For friends who haven't seen my posting in one of the discussion threads, here is a re-post, of correspondence sent to the National Pain Foundation. I will let y'all know what response I get, if any.
Regards, Red
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
This is something which is a common problem among many in the healthcare profession, as well! Atypical Facial Pain is not synonymous with Atypical Trigeminal Neuralgia! Anyone who says they are they same is wrong, and uninformed.
The correct diagnosis is key to receiving appropriate treatment.
My Neurologist diagnosed me with Atypical Facial Pain. I told her that I already had a diagnosis of Trigeminal Neuralgia. It took another Pain Management Clinic to finally give me an accurate diagnosis! Anything that can be done to change the false perception that ATFP and ATN are the same is a step in the right direction.
ATFP is a "wastebasket diagnosis". It could mean one suffers from any number of facial problems, not specifically the path of pain originating the the 5th cranial nerve. The aching, crushing, searing, burning character of pain that we face. It is treatable with the appropriate medication! There is hope, but not if we are misdiagnosed!
Thanks, once again, Red!
I wanted to share this with all of you! You will also be receiving a copy via e-mail. Please read, as it may be pertinent for you to address with some of the healthcare providers you will encounter along your journey!!!!
With much care and conviction, friends, bless you!
Stef
I love this letter, Red, for the way it challenges its intended audience. Thank you!
Christi