Send  your Name and Email Address and receive more info on Foundation and Research info@facingfacialpain.org
   
   

 

 

 

Michael Pasternak, Ph.D., is a founding trustee of the Facial Pain Research Foundation. Dr. Pasternak

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 former member of the Tony Awards Nominating Committee. His first symptoms of trigeminal neuralgia occurred in 2005.

 

The Interview

 

By

 

Mervyn Rothstein

 

Michael, how did the Facial Pain Research Foundation, a multimillion Dollar research foundation to find cures for trigeminal neuralgia and related neuropathic pain, become a reality?

 

I think, Merv, first I need to remind you that I had the pain. That I am a survivor of that facial pain. And I am in a very sought-after group to be in. Because there are few people of the thousands of trigeminal Neuralgia sufferers I’ve known that have been as pain free for as many years as I’ve been. So I feel very special. And there was a moment when I realized that it was time for us to work toward finding a cure.

 

I’d been involved with the Facial Pain Association, formerly the Trigeminal Neuralgia Association, for many years as a volunteer and in leadership roles after I’d stopped having the pain.  I was fortunate to have a successful microvascular decompression surgery with Dr. Peter Jannetta. I had been a businessman and a college professor, and I always felt, because my mother had told me that I could, that I could be successful at whatever I wanted to do. Then, in 2009, two other members of my family got facial pain. It was at that moment that I felt that we really needed to have a cure.

 

For 50 years, the treatments that have been given to trigeminal neuralgia patients have worked for only some people and not for others. So I connected with several friends who had been with the Association for years – Roger Levy, who had been the chairman of the board, and Mike Hirsch, who had been the president of the association after me – and we went down to Marco Island in Florida and spent three or four days talking about how do we put together a research foundation to find a cure for TN, and for related neuropathic pain.

 

And that’s what we did. We brainstormed – and there certainly wasn’t a roadmap – and we decided to find some talented people, creative people, who were willing to admit they didn’t know what they were doing but were willing to pull together and create a foundation to find a cure. I approached Al Rhoton [Albert L. Rhoton Jr., M.D., founding chairman of the department of neurosurgery at the University of Florida College of Medicine], the most famous neurosurgeon in the world, and Doug Anderson [Douglas K. Anderson, Ph.D.], head of the McKnight Brain Institute at the University of Florida, and we continued to talk about what it would take to put together a foundation, and we grew it. The focus was we were going to find a cure.

 

How are we going to get rid of all this pain?

 

We’re going to get rid of it because we have found the best consortium of scientists in the world to work on it. These are outstanding scientists whom we approached, and we pulled them together, and we said, “We need your help to do this.” It’s a hell of a challenge. Imagine saying we want you to work on the most difficult problem there is – how do you stop the worst pain known to humankind? Now we have five research projects, working on different approaches to finding a cure.*

 

The scientists in the consortium believe in the concept of synergy, that the whole is worth more than the parts, that each group’s research supports, affects and benefits the other groups’ research. These are great minds, and I believe they’re going to do it. That’s basically our motto – we can do this. There are hundreds of scientists working on these projects in the five locations. Our goal is believable. And it’s going to happen.

 

Where does all the money come from to support the foundation’s research projects? How much does the foundation receive each year?

 

That’s a very, very good question. First, we have thousands of volunteers who have created opportunities for people to participate in fund-raising activities – everything from comedy shows to golf events to running and walking and wine-tasting, music events, the whole range.  All of these are volunteer-based.

 

We have people who send us $1 a month and many who send us thousands of dollars a year. We also have companies like IBM that send us money. We’ve had a number of people who have given large sums of money as matching grants. The Wasdin family has given $120,000.  A matching grant of half a million dollars came from the Cilker family.

 

There are many ways of raising money, and it’s the first time in history that people have been asked to donate specifically to stop pain. We’re going after pain. Pain is the disease here. Because if we could end the pain, we could stop the world’s most painful condition – which is trigeminal neuralgia, and the conditions related to that.

 

How do you get people to volunteer?

 

Well, Merv, how did we get you to volunteer? We asked you, and you said yes. I would guess most of our volunteers are people who are in serious pain and have been unable to resolve it with surgeries or medications, or people who have experienced the pain but have been able to resolve it or ameliorate it with procedures or medicines. Family members and friends volunteer too. They all are doing the fund-raising hunting for us. And they find us on our web newspaper, The Afternoon Edition.

 

Tell me about The Afternoon Edition, which is at www.facingfacialpain.org. I understand it’s the most visited of its kind. It has no advertising, and yet has so much information and is read worldwide. How does it get its stories?

 

The Afternoon Edition is really the brainchild of Mike Hirsch, who is the Chairman of Whitehall Printing Company. Mike had the belief that if he could create a newspaper that would speak in simple, lay person’s terms, that would explain the science and the pain, that would tell the stories of the people in pain, and that would do so in a very personal way, it would attract readers to the newspaper. And he was right.

 

All the stories are written by volunteers. The newspaper also shares information about all the research. And it also provides an opportunity for people who want to volunteer and become part of the foundation to do so.

 

What’s the toughest part of your leadership role? What keeps you awake at night?

 

That’s a difficult one. I would say the toughest part is the larger and larger number of people contacting us who are in horrible pain. Who are disabled. Especially those families where children have trigeminal neuralgia. That keeps me up wanting to be certain in my mind that we’re providing the support necessary for our scientists.

 

And also my concern that we are properly saying thank you to all those who are helping us. Sometimes I’ll pop up in the middle of the night and think, for instance, did I thank Frank Skoviera for all he’s been doing? That keeps me awake.

 

We’re at the point where the research is a reality. It’s over the hump. The foundation is happening. It’s no longer a question of whether it will happen. The scientists are working, and we’re waiting for the babies to be born. I go over and over in my mind, are we providing enough support for them? And are we

responding effectively to the people who are in pain and trying to keep their hopes up? Hope is important. This has been called the suicide disease by some, and you and I both know there has been a journalist

recently who took her life because of the problems related to the pain – she couldn’t stand it anymore. So dealing with those difficult situations sometimes keeps me up as well.

 

Why didn’t this research start many years ago?

 

I think we were naïve enough to think that the medical professionals – many of the neurosurgeons and neurologists – were going to solve the problem themselves. I think we were also ignorant enough that when they were giving us data – I mean outstanding surgeons, we’re not talking about quacks here, who were saying that on a good day they could fix 80 percent of the people who came into their offices – we forgot about the 20 percent, hoping we’d be part of the 80 percent.

 

But it became more and more important to look at that 20 percent and those whose pain returned later in spite of the surgery. We needed to also look at those who couldn’t have surgery and reacted badly to

medications.  These are the people who are going on disability, who are in horrible pain. It got to the point where even though in our earliest organization we said that research as an important goal, it wasn’t research to find a cure. It was research to better understand the disease, better understand how it affected patients. But it became apparent that we simply had to change, that we had to focus on the cure. It just took us time. I think we believed it was going to happen, but it didn’t happen.

 

At one point, we brought together seven neurosurgeons and neurologists in a room and interviewed them and asked them what they would do if we gave them all the money they needed to cure trigeminal neuralgia, and they didn’t have a clue. So we understood that we were speaking to the wrong group. That we really had to speak to the scientists and get to the basic science of what’s causing this problem in the nerves and the brain. And that’s what we’re doing.

 

 

How do you respond when someone asks you if the foundation’s research projects are really going to find the cure? What do you say to health professionals who say that there can never be a cure for trigeminal neuralgia and related neuropathic pain?

 

For the health professionals, I just ask them what planet they live on. In pretty much the last hundred years, it’s not much more than that, we’ve learned how to fly, created the Internet, found a cure for polio. One of our major reasons for starting the foundation was Mike Hirsch’s talking about President John F. Kennedy, who said let’s put a man on the moon in the next 10 years. Think about it, Merv. If you could put a man on the moon in 10 years you sure as hell ought to be able to fix a nerve in 10 years. That’s been one of our driving forces. It’s let’s get it done. Get the necessary resources together. Be very focused.

 

I’ve had some health professionals look me in the eye and say the only one who can solve this problem is God. And sometimes I feel like telling them, look, God put Al Rhoton and Mike Hirsch and Doug Anderson and the rest of us on this Earth to solve this problem. And we’re here and we’re going to get this done.

 

 

The Facial Pain Research Foundation Consortium

 

* “Nerve Myelin Repair and Growth,” Dr. Lucia Notterpek, University of Florida McKnight Brain Institute; “Cell Replacement Therapy as a Treatment for Injury-Induced Neuropathic Pain,” Dr. Allan Basbaum, University of California, San Francisco;  “Finding the Genes that Predispose to Trigeminal Neuralgia,” Dr. Marshall Devor, Hebrew University of Jerusalem, Israel, Dr. Kim Burchiel, Oregon Health & Science University, Dr. Ze’ev Seltzer, University of Toronto;  “Mapping Towards a Cure:

Identification of Neurophysiologic Signatures of Trigeminal Neuralgia Pain,” Dr. John Neubert, Dr. Mingzhou Ding, Dr. Marcello Febo, Dr. Robert Caudle, Dr. Todd Golde, University of Florida McKnight Brain Institute; “Novel Ways to Deliver Compounds That Can Eliminate the Pain of Trigeminal Neuralgia,” Dr. Wolfgang Liedtke, Duke University. Dr. Scott Diehl, Consultant, Rutgers University.

Facial Pain Research Foundation International Research Coordinator Dr. Joanna Zakrzewska, UCLH NHS Foundation Trust, London UK.

 

 

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Editorial Note

 

 

 

 

Mervyn Rothstein

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 former member of the Tony Awards Nominating Committee. His first symptoms of trigeminal neuralgia occurred in 2005.

 

 

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


 

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Mervyn Rothstein Interviews Dr. Allan Basbaum

 

 

Dr. Basbaum spoke by telephone from San Francisco with Mervyn Rothstein, who was an editor and writer at The New York Times for 29 years before retiring in 2010.

Mr. Rothstein is now a columnist for Playbill Magazine, where he writes the “A Life in the Theatre” column. He has had trigeminal neuralgia since 2005.   

 

 

 

 

Dr. Allan Basbaum is professor and chairman of the Department of Anatomy at the University of California San Francisco. A neurobiologist, he is recognized worldwide for his work in understanding the mechanisms that contribute to the development of chronic pain, particularly the neuropathic pains produced by nerve injury, a condition that he considers a disease of the nervous system.

He is an expert in the use of neural stem cells to alleviate neuropathic pain in animals and has been rewarded by long-term funding of his research by The National Institutes of Health. He believes that his research has demonstrated that it is possible to repair damaged neural circuits. His work will have major consequences for neuropathic pain, including trigeminal neuralgia and related conditions, phantom limb pain and the pains generated in the course of cancer chemotherapy.  

 

 

1. Why did you decide to focus on pain in your career? 

 

That’s an easy one. It was the need for a summer job when I was a student at McGill University in Montreal. Now you’ll figure out how old I am, but I was trying to get a job at the [1967] world’s fair in Montreal. I was on the waiting list to get a job at the fair, which everybody wanted, and I couldn’t wait any longer. And I saw an advertisement for a summer research assistant, not at the fair but in the lab of Ronald Melzack. I had taken a course with him, and I got the job.

 

He’s one of the godfathers of pain research. He and Patrick Wall had published a major paper in 1965 called “Gate Control Theory of Pain,” which revolutionized the way people thought about what causes pain, why chronic pain develops. They argued that pain is not produced exclusively by the activation of “pain” specific nerve fibers, but rather by the balance of activity in different types of peripheral nerve fiber, small diameter nerve fibers that respond to painful stimulation and large diameter fibers that, in fact, respond to innocuous stimuli.  The latter nerve fibers have the capacity to regulate pain produced by the small fibers. Gate Control Theory provided a new perspective not only on ways to regulate pain (i.e. by increasing the activity of the large diameter fibers) but also on a mechanism for the generation of neuropathic pain (i.e., dysfunction or frank damage to the large fibers). My summer job in the Melzack laboratory started my research in pain mechanisms, and I’ve been doing it ever since. If I had received a job at the world’s fair, I might be doing something different.

 

2. What led you to believe that pain is a disease?

 

Well, I wouldn’t say that all pain is a disease. I refer more specifically to neuropathic pain, namely pain associated with nerve damage. There’s clearly persistent pain that results secondarily from a particular disease, for example, arthritis. You have inflammation in the course of severe arthritis, and the inflammation causes pain. We understand some of the mechanism by which arthritis causes it. If you weren’t able to treat the arthritis, the pain wouldn’t go away. So arthritis is the disease. Cancer that hits tissue causes inflammation and the tissue damage causes pain. If you could get rid of the tumor the pain would probably go away.

 

 Neuropathic pain is different in that the damage is to the nervous system, and the only consequence is pain, so in a sense the disease is the damage to the nervous system and thus pain, in effect, is the disease that needs treatment. The nerve damage could occur after spinal cord injury, it could be peripheral nerve injury, or more specifically it could be trigeminal neuralgia. We’re not quite sure what the nature of the nervous system damage is with TN but there has to be some pathology in the nervous system. That is TN’s feature – its main feature is pain. That’s it. So you can try to treat the pain by suppressing it with drugs, sort of damping it down, but you’re not really treating the underlying pathology. It’s different if you use an anti-inflammatory drug in a patient with arthritis. You can help the arthritis and coincidentally the pain gets helped. But in the case of treating trigeminal neuralgia, when you give a drug you’re not treating the underlying condition at all. You’re suppressing its manifestation. Our approach is to say, all right, is it possible to actually treat the condition itself, namely the disease itself, whose only manifestation is pain? That’s our objective, to repair the damage.

 

Neurological associations will probably never accept this notion. They have very specific criteria for what is a disease. But I also think that it’s very important for the public to understand that there is a disease element to this type of chronic pain. The public generally thinks of disease as things that kill you, like cancer, like MS or Alzheimer’s, where you eventually die. And so their focus is understandably on the disease and not the aspect of the disease, which is often pain that ruins a person’s life. People don’t die of pain, but they often die in pain.

 

 The public needs to understand that if you could address the chronic pain problem in individuals that have these other disease conditions you will dramatically improve their quality of life. In other words, rather than just focusing on the arthritis or the cancer, it is critical to also address the pain. What ruins people’s lives is the pain. People don’t realize that individuals with spinal cord injury who are in a wheelchair – if you look at them and you are empathetic because they’re paralyzed and you think that that’s the major problem they suffer, they will tell you it’s terrible that they’re paralyzed, but 70 percent of them have horrific pain that ruins their lives, perhaps more so than being in a wheelchair. If you can get rid of their pain they would be so much better off. But nobody sees pain so they don’t recognize it. I think if we explain to the public that chronic pain is a disease, an entity in itself, especially neuropathic pain, they will be a little more understanding and perhaps more committed to solving the problem.

 

3. What is the importance of this trigeminal neuralgia research study, and what potential is there for having an impact on the study of other diseases and possible cures?

 

Trigeminal neuralgia, No. 1, is to many people considered the worst pain you can have – not that any pain is good, but trigeminal neuralgia is one of the most debilitating.

 

 No. 2, we believe because it’s responsive, like other neuropathic pains – sometimes, not always – to anticonvulsive drugs, it is really a condition in which there’s loss of inhibition, so that the central nervous system is hyperactive, as it is in epilepsy. We use an anticonvulsant to reduce the hyperactivity. If that is the essence of the disease, it might be possible to repair, literally rebuild the nervous system and overcome the loss without using drugs, which even when they are effective often have horrible side effects. That’s the big problem – drugs can be good, but it’s very difficult to come up with a drug to treat these kinds of conditions without having side effects that make patients miserable.

 

 So the idea here is to literally repair the nervous system. And that’s the approach we’re taking. We believe we can use transplants of precursor, so-called progenitor cells that have the capacity to develop into inhibitory nerve cells and reconstitute the inhibitory controls that are missing.  In the course of our studies, I have not only been excited at our ability to treat animals that manifest hypersensitivity in models of neuropathic pain, but am also overwhelmed at how plastic the nervous system is. The adult nervous system will accept these transplants and the cells will integrate into circuits. The host nerve cells make synaptic connections with the transplanted cells, i.e. communicate with the cells, and the transplanted cells make connections with the host. As far as I can tell the new circuits are permanent. We’ve now gone at least six months and shown that these cells continue to make beautiful connections, so that it really is possible to take advantage of the plasticity and malleability of the nervous system. And in that sense we are really targeting a cure, not just some salve. We are not just trying to suppress the pain – we are actually trying to treat the condition that generates it. That’s why I’m so excited about it. And trigeminal neuralgia is one of many neuropathic pain conditions that I believe would be particularly amenable to this approach.

 

4. Are you developing the cell-replacement therapies to be used clinically to treat neuropathic pain (including trigeminal neuralgia) or are you using them as a proof-of-principle preclinical research tool?

 

Well, at the moment it’s preclinical, but the success we’ve had is incredibly encouraging. We began in the mouse because we were using embryonic cortical cells as the source of the transplant. These are cells from the brain of an embryonic mouse that we know are the cells that normally make all the inhibitory neurons in the cerebral cortex. Although these are not normally destined to become the inhibitory neurons in the trigeminal nucleus or the spinal cord, they will survive and grow in these regions.  And of course, they form connections and importantly can treat the mice in models of neuropathic pain. It’s a model that we believe mimics what is happening in the human with neuropathic pain.

 

So that is the first step. And that is a proof of principle, a very exciting proof of principle. Then the next step, which we’re doing, is using embryonic stem cells that have been modified to become inhibitory neurons. Here we’re talking about a human cell, human embryonic stem cells. And we transplanted them in the mouse, and they survive, grow and are functional.  We have to use immunologically suppressed mice otherwise the mice would reject the human cells. So now we have proof of principle that human cells can be effective in an animal model of the human condition.

What’s the next step? To get the cells to a state where you can actually reach the quality where you can transplant them into a human. There’s no question that our objective is to take this into the clinic.

 

 Somebody inevitably asks: when is this going to happen? I don’t answer questions like that because I honestly can’t predict. But is that our objective? Unquestionably. We’re working with the stem cell people at UCSF to get these cells to a condition where they can be used clinically, and I’m much more optimistic than I’ve ever been that we’ve got a handle on something that can work. It’s because of the remarkable ability of the nervous system, of its circuits, to be manipulated. I really didn’t think that the system was that plastic, but it is. The adult brain and spinal cord will accept those cells, I think in a therapeutic way.

 

5. This question is something you just alluded to, but when do you envision (or hope) that cell-replacement treatments for neuropathic pain (including trigeminal neuralgia) will be ready for use in humans?

 

 As I said, I can’t predict the future. There are so many steps hurdles that have to be crossed. The first thing is to get the cells to a state where the Food and Drug Administration would accept a transplant. That’s more a stem cell expert issue. We use the stem cells that our colleagues provide to us. They continue to address this need and of course the whole stem cell field is growing at a tremendous rate.  So I don’t think it should take too long to get the cells to that stage. Stem cell therapy is being used very preliminarily in other conditions now, and I think it’ll grow exponentially within the next five to ten years. With respect to chronic neuropathic pain we believe that we understand how the cells can be used and where they should be transplanted. So in my mind the major barrier is to get the stem cell people to tell us that yes, these things are ready to be put into people. We believe that the therapeutic proof of principle is established and that the fundamental biology, between what we’ve seen preclinically and what we believe occurs in humans, is solid.

 

 I am confident that the neurosurgeons are ready to take this to the clinic. They know about the work and are following it closely. I’m going to give a talk at the annual meeting of the Society of Neurological Surgeons. They recognize the need for a novel, exciting and feasible approach and want to learn more about what we are doing. But will it be next year? No. Five years? Possibly. I really don’t know.

 

6. Perhaps you’re already answered this question, but what are the biggest obstacles you face in translating your preclinical findings to the clinic?

 

It has to do with the quality of the stem cells, to be sure that they meet all the standards to put into a human. One needs to demonstrate unequivocally that the cells don’t become tumors, because there’s certainly an ongoing concern that some stem cells might become tumors. Our data so far says that the stem cells we’ve worked with do not become tumors. They don’t have tumor markers and are not proliferative. So that’s very encouraging. This is one of the major issues that one has to be concerned about.

 

Always, with any therapy, there’s the potential for adverse side effects. So far, we haven’t seen these in the animal models, but there may always be some unexpected adverse side effects when you use a new therapy. One of the first things, especially when you’re dealing with pain studies in animals, is that you don’t have motor side effects. We haven’t seen these so far – that’s encouraging. 

 

We’re talking about a therapy meant to rebuild parts of the nervous system, so it’s always possible there will be unexpected side effects. We don’t anticipate them, but those are the things we need to watch for. One of the first things you want to know is not so much does it work but is it safe. This is key. You’re dealing with a patient who has a long life span, so safety becomes incredibly important.  

 

7. The Facial Pain Research Foundation is moving forward with a sense of urgency to find cures for trigeminal neuralgia and related facial pain. Why have you linked your efforts to such a new organization in the field of pain research?

 

That’s an interesting question. Why? I usually don’t answer ‘why’ questions, but rather where, how and what. I recognize that these facial pains are among the worst pains that patients can experience. I believe that the neurosurgical approach to therapy is very feasible in these individuals. And the neurosurgeons agree. So the type of therapy we’re proposing, namely using transplants is rationale to the neurosurgeons, particularly as the target for transplantation is known and accessible. These are places the neurosurgeons have gone in previously, and it’s a very doable procedure. It’s a very discrete type of pain, and the area that’s involved is quite localized, to one side. That’s also advantageous.

 

Contrast that for example with a patient with chemotherapy-induced neuropathy, which can be associated with terrible pain. But here, for example, it can be in both hands and the feet. That’s a systemic, widespread disease, because the drug acts everywhere. For this reason it may be very difficult to pinpoint the particular area of the nervous system that you want to treat. But in the case of trigeminal neuralgia and facial pains, the target is restricted. It makes sense to target something that is so focused, because then the cells can really do their job. It’s a very tractable system.

 

And the other reason is that I was impressed with the Facial Pain Research Foundation, and its enthusiasm to get financial support. Our lab is well funded; that’s great, but these are expensive studies. And as I said previously, the study of pain is not something that the philanthropic world tends to support. Families tend to support the diseases that kill their loved ones, even though the pain clearly destroyed their quality of life.

 

8. 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 questions?

 

Until we started this type of work, I would have said, “A cure, probably not; the idea is to come up with something that can ameliorate the condition better than what exists now.” Now we have a better understanding of the nature if you will of the neurological problem, of the damage that has occurred. As a result our approach is truly reparative, i.e. disease modifying. We want to rebuild parts of the nervous system, and in that sense we are trying to develop a cure rather than just to ameliorate. This is an unusual opportunity to dream of a cure rather than just palliative pain management.

 

 

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Columnist Mervyn Rothstein

 

Interviews Dr. Kim Burchiel

 

 

Dr. Kim Burchiel is a co-principal investigator in the Facial Pain Research Foundation’s trigeminal neuralgia project. As the John Raaf Professor and Chairman of the department of neurological surgery at the Oregon Health & Science University in Portland, his interests include functional and stereotactic neurosurgery, pain surgery and epilepsy surgery. His colleagues in the trigeminal neuralgia project are principal investigator Dr. Marshall Devor of the Hebrew University of Jerusalem, Israel, and Dr. Ze’ev Seltzer, a professor of genetics at the University of Toronto. The project is called "In Search of a Cure ... Finding the Genes That Predispose to Trigeminal Neuralgia." Its goal is to identify the genes that make people susceptible to TN or cause the pain, and then move toward prevention and cure.

 

Dr. Burchiel spoke by telephone from Portland with Mervyn Rothstein, who was an editor and writer at The New York Times for 29 years before retiring in 2010. Mr. Rothstein is now a columnist for Playbill Magazine, where he writes the "A Life in the Theatre" column; he is also a member of the Tony Awards Nominating Committee. He has had trigeminal neuralgia since 2005.

 

Some people are surprised that a person of your professional stature in the world of neurosurgery is involved in research that has a DNA focus.  Why have you decided to take on a leadership role in this genetics research project?

 

I’m more committed to solving the problem than I am to any particular solution. So if it turns out that we can discover the origins of this condition it may well be that surgery may not be the ultimate answer.

 

Why have you decided to focus on pain in your career? 

 

Very few neurosurgeons choose to focus on pain, because it is a difficult specialty. It’s often frustrating for both the surgeon and the patient. It actually involves the surgeon frankly saying at some point, "I don’t know. I can’t help you." And surgeons hate that. They like to have an answer. And you have to be honest enough and humble enough, I guess, if that’s possible, for a surgeon to say, "I don’t know what’s wrong with you." The flip side of that, honestly, is so much can be done in the pain world. Pessimism didn’t cure anything. You have to approach this with optimism and with science. I think those two things go a long way. A lot farther than most people would think.

 

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

 

I am excited about this research because the opportunity here is enormous. Not just for understanding trigeminal neuralgia but understanding neuropathic pain of other forms, which is a general condition that has been to a large degree the Holy Grail of pain research for my entire career.

 

What steps have you taken to be certain that the DNA samples that are being collected are from people who have experienced trigeminal neuralgia?

 

We developed a way to describe and define trigeminal neuralgia which is quite precise. This is a so-called Type One trigeminal neuralgia which in the past has been called classic trigeminal neuralgia. But we put a definition around that which made the separation of people with this condition very clear from people that don’t have the condition. And that’s the first time that’s been done.

 

We understand that at OHSU you are approaching the collection of the first 100 patient DNA samples and that the goal is to complete another 400 at eight additional Collection Centers.  When do you think that the total 500 will be collected and what will that number provide your research scientific team?  

 

We are in the process of getting the other centers up and running right now and my expectation is that within about a year to 18 months we’ll have all the samples collected we need to complete the DNA collection. And then the genomics, the genetic side of it, will take another six to nine months, my guess.

 

What are the "next steps" in moving toward a cure after the collection (phenotyping) is completed?

 

The collection is simply getting the DNA, but the most important thing now is to run these samples on a gene analyzer that will give us an enormous amount of information. But the information has to be processed in such a way as to make sense of the information. So this really would come under the heading of Big Data. We’re going to get an enormous amount of data. The heavy lifting is the analysis of the data, to make sense of it. Because we’re talking about analyzing millions of genes per person. We’re going to get an enormous amount of information. So it’s what’s called Informatics. The data processing is going to be the really big part of this process.

 

The Facial Pain Research Foundation is moving forward with a sense of urgency to find cures for trigeminal neuralgia and related facial pain.  Why have you hitched your efforts to such a new and relatively unknown foundation for pain research?

 

Well, first of all, they approached me. That’s a simple answer.

 

But why did you agree?

 

I agreed because I think trigeminal neuralgia is a unique opportunity. Because of the clarity with which we can make this diagnosis we have an opportunity to explore a condition with what we think is a very uniform population that has the potential to produce an answer. When we talk about other pain conditions the variation is so great that the ability to extract the common signal from the data is extremely difficult. But trigeminal neuralgia is such a clearly and precisely defined entity that there’s no mistaking it for something else, and in that way what we’re doing is proving the resolution of our data, meaning we’re going to get a much clearer picture of what’s going on.

 

Each day people are contacting The Facial Pain Research Foundation with stories of failed surgeries and medications they experience in trying to stop trigeminal neuralgia pain...that their pain is getting worse.  What encouraging words do you have for these people? 

 

The most encouragement I can offer is that treatment of pain is a very difficult enterprise. For patients with trigeminal neuralgia the prognosis for treatment is actually quite favorable. Obviously any treatment of any type will have some patients that fail tradition therapy. And it’s hard for someone who has failed the therapy to be appreciative I guess of the fact that most people actually do therapy well. I think the things I can tell someone who’s failed therapy is to make sure they’re seeing in terms of a consultant the right person, someone who has experience and has committed, dedicated experience in this area. Because only in that way will they get what I think is the best possible answer, not only for what they have, why they might have failed and what the next steps would be, but also what not to do, because many people with failures go off and have further treatments that may be either ineffective or dangerous. So if you’ve failed once, if anything it makes it even more critical that they find someone that really knows the field and is committed to this diagnosis, to get the best possible suggestions for further therapy.

 

How can they help the scientists working toward cures?

 

I think right now the centers we’ve recruited – I think it’s going to be important to support those centers so we get the right numbers of folks in the near term, to go ahead and get our 500. We hope based on that additional data collection and the run that we do with it with the genetic studies, that we will obtain either an answer or at least clues to what the next steps might be for us. We have a lot of other ideas about things we might pursue. For example, we have talked about and will be doing some preliminary analysis on individuals that are said to have family that has had a trigeminal neuralgia past. That could be a difficult analysis because often we don’t have those other family members available and we can only validate the diagnosis within other family members if we have those people at hand. So if there were people out there – they’re probably not very common – that had a blood relative that had a bona fide case of what we call Type One trigeminal neuralgia, those people we really want to talk to, because that might give us some clues about the inheritance of this condition. We don’t believe though that this is a simple genetic inheritance. It must be multiple genes that contribute if it is genetic, which we do think it is. So family members with Type One trigeminal neuralgia would be highly valuable particularly if we can talk to them and sample their DNA.

 

That’s one way they can help. And the other is just to support the Foundation in its work. This is just the beginning. We have many other projects that the Foundation is going to be pursuing. This is where patients and families of patients with facial pain can really make an impact, because they can direct their resources to these very, very specific questions that are driven by what I think are world-class experts like Dr. Devor, Dr. Seltzer, myself. So even though it’s not a common condition, it is a very pivotal condition and one that the support groups can get behind and really move this forward. It may not only advance, as I said before, the treatment of this condition but many, many other pain conditions once we begin to crack the code.


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Distinguished New York Times Journalist

Mervyn Rothstein Interviews Famous

Pain Researcher

 

Dr. Marshall Devor

 

By Mervyn Rothstein

Dr. Marshall Devor of the Hebrew University of Jerusalem is principal investigator for the Facial Pain Research Foundation’s first international research project to find a cure for trigeminal neuralgia. The project is entitled “In Search of A Cure ... Finding The Genes That Predispose to Trigeminal Neuralgia.” It is based on the concept, first enunciated by Dr. Douglas Anderson, a foundation trustee and director of research programs, that there is a likely genetic basis for trigeminal neuralgia. Dr. Anderson had noticed that the anatomy of compressed nerves and lesions that is a likely cause of trigeminal neuralgia was seen in many people but only a few had trigeminal neuralgia. Professor Devor is an award-winning scientist who has had a long and significant career in pain research and has contributed considerably to our understanding of the neurobiological basis of neuropathic pain. He is a laboratory head and former chairman of the Department of Cell and Developmental Biology at the Institute of Life Sciences at Hebrew University. He is also a founder of the University's Center for Research on Pain. His undergraduate and graduate work was done at Princeton University and the Massachusetts Institute of Technology.

Dr. Joanna Zakrzewska of London, England, the Facial Pain Research Foundation’s international research coordinator, contacted Dr. Devor to prepare a research proposal for the project, which was approved by the foundation. Dr. Devor is leading the research project, whose other principal investigators are Dr. Kim Burchiel, Chairman of the Department of Neurological Surgery at the Oregon Health and Science University in Portland, Oregon, and Dr. Ze’ev Seltzer, Professor of Genetics at The University of Toronto.

Dr. Devor, 64, a native of Toronto, Canada, was one of seven winners of the 2012 EMET Prize for Art, Science and Culture, an annual honor given to Israeli citizens for “academic and professional achievements that have far-reaching influence and make a significant contribution to society.” He split a $1 million prize with the other winners.

Mervyn Rothstein, a retired editor and writer at The New York Times who has trigeminal neuralgia, spoke by phone from New York City to Jerusalem, Israel with Dr. Devor about the professor’s research goals. What follows is an edited version of their conversation.

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Dr. Ze'ev Seltzer

 

 

Columnist Mervyn Rothstein Interviews Dr. Ze’ev Seltzer

 

Dr. Ze’ev Seltzer is a co-principal investigator in the Facial Pain Research Foundation’s trigeminal neuralgia project. A professor of genetics at the University of Toronto and an award-winning scientist, he has dedicated his career to studying the neurobiology of pain and brings to the project 37 years of research. His colleagues are principal investigator Dr. Marshall Devor of the Hebrew University of Jerusalem, Israel, and Dr. Kim Burchiel, chairman of the Department of Neurological Surgery at the Oregon Health & Science University, in Portland. The project is called “In Search of a Cure ... Finding the Genes That Predispose to Trigeminal Neuralgia.” Its goal is to identify the genes that make people susceptible to TN or cause the pain, and then move toward prevention and cure.

 

Dr. Seltzer spoke by telephone from his office in Toronto, Canada, with Mervyn Rothstein, who was an editor and writer at The New York Times for 29 years before retiring in 2010. Mr. Rothstein is now a columnist for Playbill Magazine, where he writes the “A Life in the Theatre” column; he is also a member of the Tony Awards Nominating Committee. He has had trigeminal neuralgia since 2005. 

 

Why did you decide to focus on pain during your career? 

I got interested in the duality of the brain-mind issue even before going to study dentistry. At the time, I was not that much interested in treating people directly as much as understanding how the brain operates and how cognition is produced. Pain has always been a favorite example or a test case that neurophysiologists who were interested in the duality of the brain-mind have chosen for their study. And philosophers did so as well. I even found not long ago when going through old stuff that I still keep – love letters to my now wife – I found a letter from the age of 21 where I wrote to her exactly what I just said. Which is that I am very interested in this aspect of life and that I will aspire to make it the subject of my professional work or endeavor-to-be. I went on to study Dentistry at Hadassah Hospital in Jerusalem, and during those studies I was exposed to the late Professor Yeshayahu Leibovitz, a philosopher of the brain-mind problem. He was also a teacher at the medical school, and taught us medical biochemistry. Hearing about my interest he advised me to take a course that he taught about the brain-mind problem. I took the course and my interest grew bigger. I was debating whether to tackle the brain-mind from the perspective of the brain or that of the mind and thought that doing it from the perspective of the organic side, the hardware side of our brain, would be a better approach than dealing with it from the software side, from the mind perspective.

I studied for a master’s in neurobiology and met Marshall Devor at a conference and he told me that Patrick Wall, who at the time was the leader of pain research in the world, had just moved part-time to Jerusalem and had established a lab, and I might consider coming to do this research at their lab. Marshall was at the time a young post-doc in Patrick Wall’s lab. This is how I started. I decided that my career would be in pain research. Working with Marshall under Patrick Wall’s guidance was actually what led me to the field, which I haven’t left. 

You have said that this is the most important study to be undertaken regarding trigeminal neuralgia and other painful conditions affecting the nervous system. Why do you believe this to be so? 

The importance comes from the fact that up until now most approaches to studying trigeminal neuralgia have been incidental, in the sense that other drugs that were developed for other uses, such as epilepsy, ended up by pure serendipity to be found to have an effect on trigeminal neuralgia, as you know personally. There has never been an attempt to study TN properly. By that I mean there are two approaches that are used in pain research. One is to develop an experimental pain model in an animal that imitates the human pain syndrome, and study the mechanisms associated with producing pain and its maintenance and try to develop cures or palliative treatments based on what we find. We do not have to this day a model for TN, not even for most other facial pain syndromes. The other approach is to study the disease in humans and this resulted in a few clinically important treatments but not to a better understanding of the pathophysiology of TN that still puzzles us.

The approach we take now is to go to the source code, i.e. the genetic code that comprises a complete set of recipes the body uses to construct its components and systems (aka, The Book of Life), including the nervous system that produces pain, and start from there. This has never been undertaken for TN or other orofacial pains, and this is the approach that we have begun to take now, which is to try to understand what differs in the genetic code of those like you who have developed TN, and others who have not. We hope that this approach will enable us to identify the mechanisms of TN by way of the identity of the gene or genes that play a role in producing the disease. Once we know the identity of the genes that encode the proteins that engage in the production of the disease, we will then be able to tag them by way of immunocytochemistry and then identify in the brain of a mouse or a rat the types of neurons and glial cells that express those proteins. This is also expected to identify the neural pathways in the trigeminal system where these proteins are expressed. And, by changing the proteins from the normal proteins in individuals who do not have chronic pain to that form that produces the disease, to see how this triggers the disease, and then study how to blunt the gene or suppress it or substitute it or treat it. This way we will be able to either treat individuals with TN or prevent them from developing the disease from the outset by patching the genome from the earlier stage by replacing the faulty gene with one that is not causing TN. These are some of the things we aspire to get to later on once we identify the genes that are at fault. 

You have also said that your research team believes that you can come up with a cure in eight years if you have the funds to complete your study. What reasons do you have for expecting such useful results? 

I don’t want to be overly optimistic at this stage, but if we had the money needed right away – and I’ll come to explain what we mean by the money needed – we would then collect as many pain patients for TN as possible and compare sequence of all the letters that comprise the genome. This costs between $3,000 and $5,000 a patient. Many thousands of pain patients would be needed, and if we had the money to collect them into the study we would be able to come up with the identity of many if not all of the polymorphisms, or genetic variants, that cause the disease in TN patients. 

Collecting thousands of TN patients worldwide would take a few years. Identifying the variants by sequencing their genome would take about a year, then another year to do the statistical work and some additional genetic analysis and replication experiments. From that moment onward, once we know the polymorphisms, there would be an analysis of the mechanism that enables those polymorphisms to produce the disease, as well as pharmacological research to identify druggable targets and devise drugs that could then be tested directly on individuals who carry those specific polymorphisms. Using the same genetic knowledge we would select from all those with TN, those who carry the mutations on the gene that was used to develop the drug and test the drug directly on those individuals that carry that particular, specific polymorphism. So using not only the genetic knowledge to create a drug for the appropriate targets but to select genetically the subjects for the clinical trial - is going to make the trial cheaper and shorter, and within a couple of years or less we will be able to answer the question of whether that particular drug was a happy follow-up. So in about eight years could be enough to answer questions about the first targets. 

You have been studying the genetic abnormalities that predispose carriers to develop chronic pain following limb amputation and mastectomy. How does this work relate to the trigeminal neuralgia project?

Excellent question. Obviously there are differences between chronic pain following trauma or surgery (i.e., phantom limb pain or stump pain in limb amputees and after removal of the breast or its part in women with breast cancer) and trigeminal neuralgia. But both entities share similarities. And the similarities have to do with the fact that some of the drugs that are effective in TN are also effective in other forms of neuropathic pain. Which means that they operate on similar neural cell types, and pathways, similar neural mechanisms. 

Therefore we believe that if we were to screen the genome of women post-mastectomy and of men and women following a limb amputation we could identify genetic variants that not only play a major role in the pain of those entities (for which we have at the moment more than 10,700 DNA samples) but also of TN (for which we will only have up to 500 samples in our present project). My team in Israel has collected about 250 Israeli veterans who lost a limb in combat, and another large team has recently completed the collection in Cambodia of 6,000 amputees who lost a limb mostly after stepping on a land mine. We also collected in Israel 650 women postmastectomy and an ex-doctoral student in my lab in Jerusalem, who is now at the University of Pittsburgh, has also collected a cohort of 650 women postmastectomy. In Toronto another team from my group collects 2,000 patients post-cardiac and thoracic surgery. Our colleagues in Germany have collected 1,200 limb amputees for this project. These huge numbers give us the statistical power to screen the whole genome and find common and rare genetic variants for neuropathic pain. Then we could go back to the TN cohort and test specifically for those genetic variants. Using the statistical power of the Cambodian, Canadian, German, Israeli and American cohorts to identify common and rare genetic variants and going back to the TN cohort to identify whether those variants play a role in trigeminal neuralgia as well, should make the Foundation’s TN genetic study more effective. 

What will you learn from the genetics of TN that can be used to help patients of other diseases and disorders? 

It’s the same answer, but going the other way around. Given there are shared genetic variants between TN and other facial pain syndromes as well as chronic pain syndromes post-surgery or trauma, if we found the gene or genes that are important for TN, we might go to cohorts of other neuropathic pain entities and see if that gene or other genes play a role there as well.  

The Facial Pain Research Foundation is moving forward with a sense of urgency to find cures for trigeminal neuralgia and related facial pain. Why have you hitched your efforts to such a new organization in the field of pain research? 

I have been in the field of pain genetics for nearly two decades and waited to see coming up an organization comprising pain patients driving science to find a cure. They have the best vested interest in seeing this field progress. If we are successful in using this approach with TN, the hope is that pain patients worldwide, suffering from many other chronic pain syndromes will organize to help solve this problem, because they are the victims, the patients, with the best interests.

As of now, unfortunately, genetic projects are very costly, and drug companies are still reluctant to invest the money. Governments are carefully watching this field grow but do not support cohort collections and do not support well enough the genetic work. This has been very, very frustrating for me and other pain geneticists worldwide, because despite the knowledge and the methodologies that are already out there, there’s a lack of funding that stops this field from growing more rapidly, as have other fields of the human genome –involving cancer and cardiovascular, neurological, psychiatric and many other diseases. They are already deep into the game, whereas we at pain genetics are still at the early stages, mainly suffering from lack of funding. Therefore, seeing pain patients taking the initiative is heart warming, because now we can really help them find a cure. 

Once you discover the genes (or patterns of genes) responsible or identify the gene defects that affects a person’s vulnerability to TN pain, 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? 

There are tiers or levels of resolution of the genetic analysis, or genetic depth. The most appropriate or current one, for which there is already the methodology at hand, is to do genome sequencing. But this is extremely costly. Therefore, we will have to do an intermediate step that is less deep to show the Foundation that we are able to find genetic variations that are of relevance for TN – to increase the appetite of the FPR Foundation, and to prove that this is a worthy approach. We will then look into the mechanisms and identify druggable targets, as I described earlier on. So finding the genes is not the end of the road, but just the beginning.

Each day people are contacting The Facial Pain Research Foundation and telling them that the surgeries and medications they have experienced in trying to stop trigeminal neuralgia have failed . . . that their pain is even worse. 

What encouraging words do you have for these people? 

The disease in most likelihood is genetic. We know that this is the case because there is higher incidence of TN in certain families. So my answer to them is that the big hope now is that genetics is going to solve the problem by combining genetic knowledge with pharmacological approaches that will be more fitting for the disease.  

What can you say to people to try to influence them to support the Foundation’s research efforts? 

Mainly that they should understand that none of the solutions that are offered to patients nowadays are perfect. In essence they are far from being perfect. Every treatment that has been tried has side effects – whether it is cutting the trigeminal root by a knife, or drugs that are non-specific in that they affect other parts of the brain or the body. There’s always a cost. What hasn’t been tried as yet is to go back to the Book of Life, to the set of codes that construct the nervous system and produce pain in those unfortunate individuals who inherited the bad genetic variants, and identify them and try to solve the problem right from the root.

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First Published Monday, 23 May 2011

 

 

Distinguished New York Times Journalist

 

 

Mervyn Rothstein writes for our webnewspaper

 

 

 

TN and Me

 

 

By Mervyn Rothstein

 

 

 

I’m a lucky guy.

 

 

Yes, I have trigeminal neuralgia, but although sometimes the pain can be very electric and very difficult, so far, knock wood, it is not as bad as what some of the victims I have met, or read about, must deal with.

 

 

Yes, I am a very lucky guy.

 

 

When I was growing up, I had a goal – to write for The New York Times, and to write about the arts. Sometimes, in my 20s, I changed my mind, but eventually I came back to that career wish. And it was granted. For 29 years, I was a writer and an editor at The Times. Six of those years were spent in its arts department, as theater reporter, theater editor of the Sunday Arts and Leisure section, assistant editor of that very prestigious section. I also had many other jobs there – staff editor in the metropolitan news department, education reporter, real estate reporter, deputy editor of its “Escapes” travel section.

 

 

I love the arts so much that I began writing about it freelance, and have written for Playbill Magazine for 20 years, as well as for two specialized magazines, Wine Spectator and Cigar Aficionado. I write a monthly column for Playbill called “A Life in the Theatre,” about folks who have devoted their lives and careers to the stage.

 

The list of people I’ve had a chance to meet, and to interview, can take up several pages, but this will give you an idea: Madonna, Saul Bellow, Toni Morrison, Philip Roth, Stephen Sondheim, Neil Simon, Angela Lansbury, Nicole Kidman, Tom Selleck, Demi Moore, Kathleen Turner, Jerome Robbins, Garrison Keillor, John Updike, Kirk Douglas, Sammy Davis Jr., Arthur Miller. There are several hundred more.

 

 

And to top it all off, I’ve been married for 39 years to a wonderful woman, my wife, Ruth. And we have a great daughter, Jill.

 

 

Very lucky.

 

 

So when in the spring of 2005, the day before my wife and I were heading off to Paris, I felt a sudden, intense pain in my mouth – on the right side, in a space between teeth, where I was scheduled to have a bridge installed when I got back, I was annoyed but thought nothing of it.

 

The pain went away for two days, and then, on our first full day in Paris, it came back strongly. I went to a Paris dentist, who thought it was a tooth – a familiar story to TN sufferers who encounter dentists and doctors unfamiliar with the disease who think it must be something in the mouth.  When I got back, my New York dentist thought the same, and he sent me to an endodontist for a root canal – of course. I’ve heard of people who have five teeth removed, or five root canals, until someone realizes the problem is elsewhere.  I had just one root canal.

 

 

I was lucky.

 

 

After the root canal, and the novocaine, the pain went away – for a while. It came back a week or so later, worse than before, and I went back to the endodontist, who happily figured out what must be going on – it’s trigeminal neuralgia, he said, and he sent me to a facial pain specialist. I’ve got TN in the bottom branch of the nerve.

 

 

 

The specialist prescribed Trileptal, which eventually helped, and miraculously the pain disappeared again – for 16 months. But when it came back, he and the other doctors I went to, including neurologists who had no essential concept of TN,  couldn’t help. And he and others I saw didn’t seem to know that there were alternatives to the pain other than medication – the surgical procedures that might makes things better.

 

 

But one of them suggested a neurologist, Dr. Jeffrey Cohen, who had real experience with TN. And he gave me the name of Dr. Jeffrey Brown, who has years of expertise in treating it. Both are involved with TNA The Facial Pain Association, and without them who knows where I’d be today.

 

 

I had a stereotactic radiation treatment, and it helped, keeping the pain away for nearly three years (though the pain has returned intermittently, especially in the last several months, and, as we all know, may return again, at any moment, unpredictably, for no reason).

 

 

Yet I’m a lucky guy.

 

 

The treatments for TN, as we all also know, are no guarantee, and often cause nerve and facial injury, or numbness, or both, and while certainly better than no treatment at all are an incomplete answer.

 

 

We need a cure. TN has for too long been an “orphan disease,” largely ignored by the medical establishment, in part because there are (happily) not tens of millions of victims. But nonetheless, many people are suffering, and sometimes suffering horribly. We need a cure. We need to raise money to find that cure. That’s why I’m here, and that’s why I’ll be writing regularly for this Web site, about people who have TN, about people who are raising that money to find a cure, and about the medical researchers who are seeking that cure. My goal is to do anything I can to raise consciousness about this horrible scourge.

 

 

Writing about TN, helping in this admittedly small way, makes me proud. Having the chance to meet and talk with and interview these people, these truly wonderful people, just as I have done with those hundreds of creative artists, is another goal I’ve set for myself, one I hope to meet, beginning now.

 

And I hope to remain a lucky guy.

 


 

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