Facing My Facial Pain

 Tiffany Lynd

By Hanna Shae Smith

Hanna Shae Smith is a writer for the Facial Pain Research Foundation, award-winning journalist, student clinician, and daughter of a person with Trigeminal Neuralgia. Smith lives in Phoenix, Arizona, where she studies chronic pain neuropsychology and neuroscience, teaches emergency basic life support, and volunteers doing search and rescue/recovery.

    Tiffany Lynd was only 18 years old when she first experienced the pain of Trigeminal Neuralgia. Eighteen, at the precipice of the rest of her life. Eighteen, anticipating all that could be subsequent. Lynd dreamed of working in sports – never that she would begin experiencing symptoms of facial neuralgia her senior year of high school.

    The pain began on the lower, left side of her face and is described as “stabbing” and “sharp” – like an icepick or burning rod stabbed into her cheek. Lynd was examined by local physicians in her small Ohio town, however, was told at the time that it was unlikely she was experiencing Trigeminal Neuralgia.

           “Everyone kept telling me, ‘you’re too young,’” Lynd says, a response which prompted visits to neighboring cities for consultation with specialists.

It was an oral surgeon first spoke the words that would change her life forever: Trigeminal Neuralgia.

           “It changed my whole life,” she says. “I didn’t go to college because of it. It just changed the whole course of my life.”

    The time span between first symptom onset and diagnosis was 1.5 years. Prior to her symptoms, Lynd was entirely unfamiliar with chronic pain disorders. She took to the day’s prominent social media platform Myspace, seeking connection with those who could empathize over a shared diagnosis, and was grateful to find a couple such individuals. However, in a time when the internet was not the well of information it has since developed into, Lynd relied on public libraries for literature on her illness – a search which yielded few results. So began her journey for knowledge and relief.

TREATMENT JOURNEY

    Lynd’s diagnosing oral surgeon initially prescribed pain medication and she was subsequently given the nerve-pain-reducer/anticonvulsant Carbamazepine from an emergency room doctor. However, Lynd soon discovered that not only was she allergic to Carbamazepine, but also muscle relaxant Baclofen and nerve-pain-reducer/anticonvulsant Topamax. Although Lynd was prescribed anticonvulsant Gabapentin for several years, she ultimately made the personal choice to stop taking the pain medication after it stopped providing relief.

She now only takes her thyroid medication and blood pressure medication whenever she has a pain flare. Additionally, she has taken Fentora, a pain medication. The prescription regularly costs $8,000 per month for 112 pills, however, a grant allowed her to receive it free of charge. That cost is for the 200 milligram pills and increases per milligram amount. To replace Fentora, Lynd and her doctors are researching medical cannabis, which is legal in Ohio.

           “I have not tried it before,” she says. “My family doctor is all for it. … I’ve tried CBD oil where you just drink it. But, it just kind of relaxes you.”

    Lynd says while she has had a largely good experience with insurance companies paying for procedures, receiving assistance for medication can often be difficult.

           “They don’t want to pay for them or don’t think you need them,” she says.

    Lynd has been seen at seven hospitals and has undergone 17 surgeries, her first being a Gamma Knife Radiosurgery in 2000, which provided relief for approximately 11 months. She was then seen at the Mayo Clinic where she underwent a microvascular decompression in 2002. Several compressions of the nerve were located at that time, leading doctors to believe that the disease occurred from congenital malformation and subsequent compression. Lynd experienced pain relief following her 2002 MVD for five years.

    Following the return of her pain, Lynd underwent multiple Percutaneous Rhizotomies and MVDs. During one operation, the surgeon severed the sensory portion of the trigeminal nerve in an effort to achieve numbness of the face. However, the pain persisted and resulted in a diagnosis of anesthesia dolorosa – translated: “numb pain” – in which a misinterpreted pain sensation continues in the affected area despite the nerve’s touch sensation being either eliminated or diminished. Lynd subsequently underwent another operation in 2012 with the intention of entirely severing the motor portion and re-severing the sensory portion of the nerve. The pain, however, returned worse than before after approximately six months. Additionally, Lynd is now deaf in her left ear and blind in her left eye. She is unable to chew food and is only able to consume soft foods and liquids. Lynd says she now regrets severing the nerve considering how it has negatively impacted her specific, individual case.

COMING TO TERMS

    Undergoing multiple surgeries in hopes of relief, only to have the pain return is indescribably challenging, Lynd says. There were times she did not know if she could go on.

“There’s no explaining when the pain comes back, the fear and frustration. You feel so let down,” she says. “I had a neurosurgeon who told my parents that, ‘she’s either going to kill herself or she’s going to accidentally overdose.’ But, I think through God and my kids, I got through.”

    Lynd’s sons: 15-year-old Eli and 17-year-old Isaiah. Her voice comes to life when she describes them as her motivation, purpose, and reason for living.

           “I don’t know where I’d be without them,” she says.

    Lynd acknowledges that her children have been affected negatively by Trigeminal Neuralgia, yet she says she is grateful for their continued love and support.

           “They tell me it’s made them better people,” she says.

    It’s difficult for Lynd to pinpoint exactly how TN has changed herself, however, considering that it’s been part of her life for 25 years – and especially because symptom onset began at highly pivotal developmental age.

“I have lost a lot of memories [as the result of multiple operations],” Lynd says. “I don’t remember a lot. A couple of the surgeries were really rough afterward. I was in the hospital because of brain swelling. People will send friend requests on Facebook that I supposedly went to school with. I don’t know who they are anymore. … You may have known Tiff back then, but the Tiff now is Tiff 2.0.”

    Lynd also sees in herself some of the same tendencies that young, frightened teenage girl employed for protection.

           “I still push people away. In my mind, I’m protecting them,” she says. “I know that’s hard to let people see you vulnerable. A lot of times, people don’t know the situation. I feel isolated. Sometimes you feel people will look right though you.”

    TN entirely rerouted Lynd’s life, forcing her to rediscover herself and set a new course. She aspired to work in the sports industry prior to her symptoms onset and instead had to adapt to jobs in which she would not be forced to talk for long periods of time – beginning initially as a realtor and later transitioning to loan processing and then a loan officer. She has learned to adapt to her situation. Lynd’s typical day starts when she sends the kids off to school. The rest of the day is spent staying busy to keep her mind off the pain. She is highly involved with the boys’ education and enjoys cooking and baking in addition to doing yoga and meditation to find a measure of mental and emotional relaxation. She is an avid sports fan – especially football and the 49ers – and enjoys attending games and playing basketball with her kids. Lynd is also a writer, composing poetry and keeping journals documenting her thoughts and feelings.

           “It’s a good way to get my frustration out,” she says. “I went through a lot of different emotions. I deal with a lot of anger. Anger at the whole situation.”

Often, she has difficulty sleeping due to the pain and typically does not sleep well or through the night. Lynd keeps record of her attacks and says that she is “electrocuted” about 200-250 times per day. The burning sensation, however, never is mediated. Nerve blocks do not assist with the burning pain.

    One aspect of Lynd’s personality which she knows if gone, is a carefree nature. Simultaneously, despite everything which has changed, she says TN has taught her to be deeply appreciative for what and who she has in life.

           “I take advantage of the good days because they don’t come along very often,” she says. “The main thing that’s changed is that I never take anything for granted anymore. I am just so lucky and blessed to wake up and live the life I do every day.”

FACING THE FUTURE

    Lynd experiences Trigeminal Neuralgia on a daily basis and continues to make plans for future treatment. She is currently scheduled for a motor cortex stimulation, which will be her 18^th surgical procedure since diagnosis.

           “(The surgeon) said he’s done it on others who have had the nerve cut and they have gotten some relief,” she says. “He said, ‘I bet you’d take 10-percent relief.’ I said absolutely.”

    Lynd also continues the nerve blocks which she receives every 2-3 months. The relief typically last about 5-7 days and does not touch the burning pain sensation. She says she is grateful for what relief she gets, however.

    There have been excellent doctors in Lynd’s life, mingled with some who have made the situation more difficult. She encourages medical professionals to listen to patients, be honest, and become more educated on chronic pain disorders.

           “They need to be more educated and not jump to conclusions,” she says. “Some of them are so rude. Listen and be more understanding. … I’ve been to the ER and had a doctor look at me like I’m nuts. It’s just frustrating.”

    To family members of those with chronic pain, Lynd encourages expressing compassion even if empathy is impossible. Since day one when her TN symptoms began, Lynd says that her parents have stood by her side unconditionally and fought for her wellbeing.

           “Without them taking me all over looking for answers, I don’t know where I’d be,” she says, adding that her brother is also both her committed supporter and best friend.

    Lynd says her family may not always understand what she is feeling, but they still provide unconditional support in her times of need.

“Even though they tell me they don’t know what I’m going through, they’ve always been there and I know not everybody’s family is like that,” she says. “Just stand by them no matter what.”

    This type of understanding, Lynd says, is critical to maintaining relationships. Due to a frequent lack of this relational aspect, she has lost friends along the way.

           “I don’t go out much with them and they don’t understand why,” Lynd says. “I just don’t want to be in a situation where I’m out and I get a bunch of pains.”

    Social media, on the other hand, has been critical in both maintaining and creating relationships, Lynd says. She fondly lists name of her TN family, other patients whom she’s met across the internet. They even attend each other’s surgeries and their children spend time together.

           “Without the internet, we all wouldn’t have met,” she says.

    The internet has also been pivotal for Lynd because of increased access to research – as opposed to the libraries she used to browse with difficulty at the onset of her symptoms. This is how she first discovered the Facial Pain Research Foundation. Knowing that someone is out there advocating for her, Lynd says, brings great comfort.

“There are really no words to express how thankful you are. I’m so thankful for everything they’re doing,” she says. “I know that they are putting a lot of time and effort and if they only knew how much they’re helping us.”

    Hope is what Lynd hinges her future on, like so many others in her position. For Lynd, it is the key ingredient of daily life and the greatest admonition she would offer to the frightened 18-year-old girl she once was and all the others who find themselves in her shoes.

           “Don’t ever lose hope. I have to believe there’s a cure out there,” she says. “They’re never alone.”

Michael Pasternak, Ph.D., is a Founding Trustee of the Facial Pain Research Foundation. Dr. Pasternak spoke with Mervyn Rothstein, who was an editor and writer at The New York Times for 30 years. Mr. Rothstein now writes the "Stage Directions” column for Playbill.com. His first symptoms of trigeminal neuralgia occurred in 2005. 

Mervyn Rothstein and Michael Pasternak

MR: Michael, much has happened since our last interview, more than three years ago. What’s the status of the search for a cure for Trigeminal Neuralgia and related neuropathic pain? How many scientists are seeking a cure, in how many cities and countries? What are the ways your medical researchers are seeking answers, and how are they doing so? Please talk about the nine ongoing research projects to find the cure.

Our research is making great progress. Our first-ever research studies are the biggest leap toward finding the causes and lasting cures for Trigeminal Neuralgia in the last 1,000 years. But it’s complicated. Very complicated. Because in the old days, nine years ago, when we got started – January 9, 2011, when we had our first meeting, we hadn’t even started the research, the trustees came together and we made the goal to find the cure – it was all based on the belief that compression on the trigeminal nerve was the only reason for all Trigeminal Neuralgia. 

But as we began to develop projects, and do the research, we discovered that there are other reasons as well. We know that trigeminal pain can also be caused by the myelin that sheathes the nerves being unhealthy and damaged. We know that there can be mutated genes responsible, genes that are not functioning properly, that are not protecting the nervous system. We also know that the nerves themselves can be damaged, in one way or another, by surgery or for other reasons. So we had to undertake research in all those areas.

For that reason, we have 18 lead investigators working in the United States, Canada, Israel and the United Kingdom. Numerous locations. And in each location, we also have technical assistants, post-doctoral researchers, many, many people working on our nine different projects to find the cures. 

For example, to deal with the damaged nerves, we reached out to Allan Basbaum at the University of California, San Francisco, who had done work on using neuro-stem cells to fix damaged nerves in other areas of the body. And we asked him to apply his work to the trigeminal nerve. That research is ongoing, and is making progress. 

To cite another example, for our work on causal, damaged or mutated genes and DNA, we needed 1,000 DNA samples from people with Trigeminal Neuralgia from nine collection centers in the U.S., Canada and the U.K.  And we needed to make sure that the people providing the samples really had TN and not some other related disease. And we succeeded.

No other rare-disease research has ever collected that number of samples in a process that assured excellent phenotyping – screening for the disease. And now we want to look at their DNA, we want to know where the mutant genes are, what the sufferers’ genes have in common.  when you ask what’s the status, the answer has to be very complicated. But the status is that in each of our projects, we have made progress, and we continue to make progress. We now know, for example, where in the brain the pain is occurring. We know the pathway of the pain from the trigeminal nerve to the brain stem to the place in the brain where the pain is experienced. And now that we know this, we’re working on how to block the pain pathway – block the pain from getting to the pain centers. 

So the answers, and the cures, are going to be different for different people. Some will need to have their myelin repaired. For example, in our research for the last eight years at the University of Florida, we know that in tested animals there are ways to repair the myelin that can put a stop to the pain. And now, as in most of our projects, we are beginning to talk about human studies. 

MR: When the Foundation was started, you set a goal of finding a cure by the end of 2020. That’s now. How do things stand?

That’s a good question. We will soon formally announce that this year, we will be initiating our first two human treatment studies. In scientific timelines, that’s pretty amazing. Because you must remember that over the last 50 years, the treatments for Trigeminal Neuralgia have hardly changed. The same anti-seizure drugs, the same pain relievers, the same surgeries – very little has changed in that regard.  And rates of cure using the old treatments have been really disappointing – in over 50 percent of microvascular decompression surgeries, the pain returns in 10 to 12 years, according to the National Institutes of Health. And the NIH says that the other, less invasive, surgeries have to be repeated in one to three years. They also recognized that in many pain patients the surgeries and the medications aren’t working.

This year we will have our first two human studies. And we feel terrific about that. (The people for the studies will be chosen by the scientific researchers, not by the Foundation.) And in each of our other projects, we can see on the horizon, and are preparing for it, that we will be able to move toward the trials.  The Foundation has raised the necessary funds to pay for this research and the goals are becoming closer every day to being achievable.

Now some of these curative treatments may work for some and not for others, because there are those different causes. That is why we have to create different cures – to repair the myelin, to repair the nerves, to block the ability of the nervous system to send those pain signals to the brain. But we feel great about our progress during these nine years, and we’ll keep going until everyone has the opportunity to stop the pain.

MR: The Foundation is an all-volunteer organization. There are no paid employees. The volunteers handle communications, fund-raising, and all other functions. I volunteer my time because I know first-hand, as someone who has experienced and suffered from the excruciating pain of Trigeminal Neuralgia, how important it is to find a cure. How did you get the thousands of other volunteers to sign up?

I think we did an incredible job of speaking to the public. Remember when we got started, because of this disease, the suffering and the treatment, there were billions of dollars being lost annually in productivity and medical costs. And more important, and more humanly unaffordable, was how dearly the unfortunate people suffering from this disease paid in quality of life – their health and longevity and stability and dignity and independence, their careers and family roles, their relationships and social ties, their physical abilities, their shattered sense of hope, of meaning or purpose. Many of these people were totally disabled and many were reaching out and saying they’d rather be dead.

We had a very sad situation. Great strides had been made in curing other diseases or creating better treatments for them, but with Trigeminal Neuralgia nothing new had been achieved for more than 50 years. There were the same treatments for TN that had existed for a half century. So when we reached out with our communications to tell people that we wanted to create cures, and that we wouldn’t stop until we found the answers, we were readily and strongly embraced.

I think a part of it was that we expressed the commitment to be an all-volunteer organization – that nobody was going to make money off of this. That almost all of the money we collected – close to 98 percent – would go to the research projects.

And I believe that this was very meaningful to the scientists as well. Many of their institutions dropped overhead costs for us, knowing that we were a nonprofit organization paying for this research. So we saved money in that way too. And I believe that it was the right time and the right place for a group of us who had been working hard to assist people with this terrible pain, and the public appreciated what we were doing, and they joined us.

In addition, I think that 90 percent of our volunteers are sufferers or family and friends of sufferers. They are people who have first-hand knowledge of the terrible toll of this disease, and they are contributing, they are developing fund-raising events and other activities. They are an important part of this Foundation.  Without our volunteers we would not be able to fund the research to find the cures. 

MR: Is it still true that 95 to 98 percent of the donations go directly to the research projects. And how is this possible?

It’s absolutely still true. We have no employees. I think if you add up the amounts of money that we save as a result, it’s far beyond the money that we spend on the research.  Imagine hiring someone like you to do these articles for the Foundation, for the web newspaper. You’re not cheap, Merv. You’ve made a pretty good salary doing what you do. Just multiply that to all the little things that are done by all the volunteers – like a former college professor and a school principal who spend hours every week sending out thank you letters that are required by the I.R.S. for the donations. Imagine the volunteers who are meeting with the scientists on a regular basis, paying for their own travel costs to Canada or the U.K. or the East or West Coasts. When you start adding up the amounts of money that we are saving because of volunteers, it’s simply amazing what we’ve created.

MR: In the Foundation’s nine years of existence, how much money has it received in donations? How much more do you think you will need?

Cash coming in may have been $7 million, but the real number is closer to $45 million. Because we also have a program where we approach other foundations that give the money directly to our scientists – they prefer sending the money to the universities, for example. In many instances, people are giving in kind or matching money. Even the stamps we use for our envelopes are donated. It’s been very successful.

And another example is our Facebook page, which has been wonderful for getting donations. They can be $1 or $5 or $10 or $100 or $1,000, and they are anonymous. And much appreciated.

How much more will we need? That’s a great question. Much more, especially once you get to the human trials. For our first trial, much of it will be paid for by the National Institutes of Health, which is the first time something like this has occurred. But for the second trial, we’ll need probably another $3 million.

As an example, take Neurona, the company that was formed by Allan Basbaum out of U.C.S.F. for the neuro-stem research. Neurona raised close to $50 million to be able to take those neuro-stem cells and develop them, and they have 34 full-time scientists working on this project. Neurona has three directions they’re going – one is research on epilepsy, one is back pain and the third is Trigeminal Neuralgia and related neuropathic pain. They need those cells tested on animals by the very best testing service. We’re going to pay, at one of our centers, $370,000 to test those stem cells – which we believe are going to stop the pain and fix those nerves – on the animals.

When that is completed, Neurona is committed to putting at least millions into the Food and Drug Administration and clinical-trial approval process. We won’t have to pay for that. Neurona’s goal is to take the cures to the market.  This one example of how our FPRF scientific consortium can work.  In this case, the University of Florida, Neurona and us. This is  the first time there are three distinct organizations pulling together to get a research job done.  Neurona developed the cells, UF tested the cells and the Facial Pain Research Foundation covered the testing costs.  And how that happened was simply a matter of bringing those scientists together at our International Consortium of Scientists, which we hold at least every other year. And the the scientists work together on their projects. How that happened was simply a matter of the FPRF functioning in a leadership role to say how can we get this done. And it just made sense to do it this way.  And it’s not how things normally happen in scientific research.

MR: Both you and I have suffered from Trigeminal Neuralgia, and we both have been lucky. You, and other sufferers, have had a surgical procedure that has eliminated the excruciating pain. Others, like me, take medication that has been effective in keeping the pain at bay most of the time. But, as you’ve noted, the surgery and the medication don’t work for everyone, and often don’t last forever, and for the many others less fortunate, severe pain has been part of their daily existence. In truth, Trigeminal Neuralgia can be a fatal disease. It has historically been known as the suicide disease, and both you and I know of people who have so sadly decided they can no longer live with the horrible pain.  What can you say to those who still suffer? Why isn’t the research moving faster? And what can be done to accelerate the pace? Will there be a cure?

The first thing I would say to them is that I’m sorry we didn’t start earlier. We relied too long on the medical community to create better answers and better treatments. And I can say to them to have hope. To believe that a cure can really be found. If you look at our scientists, you’ll see this is something meaningful. They are outstanding in their fields. Take a look at our work and you can see that progress is being made and that you need to have hope and that there are great people working on this problem. And we’re going to get the job done. We’re committed to doing it and we believe it can be done.

It’s going to take more money. It’s going to take a great deal of money. But no scientist has said no to us, and we have been able to raise funds all along, not dependent on federal money, because we can’t wait for federal money. That system works for some, but it’s very bureaucratic. And we can’t wait for the government to pay for this research. We need it tomorrow because people are suffering.  We invite everyone to join us on this incredible journey to find the cures.