the other cranial nerves that had not yet been addressed were more likely to be reparable, with success odds at more like 80%. He asked me to think about it and call his office if I wanted to schedule the surgery. I flew home and within 24 hours of landing had called to make my appointment.
Dr. Linskey performed my surgery on Dec. 11, 2014. I had nine CN compressions. One of my cranial nerves actually had a blood vessel growing through it. I awoke with massive post-surgical pain and profound numbness on the entire right side of my head, but the TN and GN pain that I had been disabled by was gone. For three weeks, I was happily on the road to recovery. But that ended. Three weeks after my surgery, I developed muscle spasms in my face.
Within two days, the spasms had become constant and terrifically painful. For the next 4 months, the pain increased and the spasms took over the expression on the right side of my face. I was as debilitated as I had been before the surgery, only with a new pain. The meds that I had hoped to get off of were now more necessary than ever. I was taking more than 18 pills a day, including the maximum allowable dosages of carbamazepine and gabapentin, 16 mg daily of hydromorphone (Dilaudid) and Ativan for the fear and anxiety. When I went back to Dr. Linskey for my 4 month follow up I was admitted to UCI Medical Center through the ER for intractable facial pain.
In the days that followed, I was treated with ketamine in an attempt to relieve the pain. Ketamine is a tranquilizer and hallucinogenic drug gaining acceptance for its potential to stop neuropathic pain by "resetting" the way the brain receives pain messages. In the hospital over the next few days, I progressed quickly from oral ketamine to IV ketamine. At the highest IV dose, I experienced pain relief for the first time in many months. But when the infusion stopped, the pain came crashing back into my face.
The only next step with ketamine was sedation.
After having a heart to heart meeting with my doctors and parents, discussing the risks and potential benefits, we determined that I had to try. I was put into a medically induced coma for 6 days, during which time I received large amounts of ketamine.
The coma and recovery were incredibly difficult and traumatic. Regaining consciousness was a Herculean effort and clearing my lungs, which had been infected during the coma and mechanical ventilation, seemed to me that it would kill me. I also suffered through a week of ICU delirium, during which I lived a waking nightmare for which I was wholly unprepared. But the sedation “worked." I had total pain relief when I regained consciousness; for two weeks.
Today, I am on a regimen of gabapentin and baclofen, with Dilaudid as needed. I am in pain from the moment I open my eyes in the morning until the moment I close them again at night. I am learning to live within my limitations, which are devastatingly strict. Instead of finding relief from this horrible condition, I have had to learn a new way of living which, to some, might seem like not living at all. But it is what I have and I am grateful for it. Although the medical treatments I have had didn’t “fix” me, they did in some ways improve my situation, if I choose to see it that way. I have four beautiful children, ages 8, 11, 14, and 16, and I am still here to be their mom. I was pretty sure a year ago that I would soon be gone and they would be motherless. That’s a huge victory over this beast.
I devote a lot of my time to helping other people in the facial pain community. I created the MVD Patient Support group on Facebook. We have over 500 members, and we are a clearinghouse of good information for anyone who has had, will have, or is considering an MVD. It is a drama-free community where people can safely express their questions, concerns, and fears, knowing that they will be encouraged and supported. I am very proud of the group. I am making you a member (it is a closed group) so that you can see for yourself what goes on there.
I have a blog, Ursa Major, which tells my story in much more detail. You can find it at http://ursamajor.erikaconrad.com/
I also have created a series of artwork that was borne of my need to distract myself from the grip of pain. You can see the series at https://www.facebook.com/ArtbyErikaConrad/.
I used one of my pieces to create a series of awareness logos for TN Awareness Day. You can see that collection at http://www.redbubble.com/people/erikaconrad?ref=artist_title_name. All profits from the sale of these items will go directly to the Facial Pain Research Foundation, to which I am a monthly contributor.
I am doing all that I can, within my obvious limitations, to advance the awareness of Trigeminal Neuralgia, to help those who are suffering with it, and to support research efforts for a cure. If my story can help in any way, that would bring meaning to my suffering.
For all those warriors who endure, sincerely,