Questions for school paper

I have had TN for four years, I tried medication (no relief), saw two neurologist who told me I didn’t have it, and then found Dr. Kim Burchiel at Oregon Health Sciences University who confirmed. I was so excited to get the confirmation and to know that I wasn’t crazy. I had MVD in December of 07, had a neurostimulator implanted in 09, still have pain issues.

I am writing a term paper and I have chosen to write about TN. I am writing on misdiagnosis both on dental and medical side, lack of information for the person who suffers from TN, and what Joe public can do to support the cause.

I am hoping that you could offer insight on their misdiagnosis, was it a doctor or a dentist? What was or was not out there to help you with self education? What would you like to see for self education? Also how could Joe public, or your employers do to learn about TN and its effect on you. I hope these questions make sense and I look forward to hearing from you.

Hi Danna,

I had peripheral neuropathy on the bottom of my feet (I don't have diabetes) for about 6 years and it felt like I was walking on hot coals and broken glass. When the Atypical TN pain started (after a tooth extraction) I asked my doctor if there was such a thing as "neuropathy of the face"? That's when I first heard the words Trigeminal Neuralgia.

However, my doctor then did diagnostic tests and asked me questions geared specifically for Type I, not Atypical. I looked up TN on Wikipedia and found that I had classic Atypical symptoms. The problem was my doctor had never heard of Atypical TN and kept insisting that since I didn't fit the Type I symptoms that I didn't have TN. I kept insisting that I did. I felt so frustrated that he wouldn't acknowledge what I already knew.

Finally, I was refered to a neurologist who (thankfully) diagnosed me with Atypical TN. However, my struggle to make my primary care doctor understand wasn't over. He insisted on diagnosing me with migraines and I kept telling him it wasn't a headache, but was having severe constant, searing, crushing, burning, aching, thobbing pain in my face - not my head. Additionally, I thought how on earth can my primary care be so sure of anything since before I brought up the subject, he had never even heard of Atypical TN???

Then there was the issue of semantics...one neurologist diagnosed me with Atypical Trigeminal Neuralgia and the neurosurgeon called it Atypical Facial Pain. I had been told during a week in the hospital that an MRI had shown there was blood vessel compression on my trigeminal nerve. So in my opinion that clinched the diagnosis of Atypical TN not Atypical Facial Pain. I still haven't been explained by a medical professional what is the difference between the two??? Is Atypical Facial Pain a generic term?

As far as educating Joe Public is concerned, I think we need to push for education in the medical community first, which is urgently needed.

Gloria,

Thanks so much for sharing, here’s a link a Trigeminal Neuralgia - Diagnostic Questionnaire https://neurosurgery.ohsu.edu/tgn.php that I filled out before I saw Dr. Burchiel. I'm not sure where you are located, but check out a surgery called Microvascular Decompression. I had that and I am glad that I did. I still have some pain but I am an anomaly.

Danna

Gloria E. said:

Hi Danna,

I had peripheral neuropathy on the bottom of my feet (I don't have diabetes) for about 6 years and it felt like I was walking on hot coals and broken glass. When the Atypical TN pain started (after a tooth extraction) I asked my doctor if there was such a thing as "neuropathy of the face"? That's when I first heard the words Trigeminal Neuralgia.

However, my doctor then did diagnostic tests and asked me questions geared specifically for Type I, not Atypical. I looked up TN on Wikipedia and found that I had classic Atypical symptoms. The problem was my doctor had never heard of Atypical TN and kept insisting that since I didn't fit the Type I symptoms that I didn't have TN. I kept insisting that I did. I felt so frustrated that he wouldn't acknowledge what I already knew.

Finally, I was refered to a neurologist who (thankfully) diagnosed me with Atypical TN. However, my struggle to make my primary care doctor understand wasn't over. He insisted on diagnosing me with migraines and I kept telling him it wasn't a headache, but was having severe constant, searing, crushing, burning, aching, thobbing pain in my face - not my head. Additionally, I thought how on earth can my primary care be so sure of anything since before I brought up the subject, he had never even heard of Atypical TN???

Then there was the issue of semantics...one neurologist diagnosed me with Atypical Trigeminal Neuralgia and the neurosurgeon called it Atypical Facial Pain. I had been told during a week in the hospital that an MRI had shown there was blood vessel compression on my trigeminal nerve. So in my opinion that clinched the diagnosis of Atypical TN not Atypical Facial Pain. I still haven't been explained by a medical professional what is the difference between the two??? Is Atypical Facial Pain a generic term?

As far as educating Joe Public is concerned, I think we need to push for education in the medical community first, which is urgently needed.

Danna,

I designed the Trigeminal Neuralgia Association's global patient survey in the late 1990s. I also participated in entering survey forms in a machine-implemented database. You may quote me by name as a reference in your school paper on this: the existing data in the TNA national patient survey suggests that the average facial pain patient will see an average of six physicians before finding someone who recognizes and diagnoses trigeminal neuralgia. The first practitioner seen will most often be a dentist who has had less than eight hours of total training in dental school, with regard to the assessment and recognition of facial neuralgia and neuropathy.

Dentists frequently suffer from what might be called "the dental hammer syndrome: When the only tool you have is a hammer, then every problem tends to look like a nail." Dentists quite frequently misdiagnose facial neuropathic pain as tempro-mandibular joint disorder, or dental abscess -- and often do so in spite of the absence of any radiographic evidence for these disorders. In the 16 years I have been talking with facial pain patients as an on-line researcher and patient advocate, I have lost count of the number of people who have told me that their dentists or dental surgeons have put them through multiple root canals or tooth extractions in their efforts to trace and treat pain that seemed to "jump" from one tooth to another following previous surgical procedures.

Likewise, there is suggestive evidence that some cases of facial pain originate as neuropathy (nerve damage) attendant to dental procedure. There is a small and highly controversial group of dentists who propose that some cases of facial neuropathy develop due to infection introduced by root canals, in the fine bone cavities which surround the mandibular distribution of the trigeminal nerve. The medical entity proposed as a diagnosis for such infections is "Neuralgia Inducing Cavitational Osteonecrosis" or "NICO", and the treatment entails surgical opening of these cavities and direct administration of antibiotics.

Mainstream dentistry has actively pursued and persecuted dental" rebels" who insist that this entity is valid. At the same time, thousands of mainstream dentists have engaged in various "procedures" for the adjustment of bite or of TMJ position and structure, which have not been demonstrated by double blind testing to be effective.

Many general medical practitioners are also only sketchily trained in the recognition and differential diagnosis of facial neuropathic conditions. For both dentists and doctors, some form of significant revision in medical school curricula seems highly warranted. A likewise pressing need is significant reallocation of NIH research grant funds to address innovative therapies and CURE for chronic neuropathic pain of all kinds. Finally, a revision of medical insurance reimbursement codes and billing practices is very much needed, to remove the existing financial disincentives which lead doctors to dismiss pain patients as "head cases", rather than spending the time needed to do careful workups and active case management for people in pain.

Dana, please feel free to visit my personal website "Giving Something Back" (http://www.lawhern.org), as well as the website of the Facial Pain Association (http://tna-support.org). In the interests of fair disclosure, be aware that I was once webmaster at TNA, and responsible for a major expansion of their information archives in the late 1990s. You may also send me email via my web gateway at ■■■■■■■■■■■■■■■■■■■. If you have the time and interest, we can talk by phone as a follow up to this thread.

Go in Peace and Power

R.A. Red Lawhern, Ph.D.

Thank you so much for your insight and comments. I appreciate being able to quote you. I lived in a small town in Oregon in 2007, when diagonised with TN. I ws lucky to be diagonised correctly at the inital doctors visit. Where I had problem was the follow up treatment, medication did not help, bad side effects, the two neurologist
who told me I didn't have TN because I wasn't a older woman. Thank goodnes, though TNA and the web I found Dr. Kim Burchiel, his practice was only a 45 minute drive.

I think that we, the suffers educate our GP's and dentist. I am not sure if there is any support groups in Oregon, it would be great to have one. I realize that my paper will only be read by my instructor and a few others, but I'll post it online and send to my dentist and doctor so they can be aware.

Danna
Richard A. "Red" Lawhern said:

Danna,

I designed the Trigeminal Neuralgia Association's global patient survey in the late 1990s. I also participated in entering survey forms in a machine-implemented database. You may quote me by name as a reference in your school paper on this: the existing data in the TNA national patient survey suggests that the average facial pain patient will see an average of six physicians before finding someone who recognizes and diagnoses trigeminal neuralgia. The first practitioner seen will most often be a dentist who has had less than eight hours of total training in dental school, with regard to the assessment and recognition of facial neuralgia and neuropathy.

Dentists frequently suffer from what might be called "the dental hammer syndrome: When the only tool you have is a hammer, then every problem tends to look like a nail." Dentists quite frequently misdiagnose facial neuropathic pain as tempro-mandibular joint disorder, or dental abscess -- and often do so in spite of the absence of any radiographic evidence for these disorders. In the 16 years I have been talking with facial pain patients as an on-line researcher and patient advocate, I have lost count of the number of people who have told me that their dentists or dental surgeons have put them through multiple root canals or tooth extractions in their efforts to trace and treat pain that seemed to "jump" from one tooth to another following previous surgical procedures.

Likewise, there is suggestive evidence that some cases of facial pain originate as neuropathy (nerve damage) attendant to dental procedure. There is a small and highly controversial group of dentists who propose that some cases of facial neuropathy develop due to infection introduced by root canals, in the fine bone cavities which surround the mandibular distribution of the trigeminal nerve. The medical entity proposed as a diagnosis for such infections is "Neuralgia Inducing Cavitational Osteonecrosis" or "NICO", and the treatment entails surgical opening of these cavities and direct administration of antibiotics.

Mainstream dentistry has actively pursued and persecuted dental" rebels" who insist that this entity is valid. At the same time, thousands of mainstream dentists have engaged in various "procedures" for the adjustment of bite or of TMJ position and structure, which have not been demonstrated by double blind testing to be effective.

Many general medical practitioners are also only sketchily trained in the recognition and differential diagnosis of facial neuropathic conditions. For both dentists and doctors, some form of significant revision in medical school curricula seems highly warranted. A likewise pressing need is significant reallocation of NIH research grant funds to address innovative therapies and CURE for chronic neuropathic pain of all kinds. Finally, a revision of medical insurance reimbursement codes and billing practices is very much needed, to remove the existing financial disincentives which lead doctors to dismiss pain patients as "head cases", rather than spending the time needed to do careful workups and active case management for people in pain.

Dana, please feel free to visit my personal website "Giving Something Back" (http://www.lawhern.org), as well as the website of the Facial Pain Association (http://tna-support.org). In the interests of fair disclosure, be aware that I was once webmaster at TNA, and responsible for a major expansion of their information archives in the late 1990s. You may also send me email via my web gateway at ■■■■■■■■■■■■■■■■■■■. If you have the time and interest, we can talk by phone as a follow up to this thread.

Go in Peace and Power

R.A. Red Lawhern, Ph.D.

Danna,

I took that questionnaire a long time ago. I've already had two MVD surgical evaluations by the heads of neurosurgery at two of the top teaching hospitals in the country. In both cases I was told I am not a candidate for MVD because I am Atypical. They advised me that the latest research in the field ((( and I know Red will back me up on this and explain it so much better than I can ))) is that MVD is not recommended for Atypical patients because:

- it can do nothing

- it can help for a short period of time

- it can make the pain worse

While MVD can be very successful with Type I patients, I'm alarmed at how many Atypical patients have gone through MVD with negative results. I don't think you are an anomaly. I think there's a very large group of Atypical patients out there who have had MVD and are still in pain. Also there are many who have had surgical complications, Cerebral Spinal Fluid Leaks, and other life threatening issues due to a surgical procedure they should not have had.

Another issue that greatly concerns me is that some neurosurgeons are not up to date on the latest information that MVD isn't recommended for Atypical patients. Some are more concerned about gaining surgical experience than than the good of the patient. Some are on retainer with MVD surgical equipment manufacturers and that clouds their ability to make a reasonable determination on whether MVD should be done.

I'm very concerned about getting the word out to all our Atypical members that they need to do more research and be their own advocate before agreeing to having MVD. So many of our members are grasping at straws because they've been told (and in some cases even guaranteed - which is impossible) by their neurosurgeons that MVD would help their pain.

This is why I am more concerned about educating doctors, neurosurgeons and current Atypical patients than I am Joe Public.

Danna Jacober said:

Gloria,

Thanks so much for sharing, here’s a link a Trigeminal Neuralgia - Diagnostic Questionnaire https://neurosurgery.ohsu.edu/tgn.php that I filled out before I saw Dr. Burchiel. I'm not sure where you are located, but check out a surgery called Microvascular Decompression. I had that and I am glad that I did. I still have some pain but I am an anomaly.

Danna

Danna, if you'd like to talk with some folks in an Oregon support group, the following contacts are listed by the Facial Pain Association.

Regards and best, Red

OREGON
Support Group Telephone Support


Enterprise

Molly Murrill *

(541) ■■■■■■■■

■■■■■■■■■■■■■■■




Pacific NW

Ruth Purchase

(503) ■■■■■■■■

■■■■■■■■■■■■■■■■■■■■■■■■




Portland

Brenda Dengo

(503) ■■■■■■■■

I have had TN for just over four years, I tried medication (Carbatrol), with adverse reaction, and so my story begins.

I had an MVD (failed, two weeks to the day) autumn 2007, and (2) SRS, 1st (failed, two weeks to the day), 2ND (failed, got me disabled, though, it did diminished pain sporadically, with +++medication).

I have experienced a plethora of caring healthcare professionals, of whom many, I refer to as my "new, best specialist friends".

I wasn't misdiagnosed, I was diagnosed. My treatmentssss;) for TN assure me, that much of medicine is truly a practice. 'Bob Public' would appreciate the opportunity to put a twist upon your paper, advocating a little R&D.

Hope is on the horizon, Danna, with people such as yourself, getting the word out. Very Nice, Thank you! bob

Thanks Bob, I'll add that to my list. Appreciate you sharing.

Take care,

Danna

Bob Snodgrass said:

I have had TN for just over four years, I tried medication (Carbatrol), with adverse reaction, and so my story begins.

I had an MVD (failed, two weeks to the day) autumn 2007, and (2) SRS, 1st (failed, two weeks to the day), 2ND (failed, got me disabled, though, it did diminished pain sporadically, with +++medication).

I have experienced a plethora of caring healthcare professionals, of whom many, I refer to as my "new, best specialist friends".

I wasn't misdiagnosed, I was diagnosed. My treatmentssss;) for TN assure me, that much of medicine is truly a practice. 'Bob Public' would appreciate the opportunity to put a twist upon your paper, advocating a little R&D.

Hope is on the horizon, Danna, with people such as yourself, getting the word out. Very Nice, Thank you! bob

Hello, Danna.

I think you are should now be well armed to write a very good paper! In my humble opinion, you have heard from some of the very most "seasoned of the informed individuals" whom I have had the pleasure of speaking with here, in this community. Anything I can say here, I realize, will sound simple in comparison the the wealth of good information that you've been provided. I see so much above that is right on the money, that I must back it up.

I have been devouring information regarding TN, especially Atypical TN, for some time now in hopes of finding answers.

In another "Discussion", I expressed that I was "impressed" that you had found a doctor who arrived at the diagnosis of Atypical Trigeminal Neuralgia. We are a group of people who are typically misunderstood by healthcare professionals.

I am not dismissing that anything may be possible. However, I will have to concur with Gloria's opinion regarding MVD and the ATN patient. I have spoken with a number of ATN patients who have undergone this procedure. What you will find missing are "success" stories of ATN patients who have undergone MVD. I have not heard one. If anyone else has, feel free to jump in this forum and tell us, please!

Although your Neurosurgeon may have correctly diagnosed your condition, indicating MVD for an ATN patient, in my opinion, shows a lack of saavy to the differences between Type I and Type II Trigeminal Neuralgia.

As well, I give a wholehearted agreement to Red's statement:

" Many general medical practitioners are also only sketchily trained in the recognition and differential diagnosis of facial neuropathic conditions. For both dentists and doctors, some form of significant revision in medical school curricula seems highly warranted."

I have 8 yrs. of first hand experience that, I do believe would, validate the above.

I dare to speak among a lot of heavy hitters here with a wealth of knowledge on the our condition. I must say, though, that, if I were writing a paper about Trigeminal Neuralgia, I would speak of the hope and surgical options that do exist for classic TN vs. the confusion and controversy concerning the treatment of those of us with Atypical Trigeminal Neuralgia. Oftentimes, as Bob represents, through guiding us through his journey, you see that some undergo a series of unsuccessful procedures, which can leave one with more problems that TN or ATN itself.

At first, when I was deemed inoperable, and referred to a "Facial Pain Specialist", whom I am looking forward to seeing now. I was upset at first, as my Neurologist, I felt, had told me, essentially, that there was no hope. I had so hoped for a referral for Microvascular Decompression. However, after all, I have studied the outcome of surgery for ATN, I am thankful that right now, until more research is done on the subject, that, even though my naive Neuro did diagnose me as having "Atypical Facial Pain" (which, I feel is a wastebasket diagnosis), she must have known more about "Atypicals" than I did at the time, as did Gloria, when we first spoke. I did not want to believe her either (laughs)!!!

Other misdiagnoses I have in my history include "TMJ", by a GP and two dentists (an MRI proved this wrong) and "Trigeminal Neuralgia", by a Pain Management doctor who knows little about facial pain, who admitted that I had "atypical aspects" to my pain.

At long last, I was given a correct diagnosis by the physician at my current Pain Management Clinic. "Atypical Trigeminal Neuralgia" is my current diagnosis. But, even upon the visit which finally yielded this diagnosis, books were taken out and studied by the Nurse Practitioner. Thankfully, the doctor knew just from the account of my symptoms, what had worked, and what had not worked for me, what category I fell into! When I read any definition of my condition, I align with what is absolutely textbook ATN!

My count of physicians now, before diagnosis, and the most effective treatment I have ever received is 7 healthcare professionals. Two GP's, two dentists, two Pain Management Physicians, and a Neurologist have all been, what I know now must be, incorrect. Their treatment plans for me were, to a large degree, ineffective.

With a proper diagnosis, I am receiving more adequate treatment. I am feeling so much better than I did previously. I am concerned with other things besides barely making it to the next pain pill. Previously, I was in pain that left me side-lined from raising my two children. I certainly would not have been capable of working, or going to school, both of which I am now considering . . . .all because someone finally got it right.

I am a case history which backs up Red's description of the journey a TN patient.

I am still hopeful that research will be funded and provided for the treatment of "Atypicals", like me. As of now, I am happy to be managed fairly successfully.

Good luck with your paper, Danna! Congrats on being a student too. I hope this for myself, possibly, soon! (my former career of over a decade is now void of job opportunity)

Thanks to my current medication regimen being mostly effective, I feel as if I could return to work, or school. I am waiting a little while to see if it is true, because I still have occasional flair-ups, but I feel better than I have in years, right now. I pray that this lasts! This is all thanks to correct diagnosis and treatment, after 8 yrs. of being misunderstood by the healthcare profession.

I look forward to reading the finished product when your paper is complete!

All of my best wishes for informed, compassionate and effective care!!

Your friend,

Stef

What a great topic and interesting angle. I also look forward to the finished product.

It is very interesting what Dr. Red said in regard to how little Dentists receive in formal training on face pain, etc. When I first told my Dentist I had TN he didn't even blink an eye. He gave me a look that made me feel reassured that the dental work he was about to do wouldn't interfere at all. I didn't know any better and I assumed he would know.

I do not have 3rd branch problems, but what if I did? I can't imagine. As it turns out it was a horrific experience. It felt like the freezing was "coming out" for about 3 straight days.

Do I think my Dentist did not receive enough training? You bet. Could my Dentist having more knowledge help me? I would certainly think so.

Thanks everyone for all the input, rough draft is going to peer review, I will blend in more information that has been provided. Will post after I get it back in two weeks or so.

I'll look forward to reading the paper. If you'd like to post it in a wider public venue, I may be able to give you some exposure by posting it to my personal website.

Regards and best,

Red

Gloria, according to the National Pain Foundation, the difference between Atypical TN and Atypical FP is that ATypical Facial Pain is considered a "psychological" problem and ATN is considered a "physiological" problem. So if they know it is a blood vessel on the nerve, it is definitely ATN.

Barb

Gloria E. said:

Hi Danna,

I had peripheral neuropathy on the bottom of my feet (I don't have diabetes) for about 6 years and it felt like I was walking on hot coals and broken glass. When the Atypical TN pain started (after a tooth extraction) I asked my doctor if there was such a thing as "neuropathy of the face"? That's when I first heard the words Trigeminal Neuralgia.

However, my doctor then did diagnostic tests and asked me questions geared specifically for Type I, not Atypical. I looked up TN on Wikipedia and found that I had classic Atypical symptoms. The problem was my doctor had never heard of Atypical TN and kept insisting that since I didn't fit the Type I symptoms that I didn't have TN. I kept insisting that I did. I felt so frustrated that he wouldn't acknowledge what I already knew.

Finally, I was refered to a neurologist who (thankfully) diagnosed me with Atypical TN. However, my struggle to make my primary care doctor understand wasn't over. He insisted on diagnosing me with migraines and I kept telling him it wasn't a headache, but was having severe constant, searing, crushing, burning, aching, thobbing pain in my face - not my head. Additionally, I thought how on earth can my primary care be so sure of anything since before I brought up the subject, he had never even heard of Atypical TN???

Then there was the issue of semantics...one neurologist diagnosed me with Atypical Trigeminal Neuralgia and the neurosurgeon called it Atypical Facial Pain. I had been told during a week in the hospital that an MRI had shown there was blood vessel compression on my trigeminal nerve. So in my opinion that clinched the diagnosis of Atypical TN not Atypical Facial Pain. I still haven't been explained by a medical professional what is the difference between the two??? Is Atypical Facial Pain a generic term?

As far as educating Joe Public is concerned, I think we need to push for education in the medical community first, which is urgently needed.

I have to say that my diagnosis was quick. I was fortunate that when I saw my family doctor about my face pain, he knew my concerns. My mom had Temporal Arteritis-an autoimmune disease that attacks the temporal artery and causes great pain in the temple and eye. I have had the same type of autoimmune disease, but it attacked the arteries in my legs. It is not uncommon to develop secondary autoimmune disease.

Fortunately, he had a neurology resident visiting that day in the office and asked if they could look at me, too. Yes! I had jaw pain as well and neuropathy from my cheek to my jaw. They felt it was either shingles-which I have had several times, and if I broke out, we would have our answer, or, TMJ, or TN. I had my scheduled dentist appointment a couple of weeks later and he said it was not TMJ. And I had no break out from shingles. That left TN.

Thanks Barb!

The official National Pain Foundation's definition only adds to confusion. Since, as Red says, there are a great number of cases where the MRI didn't show compression, but when the neurosurgeon went in, there was compression. Which then makes me quote Stef, in saying, that the diagnosis of Atypical Facial Pain is a "wastebasket diagnosis" and has no real basis in reality.

Fortunately, in my case, compression was found on the MRI, but now I have the greatest sympathy for anyone with a diagnosis of Atypical Facial Pain and the diagnosis can't really be made unless there is surgical intervention to confirm the lack of compression. Wow!!!

Another thought that comes to mind...The National Pain Foundation claims to know the difference, but do the doctors and dentists know the difference? Then is the difference the same in the medical community??? Since there is such a lack of education for dentist and unfortunately, some doctors, I would have to say that the difference is simply a roll of the dice.

Barbara Russell Kelly said:

Gloria, according to the National Pain Foundation, the difference between Atypical TN and Atypical FP is that ATypical Facial Pain is considered a "psychological" problem and ATN is considered a "physiological" problem. So if they know it is a blood vessel on the nerve, it is definitely ATN.

Barb

Barbara, if you have a link to the National Pain Foundation's classification on Atypical Facial Pain, I would very much appreciate seeing it. I intend to log on with those folks and kick some serious butt.

A much more widely accepted definition of "Atypical Facial Pain" would be any form of facial pain that crosses the mid-line of the face, with simultaneous and similar effects on both sides at the same time. A factually more accurate description is "bilateral facial pain of unknown etiology". As such, it is at best a diagnostic label by reduction, given that it assigns neither mechanism or cause to the observed effects.

In my personal view, any doctor who accepts or promotes the transparently silly notion that face pain can originate in psychological factors should be barred from practice until he or she undergoes retraining. Such notions are not only unsupported by any testable observational data. They also have verifiable negative or even malicious impact upon patient welfare and treatment. The historical roots of the term "psychogenic pain" appear to be in the now-discredited work of Freud (particularly his theory of female hysteria) and Pavlov (operand conditioning). Both were at best speculations when first set forth. And both are now recognized to be outright foolishness contradicted by the great bulk of observational and experimental data.

Sometimes this kind of professionally ignorant cr*p just makes me boiling mad!

Grump, grump (the lone curmudgeon rides off into the sunset, fuming).

Regards all.

Red

Applause and cheers to that one!!!



Richard A. “Red” Lawhern said:

Barbara, if you have a link to the National Pain Foundation's classification on Atypical Facial Pain, I would very much appreciate seeing it. I intend to log on with those folks and kick some serious butt.

A much more widely accepted definition of "Atypical Facial Pain" would be any form of facial pain that crosses the mid-line of the face, with simultaneous and similar effects on both sides at the same time. A factually more accurate description is "bilateral facial pain of unknown etiology". As such, it is at best a diagnostic label by reduction, given that it assigns neither mechanism or cause to the observed effects.

In my personal view, any doctor who accepts or promotes the transparently silly notion that face pain can originate in psychological factors should be barred from practice until he or she undergoes retraining. Such notions are not only unsupported by any testable observational data. They also have verifiable negative or even malicious impact upon patient welfare and treatment. The historical roots of the term "psychogenic pain" appear to be in the now-discredited work of Freud (particularly his theory of female hysteria) and Pavlov (operand conditioning). Both were at best speculations when first set forth. And both are now recognized to be outright foolishness contradicted by the great bulk of observational and experimental data.

Sometimes this kind of professionally ignorant cr*p just makes me boiling mad!

Grump, grump (the lone curmudgeon rides off into the sunset, fuming).

Regards all.

Red

Amen to that!!!



Gloria E. said:

Thanks Barb!

The official National Pain Foundation's definition only adds to confusion. Since, as Red says, there are a great number of cases where the MRI didn't show compression, but when the neurosurgeon went in, there was compression. Which then makes me quote Stef, in saying, that the diagnosis of Atypical Facial Pain is a "wastebasket diagnosis" and has no real basis in reality.

Fortunately, in my case, compression was found on the MRI, but now I have the greatest sympathy for anyone with a diagnosis of Atypical Facial Pain and the diagnosis can't really be made unless there is surgical intervention to confirm the lack of compression. Wow!!!

Another thought that comes to mind...The National Facial Pain claims to know the difference, but do the doctors and dentists know the difference? Then is the difference the same in the medical community??? Since there is such a lack of education for dentist and unfortunately, some doctors, I would have to say that the difference is simply a roll of the dice.

Barbara Russell Kelly said:

Gloria, according to the National Pain Foundation, the difference between Atypical TN and Atypical FP is that ATypical Facial Pain is considered a "psychological" problem and ATN is considered a "physiological" problem. So if they know it is a blood vessel on the nerve, it is definitely ATN.

Barb

I'll add a provisional footnote on this one. I looked up the definition page at the National Pain Foundation, and sent them a note through their contacts portal. The following is the note I sent:

=============================

In an NPF web page on trigeminal neuralgia, the following statement is made:

"Atypical Trigeminal Neuralgia

Atypical TN is a term often used to describe pain that does not have the characteristics associated with classic or typical TN. Patients who have atypical TN often have pain that may be continuous and may be described as dull, aching, or throbbing.

Atypical facial pain is a confusing term and should never be used to describe patients with trigeminal neuralgia or trigeminal neuropathic pain. Strictly speaking, AFP is classified as a “somatiform pain disorder”; this is a psychological diagnosis that should be confirmed by a skilled pain psychologist. Patients with the diagnosis of AFP have no identifiable underlying physical cause for the pain. The pain is usually constant, described as aching or burning, and often affects both sides of the face (this is almost never the case in patients with trigeminal neuralgia). The pain frequently involves areas of the head, face, and neck that are outside the sensory territories that are supplied by the trigeminal nerve. It is important to correctly identify patients with AFP since the treatment for this is strictly medical. Surgical procedures are not indicated for atypical facial pain."

As a layman patient advocate for chronic face pain patients, and at one time webmaster of the Trigeminal Neuralgia Association, I URGE your governing board to consider revision of this definition. Atypical facial pain is in fact not a diagnosis, but a label by reduction for "bilateral facial pain of unknown etiology". I personally consider the assignment of "psychological causes" to facial pain to be a malicious malpractice worked against patients. I challenge you to provide credible references that establish the reality for any form of "psychogenic" pain in facial pain patients. I highly doubt that you will be successful in the effort.

Regards,
Richard A. Lawhern, Ph.D.