First Published 12 January 2011

 EMILY'S STORY

 

By Laurel Garland

In 2003, When Emily was about 2 ½ years old, I remember her starting to cry at the table one day when she was eating. I thought she had bitten her tongue or her cheek. It didn’t seem like anything serious, so I just comforted her and thought nothing of it. It happened a few more times at the dinner table over the next few days, so I thought she had done it again. I checked her mouth and didn’t see anything. She was talking, but didn’t have enough words to tell me what had happened.

 After several weeks, a similar incident occurred, and I reacted in the same way. Over the course of the next year or so, this happened from time to time, and I really thought she had just bitten her tongue or something. Several weeks or even months would go by in between and I would completely forget about it. After a while I started to think it must be a toothache, so when she was 3 I made an appointment with a dentist and took her in. He did a visual exam and said that it wasn’t a toothache because he would be able to see it if it was bad enough to be causing pain. I didn’t know what to think. Very soon after the appointment, the pain disappeared again and I guess I just decided it was over.

Within a few months, she started crying and putting her hand to her cheek in the bathtub. She has always loved her bath, and even loves to have water dumped over her head. She can’t get enough of the water. Looking back, I think when she started having trouble in the bathtub it was from water splashing on her face. I didn’t know it at the time and again wrote it off to a cheek bite or something. All she could tell us is that her cheek hurt. She wasn’t able to describe the pain or articulate what was happening. Again, these occurrences were extremely irregular and unpredictable, with several weeks or months in between, so I tended to forget about it when the pain went away.

I think when we really started to realize something was going on, she was close to 4 years old. The pain was becoming worse, more frequent and it was lasting longer. She started to have pain when we brushed her teeth and when we would dress and undress her. She also would have trouble sometimes if I kissed or touched her cheek. The hard part was that these “triggers” didn’t always cause pain, so it seemed like there was no pattern. I was completely confused and didn’t know what it could be. I thought again that she must have a cavity, so I took her back to the same dentist’s office. She was examined again with the same result. I was really starting to be concerned and frustrated.

At that point we decided we should take her to her pediatrician. As always, during the exam Emily was completely fine, even when the doctor would poke and prod her cheek and mouth. So, the doctor had to go strictly by my explanation. Emily still couldn’t really describe it (the pain) herself. The pediatrician examined her and recommended that we should go to an ENT because she thought Emily might have stones in her salivary glands.

At the ENT appointment, the doctor did an exam and said that she didn’t have stones in her glands. He didn’t know what else it could be, so we left without an answer. He said to come back if it got worse. I was unhappy with that recommendation because we had been dealing with this for at least a year by now. I knew it wasn’t going to just go away.

So I made another appointment with her pediatrician. This time she said that she thought Emily might be faking it to get attention. We didn’t know what to think, because we had been to 2 doctors and a dentist who all said there was nothing wrong. So, my husband and I decided that we were going to stop giving her attention when she complained about her cheek to see if that would take care of it. For several days we ignored her when she cried and even told her that there was nothing wrong with her and that her cheek didn’t hurt. It seems insane now when I look back at that, and I feel extremely guilty for not comforting her or doing anything to help her during that time. We were completely at a loss, and didn’t know what to do.

In the summer of 2004, Emily started waking up crying in the middle of the night with cheek pain. Of course we knew then, without a doubt, she was not faking it. I became extremely concerned at this point, and I decided to take her to a different dentist. This time I found a pediatric dentist and made an appointment. He did an exam, and for the first time, Emily showed pain symptoms during the exam. She cried and was inconsolable throughout the exam. I told them I wanted X-rays, and they tried, but Emily couldn’t stand to have the little film cards in her mouth. So we left with the same result. He said her teeth were fine.

I remembered that the ENT who examined her told us to come back if her pain got worse, so I made another appointment. I had pretty low expectations about this visit, because he had already told us he couldn’t find anything, but I had to do something. He did another exam and again told us there was nothing wrong that he could see.

In August of 2004, I opened up the phone book and went to the Yellow Pages to find another pediatric dentist. I just figured that until Emily’s teeth were X-rayed, I wouldn’t be satisfied. And we had nothing to lose and no other ideas. I went to the Yellow Pages and found a pediatric dentist who was near where I live. I made an appointment and we got in right away.

Before Dr. Hishaw had even examined Emily, I explained her history with cheek pain and told her about all the doctors I’d taken her to, including previous dentists. As soon as I finished our story, Dr. Hishaw said “that sounds like trigeminal neuralgia.” I had to have her repeat herself. I had never heard of it, so she gave me a brief explanation and then said that I should take Emily to a neurologist, who could evaluate her and make a diagnosis. Then she did a full exam, including X-rays, and said Emily’s teeth were fine.

I contacted Emily’s pediatrician, who referred me to a pediatric neurologist, and I made an appointment. He ordered an MRI to rule out other possible causes, but he thought it might be TN too. Emily had her MRI, which was normal, so he prescribed neurontin, an anti-seizure medication that was supposed to suppress the nerve impulses that were causing pain. He told us that pain-killers like codeine were useless against this type of pain. By then we had already figured that out, because the Tylenol with codeine that Dr. Hishaw had prescribed wasn’t helping.

We were so excited to finally have a diagnosis and thought that our problems were behind us. We didn’t realize it then, but everything was about to get 100 times worse. While Emily was on the medication, her pain got progressively worse over several weeks. The neurologist increased the dose about every 7-10 days, but it wasn’t helping.

It got so bad, that finally in October of 2004, she stopped eating, drinking and sleeping. She was in so much pain that she was screaming about every 10 minutes or so, and she had lost her voice. She was also drooling because she couldn’t stand to swallow. She sat on the couch like a zombie, afraid to move because literally any movement triggered the pain. There was no way we could brush her teeth. We could barely get her medicine down. I called the neurologist’s office, and his nurse told me to take her to urgent care. I was very skeptical, because I knew by now that TN was a rare condition and I doubted that an urgent care doctor would be able to treat it effectively.

We went to urgent care, and waited for hours to get in to see the doctor. Emily was screaming in the waiting room, but because she looked fine, I guess they didn’t think she was a priority case. When I finally got Emily into an exam room, the pain had disappeared. The doctor looked at me like I was crazy when I told her what was happening. By then, Emily was acting like herself! The doctor prescribed more Tylenol with codeine even though I told her that it hadn’t worked in the past and that her neurologist had said that it wouldn’t be effective. She also prescribed oxycontin, which is a stronger narcotic. I gave Emily the oxycontin, which didn’t work at all, except to make her even more tired and disoriented.

I started searching online to find out anything I could about TN. I found the TN Association Website and a local support group. I called the support group leader, who answered right away and talked to me for about 40 minutes about TN. He gave me loads of information about what TN is, what causes it, different treatments, etc. He also told me about a local neurosurgeon who worked with the support group and who specialized in treating TN. He got us in to see Dr. Sanan the next day. Dr. Sanan did an exam and told me that he thought Emily should try Tegretol, another anti-seizure medicine. He called Emily’s pediatric neurologist and they worked together to find the right dose for her. Tegretol is a very strong medicine that can have severe side-effects, including liver damage. Emily would have to have regular blood tests to monitor her liver function while on the medication. I got the prescription filled at about 5:30 that day. I gave Emily a dose in the car after leaving the pharmacy, and within about 30 minutes she was completely fine.

We didn’t do any celebrating yet because we thought it was entirely possible that it was just a coincidence. Emily’s pain had been coming and going randomly for close to 2 years, so we were reluctant to believe that it was over just like that. In a follow-up visit with Dr. Sanan, he explained that Tegretol did have an immediate effect, and the fact that it had worked so dramatically for Emily confirmed she did have TN.

The Tegretol worked for Emily for more than a year, but we kept having to increase the dose because her body was building a tolerance to it. We knew that medication was not a permanent solution, and continued to investigate other options. We learned about Microvascular Decompression (MVD), which is a surgery performed on the trigeminal nerve next to the brain. We were cautioned about this surgery by the pediatric neurologist who was managing Emily’s care at the time, and we decided we would put the surgery off for as long as we could.

In the fall of 2006, Emily was on the highest acceptable dose of Tegretol and her symptoms had returned. She was in her second year of kindergarten, and was having a very hard time. She was in pain much of the time, and wasn’t learning. She wasn’t reading at all after a full year of kindergarten and she had even begun to have difficulty spelling and writing her name. This is something she had been able to do before she started school. We were becoming more and more concerned about the side effects from the medication and were starting to feel desperate again. We wondered if the medication was doing more harm than good.

That fall I also attended the bi-annual TNA conference in Portland, Oregon. I was looking forward to talking to doctors from all over the world who specialize in the treatment of TN and I wanted to learn more about surgical options. Emily’s story had come to the attention of the Trigeminal Neuralgia Association because of a news article done by our local paper, and a Discovery Channel show that profiled her earlier that year. At the conference, several doctors came to me to talk about her situation, including Dr. Mark Linskey from UCI Medical Center in Irvine, CA. He was very encouraging about the surgery option and urged me to consider it. He told me he had performed MVD on children before, and all were now pain free.

I called his office and made an appointment as soon as I got home, and within a month had an appointment for surgery. Dr. Linskey performed an MVD in October, 2006. It was extremely scary, but I also remember feeling a great deal of hope. For the first time in years, I felt the possibility that Emily could be “cured.” Her surgery was about 5 hours long. Dr. Linskey said her condition was one of the most severe he had seen. He showed us pictures of the clusters of veins that were wrapped around and even running through her trigeminal nerve. He was confident that the surgery was a success. She was in the hospital for three days and then had to stay in near the hospital for 2 weeks before she could return home. The surgery was 100% successful with no side effects or complications. She hasn’t felt a single twinge of pain in her cheek since she woke up in the recovery room.

As she began to recover from surgery and the medication began to leave her system, we started noticing her personality and behavior change. She wasn’t as “clumsy” as she had been. Looking back, I remember her legs being full of bruises from tripping, falling and bumping into things. I didn’t understand what the medication had been doing to her. She began to do better in school, and within about 6 months was reading above grade level. She had more energy and she became more confident in her day to day activity. Within a few months she didn’t shy away from water or her toothbrush. She began eating crunchy foods again. It didn’t bother her to drink from a straw or suck on candy or chew gum. She didn’t mind changing clothes or being kissed on the cheek anymore.

Now, 4 years later, Emily is 10 years old (she will be 11 in January 2011) and is still pain free. All she has to show for her ordeal is a three-inch scar behind her right ear and the memories of the pain. She talks about it every once in a while. She also talks about Dr. Linskey and how he “fixed her cheek.”

Sometimes it feels like it was yesterday that we were going through the nightmare of TN. It’s hard to explain the fear and panic that we experienced. For almost four years, it took over our lives. Emily suffered so much. It was hard to watch and not feel completely helpless. It took more than a year after her surgery before I could go a full day without thinking about it and worrying that it would come back.

We’re extremely lucky that Emily’s story turned out so well in the end and I wish there was a cure for everyone who suffers with this condition.

Characterizing A New Biological Therapy For Treating

Trigeminal Neuralgia

 

by Robert M. Caudle, Ph.D.

Department of Oral and Maxillofacial Surgery

University of Florida

Trigeminal Neuralgia is a devastating disease that is poorly controlled with current therapies. Tegretol is partially effective in some patients and vascular decompression surgery provides a bit of relief for others.

However, most patients do not find these therapies sufficiently effective because the root cause of Trigeminal Neuralgia is not known. It is difficult to address the underlying etiology with novel therapies.

We, however, have identified neurotransmitter systems on the trigeminal neurons that transmit the pain signals from the face to the brain. The receptors in the neurotransmitter systems offer unique targets for delivering biological agents that alter the function of the neurons. Although this form of therapy does not attack the cause of the disease, we can exploit these receptors to disrupt the transmission of pain to provide relief to the patients.

 We have constructed a novel biological agent that can prevent the transmission of pain signals through trigeminal neurons that express the receptors associated with a specific neurotransmitter system.

Preliminary studies have demonstrated that the agent targets the appropriate neurons and that it retains its biological activity for at least 24 hours following uptake by the neurons. We expect that the agent will be functional for up to three months following administration.

In this project we will be scaling up production of the agent and conducting rodent studies to determine if the agent blocks pain from nerve injury as predicted. We will also evaluate the most appropriate route of administration, the dose, and the duration of action of the agent to optimize the therapy protocol. These studies are expected to provide the basis for initiating human clinical trials to develop this agent as a therapy for Trigeminal Neuralgia.

 

Note: The Facial Pain Research Foundation’s Board of Trustees is committed to funding Dr. Caudle’s research  project described above.  Start date of the project is June 1, 2019 and the first phase is to be completed within twelve months.

Editorial Note

 

 

 

 

Mervyn Rothstein

 

 

John K. Neubert, D.D.S., Ph.D., is the principal investigator for the scientific research project entitled Mapping Towards a Cure: Identification of Neurophysiologic Signatures of Trigeminal Neuralgia Pain, at the Evelyn F. and William L. McKnight Brain Institute of the University of Florida. Dr. Neubert is a tenured associate professor in the Department of Orthodontics at the University of Florida College of Dentistry. He also has an adjunct appointment in the Department of Neuroscience at the University of Florida College of Medicine and is on the faculty of the McKnight Brain Institute. Dr. Neubert spoke by telephone from Florida with Mervyn Rothstein, who was an editor and writer at The New York Times for 29 years. Mr. Rothstein now writes the monthly “Regional Theatre” column for Playbill Magazine and is a voting member of the Drama Desk, an association of theater journalists. His first symptoms of trigeminal neuralgia occurred in 2005.

 

The Interview

 

MR: Why did you decide to focus on pain in your career?

 

That’s a good question. When you go through your dental-student career, you learn that pain is very much a part of the public perception of dentistry. That’s what people associate dentists with. As a dental student, I was fortunate enough to be able to do research with someone with studied facial pain and who saw facial pain patients. And I became interested in trying to find better ways of eliminating pain.

 

MR: Your research involves locating and imaging the signature centers in the brain for trigeminal pain, and the pathways to those centers. Once you do that, what happens next? What are the research steps that need to be taken to find the cure – to stop the pain – and how difficult is this process of moving from finding the cause to eliminating it?

 

The first step is the imaging part. We’re hoping that we can find a common signature center, where the pain starts, in the different patients that we’re scanning. We’re also doing a similar study in our animal models. We’re hoping also that there’s an overlap in what we see in trigeminal injury models in rats, and in what we see in humans. Once we can identify the signature center, that will be the target for possible future therapeutic treatments.

 

It’s a difficult process. The first problem is the relatively small number of patients who have trigeminal neuralgia. It’s a relatively rare disorder. So to get a sufficient number of subjects is the first challenge. And the next challenge is to see if there’s that overlap in brain activity in a signature center. The last difficulty comes in translating these results into therapies, and in getting those therapies approved. What’s helping us is that we are working in parallel on the basic side – our animal work – trying therapeutics, so once we are ready to move to the human side we will hopefully have things ready to go as far as therapeutics are concerned.

 

MR: What is the importance of this trigeminal neuralgia study and what potential is there for having an impact on the study of other diseases and possible cures?

 

We’re hopeful we can come up with new therapies, because it’s a disease that’s largely resistant to many treatments, and people even after surgery can still have horrible pain. As far as impacting other disorders, the mechanisms that occur in the face are very similar to mechanisms that occur elsewhere in the body, so we have a very clean model for studying pain.  

 

MR: How have you and your research colleagues attacked this problem from a new perspective?

 

The neural imaging aspect is one of the more novel parts. People have done imaging for a number of years, and they’ve gotten very good at it. We’re using it in the sense of a biological marker, and we’re hoping that this neural image may also serve as a diagnostic tool. It could help people diagnose trigeminal neuralgia versus some other disorder that’s causing the pain. Our project Co-Investigator, Mingzhou Ding, is reknowned for his imaging expertise.  I also work with a lot of very innovative investigators here at the University of Florida in terms of the therapeutic side of things. My collaborators on the project, Robert Caudle and Marcello Febo, have some novel therapeutics as far as targeting specific pain fibers. And we’re working with another investigator here, Todd Golde, who is an expert on viral delivery of pain therapeutics.

 

That’s the direction we’re going to take in terms of innovation, in what we think will be the best approach for treating trigeminal neuralgia. It’s basically a very safe virus that you can program to modify certain genes. You can have genes and proteins increase or decrease, depending on what you program into this vector.

 

The nice thing about these vectors is that it’s just an injection. People who have trigeminal neuralgia start out with some medication like Tegretol and if that doesn’t work they go to some kind of surgery and they may go to another surgery. So the idea of using one of these viral vectors would be to do the injection prior to having surgery, to see how it works, Because you could always do the surgery afterward. It makes sense to have this kind of therapy. I think people would prefer it if we could just inject something to end the pain.

 

MR: Why haven’t researchers completed this research years ago?

 

Two main reasons come up. It’s like a lot of things – technology and money. Advances in technology relating to computer power have really accelerated in the last five or ten years. Our imaging studies, as far as analyzing the data and narrowing the resolution of what we’re trying to locate, use very powerful magnets and computers.

 

It also really comes down to funding. Trigeminal neuralgia is a relatively rare disease, and there’s not a lot of emphasis on trying to get money to study this disorder. Pain is one of those disorders that’s not a disease. There’s a tremendous need to find new products, new pain therapies, but the situation doesn’t fit nicely in any of the National Institutes of Health categories as far as funding needs go.

 

MR: What are the biggest obstacles you face in translating your preclinical findings to the clinic?

 

Probably it’s just going to be dealing with the Food and Drug Administration’s regulatory process as far as getting a new therapeutic treatment approved. That process can take many years. So if we’re thinking about injecting a viral vector or using some kind of other therapeutic, a lot of other studies have to be completed first. Toxicology has to be worked out – we have to make sure it’s a safe approach. And then evaluate the therapeutic efficacy later. One of the problems we run into as researchers and trying to translate things is that many substances or therapeutics work very well in mice or rats, but we’ve seen previously that when you take the same substances and try them on humans, a lot of times they fail. That’s always an issue.  Something that works on a rat doesn’t always work on a person.

  

MR: Every day many people in pain are contacting the Facial Pain Research Foundation asking if it is truly possible to find a cure for trigeminal neuralgia. How would you respond to their question? 

 

I would say it is possible. We’re putting a lot of resources and a lot of brainpower into the problem and we’re hopeful that we can find something. This is a collective “we” I’m talking about – including the other investigators who are involved with the Facial Pain Research Foundation, the groups in Israel, Toronto, Portland, San Francisco, London, New Jersey, North Carolina and Florida. There are a lot of smart people working on this project to find a cure.

 

 

Volunteers Suffering from Trigeminal Neuralgia Needed for this Brain Imaging Study

 

 Enrolling eligible volunteers to participate in a research study about brain imaging:

  

To be eligible you must be:

  

-18-75 years old

 

-Suffer from Trigeminal Neuralgia…diagnosed with Trigeminal Neuralgia

 

-Prefer Classical TN (Type 1) and Atypical TN (Type 2)

 

-Average Pain in the moderate to severe range

 

-No additional major health problems

 

-Be able to go to Gainesville Florida and spend approximately 4 hours

 

-Fluent in English (written and spoken)

  

Exclusion: 

  

-Unable to complete a magnetic resonance imaging (MRI) scan due to implanted

 

or un-movable metal material in your body or severe claustrophobia.

 

  

For further information about volunteering for this study call or email:

  

Dr. John Neubert (352) 273-5687 or This email address is being protected from spambots. You need JavaScript enabled to view it.

 

This Study is directed by Dr. John Neubert, UF College of Dentistry, McKnight Brain Institute

 

 

 

 LAUGH YOUR FACE OFF April 6, 2019

 

Raised OVER $560,000

 

 

 

 

Pat and Amy Tomasulo

 

by Jody Schwartz

 

Hi Everyone…

 

My cousin, Michael Pasternak, is a Founding Trustee of the Facial Pain Research Foundation; so my family and I have attended the LAUGH YOUR FACE OFF (LYFO) event in Chicago for the last five years to show support for finding a cure for Trigeminal Neuralgia and related neuropathic pain. This year I was asked by Dan DiCaro, another FPRF Trustee, to help create the LYFO live auction which had 87 items offered and raised over $57,000.  Winners came from five states and Mexico. So now I am officially a FPRF Volunteer!

 

The Fifth Annual LAUGH YOUR FACE OFF was held last Saturday in Chicago’s beautiful  Park West Performance Center and Concert Venue.  The 700 tickets sold out in only four days so LYFO may have to consider an even bigger venue for next year. The audience’s enthusiasm helped to make this year’s LAUGH YOUR FACE OFF a huge success.  The goal of LYFO has been to support the Facial Pain Research Foundation (FPRF) in their fight to find a cure for Trigeminal Neuralgia (TN).

 

Pat and Amy Tomasulo are the “founders” and “brains” behind the brilliant LAUGH YOUR FACE OFF annual fundraising event. Science researchers, TN sufferers, families and friends filled the audience along with  corporate sponsors. The evening began with cocktails, appetizers, the silent auction and the “great prizes raffle”! Over $10,000 worth of tickets were sold for the raffle!

 

The entertainment started with the fabulous crooning of John Vincent. Then the very funny Pat Tomasulo warmed up the audience with his great standup comedy.  After Pat got the crowd laughing we never stopped.  Calvin Evans, Chelsea Hood, Joe Kilgallon, Russ Williamson, and Ryan Dempster were the other outstanding comedians who took the stage.  They kept the audience laughing and got them “primed” to donate even more money to the silent auction and purchase more raffle tickets.  During the live donation event over $27,000 was raised in a matter of minutes from just the people in the Park West audience.

 

To date LAUGH YOUR FACE OFF has raised over 1.75 million dollars for research to find cures for the rare nerve disorder called Trigeminal Neuralgia.  The Foundation is currently funding seven different research programs to find the cures.  TN is known to be one of the most painful conditions known to humankind.  It is often called the suicide disease because in addition to the unbearable pain for many there is no known cause and no cure. 

 

During the evening several videos were shown to the audience. The first was about the research progress being made by the scientists toward finding the cures.  The second was about Cori Murdoch, a young woman FPRF Volunteer who died last year.

 

The video about Cori contained photographs showing how much she loved life.  It also showed how TN impacted her and her family when the TN pain returned after unsuccessful surgeries and treatments. This video and her parent’s presence in the audience explained the suffering of TN patients and gave everyone present a deeper understanding into the daily toll that TN takes on a person’s quality of life.  It was emotional, inspiring and heartbreaking. 

 

Facing My Facial Pain

By Kelsey Zachary

I am often asked about my TN journey and my decision to get brain surgery in an attempt to help manage some of my symptoms. Today, I am exactly 1 year post surgery and while it was the most terrifying thing I have ever done in my life and the recovery was long and challenging, I can say without hesitation that I would do it again tomorrow to have even an ounce of the relief I’ve been lucky to experience with my surgery. 

In early 2011, I woke up to the most excruciating pain I had ever experienced radiating from my ear, across my face and into both my upper and lower jaws. The pain lasted for only a few moments and then disappeared. I got up, surprised and in shock and then it happened again. After a few more episodes, I waddled my way across the street to the walk in clinic. I was lucky to see a doctor who had seen me before. He looked at me and my history, I had an attack. I couldn’t talk through it. When I could talk again I said it felt what I imagined being stabbed in the face or shot in the face would feel like. Right away he said, I’m sending you for a neuro consult, you look like Trigeminal Neuralgia. And my relationship with facial nerve pain began. I’ll spare you the details, but the short of it took me three neurologists before I found one who would listen. The first two said I was too young for any surgical intervention and that drugs were the only logical management of my condition. Armed with angst and bitterness toward a medical system that seemed more content on tranquilizing me with drugs that made me chronically nauseated, dizzy, caused me to gain nearly 70lbs in all, and made me lethargic and exhausted no matter how much I slept, I fought to educate myself about TN and all the options, good and bad. 

I connected with a couple of amazing people who took tearful phone calls from me. They had TN, and they armed me with information and courage to keep pushing. It was a result of those interactions and the uncertainty of the medical support I had that I founded the Trigeminal Neuralgia Lantern Walk of Awareness! It gave the pain a positive meaning and allowed me to connect with other people and hopefully spread some awareness about a disorder that is largely unknown and misunderstood in the medical world. A disease that has the nickname of “the suicide disease” because the percentage of those who attempt suicide because of what TN does to their life. And I would be a hypocrite to say it wasn’t something I thought about. The thing about TN is, above and beyond the pain, it changes how you live. You have triggers that can start a series of rolling electric shock attacks or make it feel your face is on fire or that all of your teeth are being drilled into simultaneously. Many from my support group said that giving birth was easier and less painful than a TN attack. Everyone has different triggers, and they can change over time or depending on how you respond to meds but for most of us, there are a lot of triggers. My triggers included, but definitely were not limited to: eating, especially crunchy textures, anything cold, or too hot. Brushing or flossing my teeth, touch, air moving across my face, smiling too much or too big, talking, laughing, sneezing, blowing my nose, yawning, putting on my glasses, brushing my hair, you get the idea. As you can imagine this can make simple daily tasks quite challenging. I often would have to use a straw if I drank any liquids that were a tiny bit cold. I couldn’t go out with friends or family much because I’d survive work and be in agony by time I got home and exhausted from the pain and meds that all I could do was go to bed and hope I could sleep to try and recover from the day. 

Onto my third neurologist, maxed out of almost all of the pharmaceutical options, and on cocktails of drugs that were starting to cause damage to my liver, I was over 6 years into my TN journey and I had enough. It took away my twenties from me, it took away my ability to spend time with friends and family, it took my away my ability to do things like go hiking or spend time doing photography. I felt drugged up and I was still getting attacks daily. I went back to my neurologist and I fought. He said they couldn’t help me because my mri came back “unremarkable” but thanks to my research and talking to people, I knew two things. MRIs are not always an accurate diagnostic tool for TN, they are a ruling out tool to make sure your TN isn’t caused by things like MS or tumours pressing in the nerves but often the smaller vessels and arteries are hard to identify or are missed entirely. And two, I knew you wanted someone who does a lot of the procedures that you are hoping to get done. After being told I was “unstable” when I came in begging for help again, I finally had my surgical referral and the wait began. 6 weeks went by and I got a call from Dr Anthony Kaufmann’s office in Winnipeg. I pushed for him because I knew the wait would be a year as opposed to up to 8 years in Vancouver. Kaufmann also learned the procedure from the man who invented it and has devoted his entire medical career to cranial nerve disorders. On top of that, I had heard only amazing things about him and his team. There was not an arterial compression on my MRI but the surgeon saw some blood vessels that he thought might be contributing to my attacks. They gave me about a 50% chance at the surgery being successful and I was 100% willing to go try and have it not work because it was better than not trying at this point. I was put on a cancellation list but told it would about 12-14 months to have my microvascular decompression (mvd) surgery. Fast forward 9 months and I was starting to experience some weird pain in other parts of my body and blood tests started to show that my liver function was not working properly anymore from all the medications I was on. I called Winnipeg and next thing I knew I had two weeks to organize my trip there, the time off work and help from family to make it all happen. We arrived with a buffer day to set up our air bnb and then it was off for all my presurgery consults and blood work ups. 

My surgeon spent a long time with me, my husband and mom, answering all of our questions. He also expressed some concerns that some of my symptoms were more typical of atypical Trigeminal Neuralgia or atypical facial pain. These were symptoms that surgery would not have a chance of helping and had I been misdiagnosed previously and actually had an acute form of facial pain, surgery could actually make worse. I was informed that in his opinion it was a 50/50 gamble that surgery would help or make it worse. That was a lot to digest after feeling so sure that surgery was what I wanted. I was 100% willing to try it and have it fail but to try it and have it get worse was not an outcome I had previously considered. I know a handful of people who had previously had other surgical procedures done and had it go incredibly wrong and they ended up worse. I had seen their experience first hand and suddenly everything was more terrifying than I could imagine. I was given a few hours to think it over and ask any other questions and I made the decision to move ahead with surgery. One thing I so appreciated is that Dr. Kaufmann gave me the power by telling me I could say yes now and that I had until the moment they put me under to change my mind. 

The next morning came and despite all the butterflies and anxious nerves, I made it to theatre and after a couple of jokes and a few last minute pre-operative checks I was out. Waking up from surgery was not a great feeling! I had some relatively minor complications that required some extra checks and follow up with the hospital gastroenterologist. I’ve never experienced that much nausea in my life but it only took a minute before they knocked me out with some strong pain killers and the next time I woke up, I was in the neuro step unit being quizzed about where I was, what the day was and what was my name etc. I’ve never been a big fan of hospitals but the nurses and Dr. Kaufmann were amazing. I could press a button or squeak out a noise and a nurse would come and adjust my medication or help me through a nauseous patch. FYI - throwing up, coughing and sneezing post brain surgery are NOT FUN! Staples aren’t exactly the most flexible to sudden, jarring movements. They had me up and walking less than 24 hours after surgery and before I knew it I was released back to to the air bnb until my 2nd follow up with the surgeon. 

In a lot of ways recovery was easier than I anticipated, the electric shocks I would get from my TN were basically gone but I wasn’t prepared for just how tired everything would make me and some of the things I’d have to work on mentally to adjust to being “healthy” when I’ve been used to being “sick” for nearly 8 years. 

I took my first shower and then I slept for half the day. I have fibromyalgia and some of the restrictions to help my head heal caused severe painful flares. To help prevent a CSF (cerebrospinal fluid) in the first several weeks you aren’t allowed to bend over. I was home making pasta one day and spilled sauce on the floor…… I ended up throwing wet paper towel at it and then used my foot to tidy it up. I also had to sleep on a wedge for several weeks. That was probably the most uncomfortable I’ve ever been in a bed! It was worth it though. I healed well and within a few months I was starting to get a little bit of energy back and most of the surgical pain was gone. The TN shocks were also still gone. I am left with what feels like a sunburn on the left side of my face and almost a tickling of the skin that almost never goes away but taking away the awful waves of stabbing, piercing nerve pain has been a total game changer for me. 

It’s been a crazy year and I can hardly believe the transformation. I’ve lost a good chunk of the med induced weight gain, I can go for drinks and dinner and come home tired, but without the searing nerve pain that would stab me relentlessly. I’ve slowly learned to be less cautious and anxious over any little twinge I get in my face - my nerves have comfy little Teflon pillows now! It’s been a huge adjustment to feel good. I still live in chronic pain that never stops and I have bad days and get occasional TN shocks on my non surgical side but for now they are few and far between and don’t seem to have regular triggers or come with the same intensity they did on my other side. For now, I’m just going to milk every moment that I can be relatively normal again. And enjoy every day that I am able to feel good. There’s no cure for TN so while I am doing better now, it is my hope that more will become educated and that we will be able to get help more easily in the future. No one should have to experience the kind of pain that TN causes, even my worst enemy.

 

Amazon to Support The Facial Pain Research Foundation

 

It takes millions of dollars for scientists to find a cure.  The world-wide support for The Facial Pain Research Foundation’s six research projects to find a cure for trigeminal neuralgia and related neuropathic pain has grown enormously over the last three years.  Corporations, foundations, scientists, medical professionals, celebrities and individuals have donated their time, money and talents to help our international consortium of researchers.  Much of the momentum is the result of friends with neuropathic pain asking their friends to help.  As a result, Amazon has become a helper to our growing team of supporters.  Please think about your friends and how they can also help us and let us know at This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Amazon wants to help raise money for The Facial Pain Research Foundation through its Amazon Smile Program. It’s as easy as shopping on Amazon.com, in fact that’s exactly what you do. The Facial Pain Research Foundation is now supported by Amazon.com’s Smile program. The Smile program allows a portion of purchases made on Amazon Smile to go directly to The Facial Pain Research Foundation.

 

When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization.

 

If you already have an Amazon.com account

 

Simply type in Smile.Amazon.com on your browser and login

 

Click ‘Select and Start Shopping’.

 

In the top menu bar ‘click the down arrow’ to the right of ‘Your Account’, then click ‘Change Your Charity’ in the drop down list and choose The Facial Pain Research Foundation