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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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