Facial Pain experts establish a new pain classification.

The Facial Pain Association and its Medical Advisory Board under the guidance of Dr. Peter J. Jannetta have concluded that the term atypical facial pain be replaced with the term facial pain of obscure etiology.

Classification of Trigeminal Neuralgia and Other Facial Pain Problems

The senior author spent over five months wrestling with the quandary of how to classify our ignorance regarding facial pain as seen by neurologists and neurosurgeons. In his attempt to do this, he enlisted the help of the Medical Advisory Board of the TNA Facial Pain Association. Their input was thoughtful and usually profound and always helpful.

In days of yore, things we did not understand, both good and bad, were attributed to the workings of the gods in the trees, seas and mountains. This gradually settled onto one Supreme Being before being ascribed, parascientifically, to the psyche. The unknown became psychological and this has become pejorative in most minds.

On a personal note, as I was combing my way through the literature on the primary etiology of various cranial nerve problems and more recently brain stem vascular compression syndromes, I found that authors did one of two things when they were ignorant. The first (more common) was to expostulate long and hard, confusing etiology with mechanism. This was and is usually unintelligible. The true savant, on the other hand, recognized his ignorance and simply and briefly noted, “we do not know the primary etiology of such and such.”

Rather than rewriting the Burchiel classification, our consensus was that we should just admit our ignorance. A group of face problems exist without a known primary cause. As optimists, we believe these etiologies will be classified over time. For the present, we should discard the terms atypical and functional from our lexicon. Idiopathic, from the Greek, “it comes from within itself,” implies only that we are ignorant. So be it. We admit this. We need only a non-pejorative term to apply to this group of unclassified problems.

The term “atypical facial neuralgia or pain” was a wastebasket term applied by a serious contributor of a former era to a group of patients he did not understand. Many of these patients were our trigeminal neuralgia type 2 patients. It is unfortunate that many of these people were told they had psychological problems. Many developed psychological problems after the fact when told by everyone that such was their problem. Over the years, our areas of ignorance have progressively narrowed.

A non-pejorative and, hopefully, reasonable term for the ever-narrowing group of undiagnosed face pain problems: Facepain of Obscure Etiology (FOE or POE) to replace atypical facial pain in the Burchiel classification.

Peter J. Jannetta, MD

John F. Alksne, MD

Nicholas M. Barbaro, MD

Jeffrey A. Brown, MD

Kim J. Burchiel, MD

Kenneth F. Casey, MD

Steven B. Graff-Radford, DDS

Mark E. Linskey, MD

Donald R. Nixdorf, MD

Bruce E. Pollock, MD

David A. Sirois, DMD, PhD

Joanna M. Zakrzewska, MD

References

Burchiel, KJ: A New Classification for Facial Pain, Neurosurgery 53:1164-1167, 2003.

Miller JP, Feridun A, Burchiel KJ: Classification of trigeminal neuralgia: clinical, therapeutic, and prognostic implications in a series of 144 patients undergoing microvascular decompression. J Neurosurg 111:1231-1234, 2009.

Zakrzewska JM: Diagnosis and Differential Diagnosis of Trigeminal Neuralgia. The Clinical Journal of Pain 18:14021, 2002 Lippincott Williams & Wilkins, Inc., Philadelphia.

Obermann M, Yoon M-S, Ese D, Maschke M, Kaube H, Diener H-C, Katsarava Z: Impaired trigeminal nociceptive processing in patients with trigeminal neuralgia. Neurology 2007;69;835-841.

Comments Closed

16 Comment(s)

So glad that we are finally being recognized as "normal people" with something that may be difficult to treat and diagnose but truly exists and not just in our minds!!

susan | Oct 11, 2011 | Reply
Thanks Susan, your comment was well stated! There was a time when my own family, the people I trust and love the most, would look at me as if they thought my problem existed in my mind.

Gale | Oct 19, 2011 | Reply
I have two Gamma knife surgerys first in Sept in 2007, second in June 2008 which has relieved the big pains. However in the last 16 months my face has gradually become very numb. My question is how numb can it get and where is there information to guide me along?

Richard | Oct 20, 2011 | Reply
For Richard…..Was your face numb immediately after the surgery? I am a fellow sufferer, and have chosen NOT to do the
GK surgery, as my neurologist told me that these surgeries will leav e you face permanently numb. Please le4t me know your experiencde on this. Good Luck to you with the problem as well.

Diana | Nov 2, 2011 | Reply
R C Murthy -To suppelement Richard and Diana — MVD right side was done for me June 2006. Big pain is gone. I was forewarned about face numbness. A day after procedure, numbness was at right ganglia and at the end of V2 nervelet under the chin. It gradually spread. Now, it's numb along right side of nose and under chin right side. Also, a little nunbness along V3, especially far below the ear, around the right jaw. The numbness fluctuaters, depending on the overnight sleep and the resultant mood in the morning. __Somehow, I'm confident of managing the numbness. I've a rigorous schedule as a journalist and writer and numbness has not come in the way so far. I'll start a blog, where I would discuss how I'm combating so that all TN sufferers can benefit. Will be in toouch.

R C MURTHY | Nov 12, 2011 | Reply
Wow, what a wonderful surprise to see that some dr.'s have braved to go outside of the norm and just leave patients feeling misdiagnosed and misunderstood. It goes to show you that what a Dr. states about you determines how insurance companies look at you and even in many cases close family and friends. Hopefully this will begin a wave of proper diagnosis and care for patients who suffer with facial pain. I have suffered with facial pain for 10 years now. Was originally diagnosed with AFP but after almost a year later an orofacial pain specialist determined the cause of my pain was due to displaced articular displacement of my left jaw joint. This caused myofascial pain, tmjd, & arthralgia. The bottom line though is after receiving treatment from him for a year I wasn't any better. I went back to work for a few years with much pain and stressed out my nervous system so much that I ended up getting Reflex Sympathetic Dystrophy in my right arm and both legs and now appears to be spreading to my stomach and groin area. I have been at home disabled since 2006. All this chronic pain took it's toll on my family as my wife took our kids and left me a year ago. It's amazing how things can snowball if misdiagnosed early on and proper treatment is not given. I am thrilled to see a new name given for diagnosing facial pain. I certainly empathize for anyone who continue to suffer without finding effective treatment. My world has been turned upside down because of chronic pain.

W J Oord | Nov 13, 2011 | Reply
have had tn for about ten years 2mvds one in 2008 and one in 2010 Im still in pain trying to make a right decision..
In the back of my mind Ive always wonderedabout these two bottom molars with very deep fillings an the painmost always seems to generat from there..The dents.what do I have to lose by having then extracted???

The dents all tell me the teeth are fine mercury and all..

i have 2 teethI

June | Nov 17, 2011 | Reply
I've had cyber knife, decompression surgery, and I'm thinking about another cyber knife. I can't remember anything and my balance is off because of all the meds I'm on. It's a miserable life. I pray for healing for me and everyone els.

Mar | Nov 18, 2011 | Reply
My heart goes out to you. I've have had many dental procedures I didn't need. I made my dentist do them.

Mar | Nov 18, 2011 | Reply
My MVD, done by Jannetta, was after a rhizolysis that numbed all of the left side of my face. (My TN and Atypical Tn in left V1, V2.) The MVD resulted in a 100% facial paralysis of the left sideof my face which has resolved to some degree (my forehead is still about 90% paralyzed , the mouth is maybe 50% at this point but my eye has trouble closing and has had to be sewn chut surgically a number of times (was supposed to be permanent but I have refused.)
You might be interested in my book , A PAINED LIFE, a chronic pain journey. You can read first chapter excerpt here: http://www2.xlibris.com/bookstore/book_excerpt.as…
(I also maintain a blog about my pain and life (and chronic pain issues in general).

carol | Nov 18, 2011 | Reply
Amen!! I have had this for about 10 years and have had MVD in 2008 and Gamma knife surgery in 2009, neither of these procedures helped. I am taking so many pills I am having a hard time getting through every day life. I work 44 hours a week and tried to get medical disability but got denied because I work..the SSI office told me to stop working and I should get approved in a 1 to 5 years, I asked how am I supposed to pay for medical and my mortgage if I'm not working, she didn't seem to think that trigemial neuralgia was such a big deal, she told me that SSI is for people that have a disability like blindness…I told her that I am in so much pain everyday of my life and no one should have to live like this, I told her that this is a medical disability due to the chronic pain….it just sucks, I don't know how much longer I can go on, a couple of weeks ago my right side of my face started hurting and spasming just like left side, I asked my doctor is it possible to get trigemial on both sides of my face?? It looks like both sides of my face are all jacked up!!! Sorry to go on and on, I guess I just had to get it off my mind. Take care Susan, it's not in your kind it really does exist.

Beemarie | Nov 19, 2011 | Reply
I was seized of the above three posts. It two MVDs were done in a span of two yeafrs, one needed to find out why the artery is form loops so frequently. Change in lifestyle would help? Was the mind occupied always by negative thoughts? Positive thinking should be our way of life, I think. How can one think positively with TN/facial pain nagging? It's a chicken-and-egg situation. So one should look for a breather to consciously orient ourselves and reduce the negative thoughts, whose effects are transmitted from mind to body. And, this would slow loop formation? – R C MURTHY

R C MURTHY | Nov 20, 2011 | Reply
My mom (age 65) and both her sisters have TNA. My mom was told that the pain will become more intense and more frequent as she gets older. Has everyone had this experience? Does the pain become more intense and more frequent as one gets older?

Regina | Nov 28, 2011 | Reply
hi june as for my exsprerience when i went to the dentist with the pain they kept saying it wasnt my molars the neurologist kept saying it was then they started giving me novacaine injections in my face which was painfl and helped for about an hour and then i had to go back to find out after 2 weeks of injections i was in the er screaming and admitted to find out i had parry romberg syndrome so if i were u get a second opinion take care hope u feel better

tanya | Nov 29, 2011 | Reply
so sorry for whats going on in your personal life and medically. not nice for your wife to walk out on u when times got rough its through sickness and health. as for the doctors its said how they diagnose patients just to give them an answer when someone goes to them with severe pain they tell them anything when they themselves arent sure. it took me a longtime to finally get some what pain under control and now my doctor has left no one wants to take my case now im without a doctor and so scared whats gonna happen i pray you will be ok hang in there

tanya | Nov 29, 2011 | Reply
I have also gone thru the MVD although I did experience relief with no major numbness for 8 months, but later it was back. I the had the gamma knife and lost feeling from my ear to the bottom of my left eye socket down to my left lips,cheek and left side of my tongue. Still have pins and needle feelings. Not tasting sucks. It's very hard to eat on my left side, and around my eye is always a problem. The TNA is now affecting from my eye and above it. Wind & air are still my triggers.

Bob Detrick | Nov 29, 2011 | Reply

Sorry, comments for this entry are closed at this time.

So glad that we are finally being recognized as "normal people" with something that may be difficult to treat and diagnose but truly exists and not just in our minds!!

susan | Oct 11, 2011 | Reply

Thanks Susan, your comment was well stated! There was a time when my own family, the people I trust and love the most, would look at me as if they thought my problem existed in my mind.

Gale | Oct 19, 2011 | Reply

I have two Gamma knife surgerys first in Sept in 2007, second in June 2008 which has relieved the big pains. However in the last 16 months my face has gradually become very numb. My question is how numb can it get and where is there information to guide me along?

Richard | Oct 20, 2011 | Reply

For Richard…..Was your face numb immediately after the surgery? I am a fellow sufferer, and have chosen NOT to do the
GK surgery, as my neurologist told me that these surgeries will leav e you face permanently numb. Please le4t me know your experiencde on this. Good Luck to you with the problem as well.

Diana | Nov 2, 2011 | Reply

R C Murthy -To suppelement Richard and Diana — MVD right side was done for me June 2006. Big pain is gone. I was forewarned about face numbness. A day after procedure, numbness was at right ganglia and at the end of V2 nervelet under the chin. It gradually spread. Now, it's numb along right side of nose and under chin right side. Also, a little nunbness along V3, especially far below the ear, around the right jaw. The numbness fluctuaters, depending on the overnight sleep and the resultant mood in the morning. __Somehow, I'm confident of managing the numbness. I've a rigorous schedule as a journalist and writer and numbness has not come in the way so far. I'll start a blog, where I would discuss how I'm combating so that all TN sufferers can benefit. Will be in toouch.

R C MURTHY | Nov 12, 2011 | Reply

Wow, what a wonderful surprise to see that some dr.'s have braved to go outside of the norm and just leave patients feeling misdiagnosed and misunderstood. It goes to show you that what a Dr. states about you determines how insurance companies look at you and even in many cases close family and friends. Hopefully this will begin a wave of proper diagnosis and care for patients who suffer with facial pain. I have suffered with facial pain for 10 years now. Was originally diagnosed with AFP but after almost a year later an orofacial pain specialist determined the cause of my pain was due to displaced articular displacement of my left jaw joint. This caused myofascial pain, tmjd, & arthralgia. The bottom line though is after receiving treatment from him for a year I wasn't any better. I went back to work for a few years with much pain and stressed out my nervous system so much that I ended up getting Reflex Sympathetic Dystrophy in my right arm and both legs and now appears to be spreading to my stomach and groin area. I have been at home disabled since 2006. All this chronic pain took it's toll on my family as my wife took our kids and left me a year ago. It's amazing how things can snowball if misdiagnosed early on and proper treatment is not given. I am thrilled to see a new name given for diagnosing facial pain. I certainly empathize for anyone who continue to suffer without finding effective treatment. My world has been turned upside down because of chronic pain.

W J Oord | Nov 13, 2011 | Reply

have had tn for about ten years 2mvds one in 2008 and one in 2010 Im still in pain trying to make a right decision..
In the back of my mind Ive always wonderedabout these two bottom molars with very deep fillings an the painmost always seems to generat from there..The dents.what do I have to lose by having then extracted???

The dents all tell me the teeth are fine mercury and all..

i have 2 teethI

June | Nov 17, 2011 | Reply

I've had cyber knife, decompression surgery, and I'm thinking about another cyber knife. I can't remember anything and my balance is off because of all the meds I'm on. It's a miserable life. I pray for healing for me and everyone els.

Mar | Nov 18, 2011 | Reply

My heart goes out to you. I've have had many dental procedures I didn't need. I made my dentist do them.

My MVD, done by Jannetta, was after a rhizolysis that numbed all of the left side of my face. (My TN and Atypical Tn in left V1, V2.) The MVD resulted in a 100% facial paralysis of the left sideof my face which has resolved to some degree (my forehead is still about 90% paralyzed , the mouth is maybe 50% at this point but my eye has trouble closing and has had to be sewn chut surgically a number of times (was supposed to be permanent but I have refused.)
You might be interested in my book , A PAINED LIFE, a chronic pain journey. You can read first chapter excerpt here: http://www2.xlibris.com/bookstore/book_excerpt.as…
(I also maintain a blog about my pain and life (and chronic pain issues in general).

carol | Nov 18, 2011 | Reply

Amen!! I have had this for about 10 years and have had MVD in 2008 and Gamma knife surgery in 2009, neither of these procedures helped. I am taking so many pills I am having a hard time getting through every day life. I work 44 hours a week and tried to get medical disability but got denied because I work..the SSI office told me to stop working and I should get approved in a 1 to 5 years, I asked how am I supposed to pay for medical and my mortgage if I'm not working, she didn't seem to think that trigemial neuralgia was such a big deal, she told me that SSI is for people that have a disability like blindness…I told her that I am in so much pain everyday of my life and no one should have to live like this, I told her that this is a medical disability due to the chronic pain….it just sucks, I don't know how much longer I can go on, a couple of weeks ago my right side of my face started hurting and spasming just like left side, I asked my doctor is it possible to get trigemial on both sides of my face?? It looks like both sides of my face are all jacked up!!! Sorry to go on and on, I guess I just had to get it off my mind. Take care Susan, it's not in your kind it really does exist.

Beemarie | Nov 19, 2011 | Reply

I was seized of the above three posts. It two MVDs were done in a span of two yeafrs, one needed to find out why the artery is form loops so frequently. Change in lifestyle would help? Was the mind occupied always by negative thoughts? Positive thinking should be our way of life, I think. How can one think positively with TN/facial pain nagging? It's a chicken-and-egg situation. So one should look for a breather to consciously orient ourselves and reduce the negative thoughts, whose effects are transmitted from mind to body. And, this would slow loop formation? – R C MURTHY

R C MURTHY | Nov 20, 2011 | Reply

My mom (age 65) and both her sisters have TNA. My mom was told that the pain will become more intense and more frequent as she gets older. Has everyone had this experience? Does the pain become more intense and more frequent as one gets older?

Regina | Nov 28, 2011 | Reply

hi june as for my exsprerience when i went to the dentist with the pain they kept saying it wasnt my molars the neurologist kept saying it was then they started giving me novacaine injections in my face which was painfl and helped for about an hour and then i had to go back to find out after 2 weeks of injections i was in the er screaming and admitted to find out i had parry romberg syndrome so if i were u get a second opinion take care hope u feel better

tanya | Nov 29, 2011 | Reply

so sorry for whats going on in your personal life and medically. not nice for your wife to walk out on u when times got rough its through sickness and health. as for the doctors its said how they diagnose patients just to give them an answer when someone goes to them with severe pain they tell them anything when they themselves arent sure. it took me a longtime to finally get some what pain under control and now my doctor has left no one wants to take my case now im without a doctor and so scared whats gonna happen i pray you will be ok hang in there

I have also gone thru the MVD although I did experience relief with no major numbness for 8 months, but later it was back. I the had the gamma knife and lost feeling from my ear to the bottom of my left eye socket down to my left lips,cheek and left side of my tongue. Still have pins and needle feelings. Not tasting sucks. It's very hard to eat on my left side, and around my eye is always a problem. The TNA is now affecting from my eye and above it. Wind & air are still my triggers.

Bob Detrick | Nov 29, 2011 | Reply