Email Notice

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.

 

 

 

 

First Published 12 January 2011

 EMILY'S STORY

 

By Laurel Garland

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

 

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

 

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

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

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

 

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

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

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

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

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

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

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

You can make a tax Deductable Donation right now.

 

Send Check To:

 

The Facial Pain Research Foundation

2653 SW 87th Drive, Suite A

Gainesville FL 32608-9313

 

OR CLICK THE DONATE BUTTON NOW

JOIN THE FACIAL PAIN RESEARCH FOUNDATION

In backing the scientists

 

 

OR AUTHORIZE A MONTHLY SUBSCRIPTION
One Hour of Research Costs $125.00

Success in answering critical questions about the role of genes in TN and other

nerve-related facial pains relies on private support. Here are ways in which donors

at all levels can join The Facial Pain Research Foundation in finding a solution:

  • Support full expenses of one patient      in the study:     $1,770
  • Pay for the genotyping of one research      participant:    1,100
  • Help with the phenotyping costs for      one participant:     600
  • DNA extraction from one person’s      saliva samples           40
  • Pay for saliva kit & shipping cost      for one participant      30
 

 

Three Time Emmy Award Winner

Tony Shalhoub Public Service Announcement

With

Brooke Adams and Diane Baker

  

 

 

 


 
Copyright © 2017 The Facial Pain Research Foundation. All Rights Reserved.
Joomla! is Free Software released under the GNU/GPL License.