The Agony of Atypical Trigeminal Neuralgia (ATN) and the Reasons Behind It

"Ouch," 12" x 9", 2016, mixed media on paper.

I’m in a few great online support groups these days that cater to the often devastating pain condition known as atypical trigeminal neuralgia (ATN), which, in short, is a type of face pain that is a constant sense of deep burning, pressure and aching that can occur on either one or both sides of the face. In my case, the pain is localized in my upper right maxillary jaw around the eye tooth area, which I feel both superficially in the gums and deep in the bone.

There is another related face pain condition, called trigeminal neuralgia (TN), which is pain that is NOT constant, but rather comes on suddenly and sporadically with fierce shooting pains along one of the pathways that make up the trigeminal nerve in the face. Usually, a patient has one or the other of these pain conditions, but lately I’ve been hearing about patients who start out with TN, then morph into the more constant ATN, which they say is far worse as there is never a reprieve from the symptoms as there is with TN. For the purposes of this essay, I’ll only be talking about ATN.

What is surprising to me in these groups is that so few patients (really none) talk about what I believe is one of the most significant underlying causes of ATN, which is an undiagnosed blood clotting disorder. In my own case, I started with ATN very abruptly in 1999 (after years of mysterious fatigue symptoms), right at the same time I was diagnosed with a blood clotting disorder called Essential Thrombocytosis (ET), which means that I have too many platelets. ET is one of the four myeloproliferative neoplasms, and they are all extremely rare. Most are due to a genetic defect on the JAK2 gene, which I have.

There are countless OTHER blood clotting disorders, of course, and when I went in search of why I had this horrendous face pain back in 1999, my research directly led me to the theory that this pain and my blood clotting disorder were profoundly related. (I was lucky enough to be a medical writer and editor in those days, and so had access to many studies not available to the public.)

In my case, they were so related, in fact, that over time, I would eventually lose all of my teeth to a condition called osteonecrosis of the jaw, which is a disease where the bone surrounding a tooth has begun to die, usually after some kind of dental work, like a root canal. If you think about it, it makes perfect sense, as if one has a clotting disorder, the person’s blood would not be able to reach the area that needs blood flow in order for the bone to heal.

My case was very extreme in that I lost all of my teeth (that is NOT the case for most patients), but the pain in my upper maxillary jaw started long before the teeth extractions began, shortly after a few root canals. For most ATN patients, I believe they’ll have some type of dental work, and months or even a year later will begin with the horrendous symptoms that only an ATN patient can understand. They make never make the connection that it was the dental work that started their nightmare, nor are they aware that they could very likely have a blood clotting disorder that has never been diagnosed, which is contributing to the whole mess.

For many years, cutting edge oral surgeons nicknamed this pain condition NICO, which stands for Neuralgia Inducing Cavitational Osteonecrosis, but as it was never accepted by the ADA as a real diagnosis (some even deemed it quackery), these surgeons were forced to change the name of the disease to osteonecrosis of the jaw and/or cavitational surgery. If you decide to google the whole thing, I would stick to “cavitational surgery” as your search terms. (A note about the ADA: It never once deemed mercury amalgam fillings as dangerous to the body, not even now, but I dare you to find a dentist anymore who treats a cavity with an amalgam filling, opting instead for composite fillings. This change happened as a result of public demand, NOT a decree by the ADA.)

One other unfortunate thing in patients connecting the dots regarding ATN is that these surgeons don’t often use the term atypical trigeminal neuralgia when talking about the pain of osteonecrosis or cavitations, so I believe that’s why not many ATN pain patients in my support groups are making the connection between their dental procedures, their face pain and their potential blood clotting disorders.

I’ve had countless other complications with my ET, but to serve those who’ve come to this blog post looking for answers as to why they have ATN, I’m going to create a very short checklist of ideas to explore in the hopes that they can find relief. I have one dear friend who was completely cured of her ATN after multiple oral surgeries to get rid of the osteonecrosis, which is essentially small cavitations (holes) deep in the jawbone where the bone has died and needs to be cleaned out.

One thing that has made this procedure controversial is that these cavitations don’t easily show up on X-rays, but I was in attendance at one of my friend’s surgeries, and the surgeon brought me in to see the gaping hole in her jawbone, filled with a type of black fluid, after he had broken through the outer bone. I’m happy to say that Kelly has moved on to a completely pain-free life, but I haven’t been so lucky. Unlike me, Kelly didn’t have a blood clotting disorder, and in my case, it’s been somewhat firmly established that the ATN pain I suffer with now is scar tissue in the marrow, which was diagnosed and biopsied at my last surgery about seven years ago.

Curiously, in the last line of the pathology report from that surgery, the doctor questioned, “Does this patient have a hyper-coagulation disorder?” as the bone sample was so clotted. I’m still hoping that I’ll one day find a surgeon who will be able to resolve this scarring once and for all (unfortunately, scar tissue in the marrow is known to come back), but until then, allow me to create a checklist for ATN patients who would like to look into this line of inquiry.

1) Get the background. To get a basic understanding of osteonecrosis and cavitational surgery, this is an easy-to-understand and comprehensive description of both the condition and its treatment.

Unfortunately, Dr. Jerry Bouquot, who was a pioneer in this research, passed away a few years ago, and the extensive scientific site that detailed his work went with him. It was Dr. Bouquot who first made the connection between clotting disorders, facial pain and cavitations, and he took a lot of heat for it from sites like Quackwatch, but he never faltered. Countless facial pain patients are now pain-free because of his work, my friend being one of them. A lot of what you’ll read on Quackwatch about this condition and the people who treat it is actually quite old at this point, and it pains me that caring surgeons who take pain seriously in their patients have often come up against criticism, scrutiny and even, at times, lawsuits. But judge for yourself if any of this info resonates for you.

I saw three different surgeons between 2004 and 2013 (the first two retired), the last one being Dr. Robert Evans at Groton Wellness in Groton, MA. (I live in NJ, so I drove four hours to see him.) Here is his page about cavitation surgery:

2) Get your clotting factors checked. Even if you never go down the cavitation route, it would be a good idea to have your doctor do a blood panel on all of the clotting factors in your blood. It’s a simple blood draw, so there’s nothing to fear.

If you DO find that you have an undiagnosed clotting disorder, you might want to ask your doctor if you could do a trial run with the blood thinnner Coumadin. While I’m not pain-free, the intensity of my ATN pain eased up once I was put on this medication, which makes sense. If your blood is flowing the way it should through your face, any problems that are in your jawbone would seem to be improved if it were served by all the proper nutrients that your blood delivers.

In short, two things helped my ATN pain levels:

1) Three separate cavitation surgeries, which cut the pain in half, and;

2) The addition of the drug Coumadin, which lowered the intensity of the pain. Coumadin has served me well in other ways, as I had a major blood clot in 2002 in my liver, so I’m on it for life.

Without question, pursuing this theory of ATN might seem overwhelming as you'll likely come across info that does indeed sound a little nutty. But remember—you’re often reading the words of patients who are in extreme pain and who are willing to try anything to get relief. While it may be true that there are oral surgeons out there who’ve exploited ATN patients, my experiences with my three separate doctors was extraordinary, as each one cared so profoundly about this mysterious condition that caused their patients such agony. My friend Kelly saw three separate surgeons, as well, and had wonderful experiences with each.

Feel free to write to me if you have any questions as I’ll help the best I can, but most of the info I could give you is right here. If you do decide to consult with an oral surgeon who does cavitation surgery, you might have to travel a bit as there are probably just a few in each state. Good luck to all. I know just how awful the pain of ATN can be.

#facepain #atypicaltrigeminalneuralgia #atn #trigeminalneuralgia #cavitations #osteonecrosis

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 ©2020, Mary Ann Farley