Questions for school paper

General General TN & GPN (Old Site)
21

Kudos, Red!

This is as astute and articulate, as what people who follow your writings here have come to expect. I appreciate that you fired in arrow in the backside of ignorance for all of us ATN sufferers.

Whenever the marketing representative from John Hopkins was here, registering members of our site for a webinar they were hosting, I went to their site, and was very discouraged to see that they also lack the incorrect diagnostic name of "Atypical Facial Pain" on a page which describes the symptoms of Atypical Trigeminal Neuralgia.

www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/head...

The page above gives their description of Type I, TN. There is a link to the left side of the page which gives their description of ATFP. Whenever I read it, I could not believe that I was reading that one of our nations most highly regarded research facilities would be getting it wrong! I offer this information, not to negate anything you are saying, because I have written whole posts on this page to the effect that I wholeheartedly agree. I even got one reply stating: "Well, I don't care what they call it, I just want to feel better". Well, the first step on the journey of a path to "feeling better" is a correct diagnosis. Without a correct diagnosis, most of the time, a correct treatment will not be obtained.

I was appalled whenever I received a diagnosis of ATFP from my Neurologist, who passed me off to a "Head and Face Pain Specialist". I had a clean MRI, but I find out that the MRI I was given was not specific enough, from several fairly credible sources, to my condition, including my new Pain Management Physician, who thankfully is familiar with Atypical Trigeminal Neuralgia. I was then given a regimen of medication which is working much better than that which I had before.

Yes, a correct diagnosis is key, and diagnosing ATN as ATFP is a common misconception among healthcare professionals. Unfortunately, I am finding that it is more status quo than I thought. I hope this changes, and soon, as they are two different diagnoses, with different indications for treatment.

Consequently, the Neurologist who diagnosed me as having ATFP referred me to a "Head and Face Pain Specialist". I am hoping that this specialist, who deals mainly in migraines, or so I am told, knows more about Atypical Trigeminal Neuralgia than the Neurologist who sent me to her does.

Thank you for sending that letter to the National Pain Foundation. You so have the resume behind you to question the "big boys", and hopefully have them take note!

You are quite the asset to this site!

You friend and fan,

Stef


Richard A. "Red" Lawhern said:

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.

22

Woohoo!



Richard A. “Red” Lawhern said:

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.

23

Red -

You have no idea what a sense of relief and peace you've given me because I've been mentally fighting with my dual diagnosis of ATN by one neurologist and AFP by my neurosurgeon. I know at some point in the past two years I had seen the exact definition that Barb supplied and subconsciously I felt insulted by the AFP diagnosis. I'm also wondering if my doctor had seen this definition, because of the way he's treated me.

Now I understand and accept that either diagnosis is valid and validating. I'm making a hard copy of your explaination and taking it to my next doctor's appointment. Intellectual ammunition is a beautiful thing.

"Thank You" just doesn't adequately express what I'm feeling.

G-Force

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

24

G-Force and y'all...

I'll add another link to this thread if I may. The following email inquiry went out a few minutes ago on your behalf. This is rather long, but some of us may find it interesting reading.

Regards and best, Red

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

Subj: Treatment of Conversion Disorder in the 21st Century: Have We Moved Beyond the Couch?

Dear Doctor_______

This evening I found the abstract of an opinion statement titled as above, which you co-authored. I have taken the liberty of copying the abstract from Pub Med, below. I found the piece unusually perceptive, if disappointingly short.

I am writing to you as a patient advocate, on-line research provider and website author, with 17 years of hands-on experience in patient support for chronic neurological face pain patients, their families, and physicians. During this time, I have corresponded with over 2500 people affected by chronic face pain of several types. These include Type 1 and Type 2 trigeminal neuralgia, facial neuropathic pain, TMJ disorder, arachnoiditis, acoustic neuroma, and a host of structural brain (and occasionally cardiac) issues.

One of the most disheartening aspects of this history has been the number of times I have seen pain patients referred to psychologists or psychiatrists by primary physicians, with a parting statement to the effect of "I can find nothing medically wrong with you -- this pain is all in your head." Another name for someone dismissed in this way might be "head case". The medical and emotional harm done to patients in delayed or denied pain treatment by such a referral is nearly incalculable.

I would very much appreciate any references you can provide for a critical article that I am considering for my website, on the nature of what is now called "Atypical Facial Pain (AFP)". This disorder -- if it truly is one -- is frequently classified as a psychological disorder related to conversion disorder. While I intend no impertinence, I wish to pose three really fundamental and thorny questions if I may:

(1) Is there any consistent observational evidence for what is now called "somatoform pain disorder" -- as verifiable objective reality and a legitimate medical entity?
(2) Similarly, what observational evidence is there for so-called "psychogenic" pain as a treatable psycho-somatic condition?
(3) When chronic pain and chronic depression become co-morbid, are there any reliable diagnostic measures that distinguish which caused which -- if either?

Whether or not I attempt self-publication of an article, any references that you offer will be passed on to chronic pain patients whom I support in online forums, when they appear pertinent. Depending on your preference, I will be happy either to credit you by name as a source, or maintain your anonymity.

I look forward to hearing from you and from Dr. ______at your earliest convenience.

Sincere best regards,

Richard A. "Red" Lawhern, Ph.D.
Master Information Miner
Personal website: http;//www.lawhern.org
"Giving Something Back"


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

[author names]

Department of Psychiatry and Behavioural Neurosciences, McMaster University, 301 James South, Fontbonne, F416, Hamilton, ON, Canada, L8P 3B6,

Abstract

OPINION STATEMENT: Conversion disorder (CD) is classified in the Diagnostic and Statistical Manual for psychiatry as a subtype of Somatoform Disorders. CD patients present with a wide range of neurologic signs and symptoms and are typically referred to psychiatry after investigations fail to yield a medical or neurologic diagnosis that can adequately explain their disability. The cause of CD is unknown and the underlying brain mechanisms remain uncertain. Controlled studies of the treatment of CD are rare, and almost all information about the effectiveness of particular interventions is descriptive and anecdotal. Comorbid psychiatric disorders are common and require attention. An initial treatment hurdle involves overcoming patients' anger about being given a psychiatric diagnosis when they consider the problem to be entirely physical. Physicians, too, are often uneasy about the diagnosis, doubting the unconscious etiology of the disorder and confusing it with malingering. They are also concerned that a "real" (i.e., medical or neurologic) diagnosis has been missed, and this concern can negatively affect the success of psychiatric treatment interventions. Psychotherapy, either psychodynamic or cognitive-behavioral, continues to be the mainstay of treatment. Key elements of successful treatment include (1) open-mindedness on the part of the physician, with willingness to reconsider the diagnosis if recovery does not occur as expected with psychiatric intervention; (2) patient education about mind-body interplay, using common examples such as the worsening of tremor with anxiety or impaired athletic performance when confidence has been undermined; (3) involvement of allied health professionals such as physiotherapists, occupational therapists, and speech pathologists, when appropriate; (4) hospitalization, if the patient is severely disabled or lives in a situation that supports disability or sabotages recovery; (5) attention to the presence of comorbid medical, neurologic, and psychiatric conditions that may have been overlooked or neglected when the diagnosis of CD was made, or which develop during the course of treatment.