Oregon Health and Science University Classifications of Facial Pain. Do You Agree?

www.ohsu.edu/health/health-topics/topic.cfm?id=13919

FACIAL PAIN: CLASSIFICATION

  • Trigeminal neuralgia, type 1, (TN1): facial pain of spontaneous onset with greater than 50% limited to the duration of an episode of pain (temporary pain).
  • Trigeminal neuralgia, type 2, (TN2): facial pain of spontaneous onset with greater than 50% as a constant pain.
  • Trigeminal neuropathic pain, (TNP): facial pain resulting from unintentional injury to the trigeminal system from facial trauma, oral surgery, ear, nose and throat (ENT) surgery, root injury from posterior fossa or skull base surgery, stroke, etc.
  • Trigeminal deafferentation pain, (TDP): facial pain in a region of trigeminal numbness resulting from intentional injury to the trigeminal system from neurectomy, gangliolysis, rhizotomy, nucleotomy, tractotomy, or other denervating procedures.
  • Symptomatic trigeminal neuralgia, (STN): pain resulting from multiple sclerosis.
  • Postherpetic neuralgia, (PHN): pain resulting from trigeminal Herpes zoster outbreak.
  • Atypical facial pain, (AFP): pain predominantly having a psychological rather than a physiological origin.

*Wikipedia descriptions, which many dismiss because they do not come down from a medical facility, seem to be soundest from what I've read from patients who describe their pain, but that is a laymen's opinion.

So, I submit to you the only Classifications I have read on the diagnoses of FACIAL PAIN I have been able to find on the web.

The major research facilities/hospitals skirt the classifications, addressing only Classic TN.

What do you think of these? Thoughts? Ideas? Feedback?

Feedback?

"The presumed cause..."

http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm


"Several theories exist..."

http://en.wikipedia.org/wiki/Trigeminal_neuralgia#Cause


"In all cases, though...

"http://www.emedicinehealth.com/trigeminal_neuralgia_facial_nerve_pain/page2_em.htm#Trigeminal Neuralgia Causes

"a well known clinical entity..."

http://www.ncbi.nlm.nih.gov/pubmed/19487899 ----- The (((condition))) has no clear-cut cause.

Everyone will have different opinions, as when you Google - {trigeminal neuralgia causes}, you get 310,000 results.

However, and with further discussion;) A. M. Kaufmann & M. Patel Centre for Cranial Nerve Disorders at the University of Manitoba, Canada define seven (7) forms of TN: typical TN, atypical TN, pre-TN, multiple-sclerosis-related TN, secondary TN, post-traumatic TN (trigeminal neuropathy), and failed TN.

Stating these forms of TN should be distinguished from idiopathic (atypical) facial pain, as well as other disorders causing cranio-facial pain.

(((Stef))), I just have more links, adding: "Peer assessment of journal quality in clinical neurology"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773051/

I enjoy "Neurology Now" - "Neurology Then":P)! Their TN section has 26 results, ranging from 09/2007 - 04/2010:

http://journals.lww.com/neurologynow/pages/results.aspx?k=trigeminal%20neuralgia&Scope=AllIssues&txtKeywords=trigeminal%20neuralgia

Hospitals seem to offer, (with a hint of sarcasm) the "same fare" in treatment(s), due to the lack of clinical trials and research dollars...in my humbling experiences, and observation.

Sadly, this could become a New York Knicks discussion. Hope floats! bob

Thanks for the other links, Bob. I will open them up when I have time to actually read more. It's been a sort of busy Easter Weekend. I had just been meaning to post this for awhile, because, I liked the fact that they had OHSU had broken them down with referring to Type II as ATFP, as is the case when I went to the sites of John Hopkins, Cedars Sinai, and Mayo, unless they have updated since I last checked.

Sadly, I don't know jack about sports. I have followed Atypical Trigeminal Neuralgia with rapt attention and can't help but wonder, because I am still learning too, what the difference is between the symptoms of Neuralgia and Neuropathy. That is what I am going to study on after I read your links.

The more we read, the more we know. I do know that most of the major medical teaching and research hospitals, do not address ATN or refer to it's symptoms as ATFP, and that could possibly lead to some train wrecks as far as treatment of the problem, but that's just my opinion, and we're all entitled to those.

I look forward to some more reading! I've always loved to learn. I just never dreamed that fate would call me to dwell/learn on this rare disorder, but know this. I have the best of intentions and I sincerely want to help. I am on the very verge/cusp of projects which would be working all of the angles, I can think of, to help the portion of facial pain patients with the symptoms of Atypical pain in the Trigeminal Nerve. It has been my experience, both as a patient, as a friend to many now, and as an avid reader on whatever I can find on the subject, that this portion sufferers are poorly understood and, thus under-served by research. Of course, there may be a problem with funding. Perhaps the major facilities do not want to categorize the disorder as anything but the generality that is, "Atypical Facial Pain", because they don't know how to treat it effectively, really. Understand, this is only a theory . . . . .

I am trying to help, and to understand more myself. I learn something new almost every day!

Thank you for responding, all sarcasm, which you may or may not have been implying, aside, because I never know! But, I do know Dr. House is one of your idols, so I do keep that in mind, always!!! ((((BIG HUGS)))))

Your friend,

Stef

P.S. I must have hope to get out of bed in the morning, even if it does only float.

True that.

Just speaking strictly on the topic of the “facial pain”, I have not very little literature addressing any type of facial pain except for Trigeminal Neuralgia, and they usually refer to ATN or Type II, as Atypical Facial Pain, which can be a psychosomatic illness by definition.

No matter the cause of the symptoms, I just hope that this changes. Many suffer needlessly. There are effective medicines which treat Type II pain. Also, we need to be more widely acknowledged.

Let not the fact that facial pain, all types can be caused by many sources. That was not the intention. Thank you for your post as well.

Stef

In one of your links, I found a definition of Type II, or ATN which was classified as ATFP. Often ATFP is not taken seriously by physicians. It is definitions like this that make me go GRRRRRRRR (and I assure you that is a very non-intimidating sound coming from me, but still).

Below describes, what many informed physicians now know is Atypical Trigeminal Neuralgia (actually it seems to be the prevalent type on this site). It has these symptoms, mostly. It doesn't respond well to surgery, typically. The same medicines don't seem to help with it, as do with Type I.

If they are both disorders of the 5th cranial nerve, and the path of pain is that of the 5th cranial nerve, then why would it be called "Atypical Facial Pain", anywhere? I have to, with all due respect for people with degrees in medicine who agree with this diagnosis, disagree with it.

The following description of ATN seems dangerously ignorant to me, but that's just me:

"Atypical Facial Pain

Atypical facial pain (or idiopathic facial pain) is characterized by deep, achy, constant, pulling or crushing pain that involves diffuse areas of the face and head. The pain fluctuates in intensity and severity. Trigger points on the face cannot be found, the pain is often worse at night, and may be aggravated by activity.

In the majority of cases, only one side of the face is affected, but pain on both sides is also possible. The symptoms may initially appear similar to trigeminal neuralgia, although progress to an atypical facial pain pattern. The diagnosis is made when the origin of pain is undetermined or when symptoms do not correlate with any other facial pain syndrome. Atypical facial pain affects more woman than men, and is often accompanied by depression. However, this disorder is not of psychogenic origin.

Treatments: Unfortunately, atypical facial pain is typically difficult to treat, and surgery is generally avoided. While radiofrequency rhizotomy has been performed, such destructive interventions may actually worsen the pain. Tricyclic antidepressant medications can provide sufferers with modest relief of their symptoms. Conventional analgesic drugs, including opioids, can also be effective in selected individuals, often under the direction of a comprehensive pain management program."

*This diagnosis of ATFP is one that you find repetitively in journals of medicine. THIS DIAGNOSIS SUMMARY OF ATYPICAL FACIAL PAIN DESCRIBES ATN, or TYPE II TRIGEMINAL NEURALGIA. I do not understand why, if the path of pain follows the path of the 5th cranial nerve, why this has not been updated yet.

I spoke with a physician, at one point, in my treatment who said that medical awareness of "Atypical Trigeminal Neuralgia", or Type II, was still being categorized as ATFP, due to yes, lack of research and awareness that the classification had been updated.

It is classifications like this one that make me a bit jittery about whether or not they understand that the pain comes from the same origin as TN, but presents with different symptoms.

If is not really that difficult to treat the symptoms of ATN in a lot of patients. Doctors are simply hesitant to do it, because, in many cases, even though the symptoms present as a problem with the Trigeminal Nerve, it remains, in many, an invisible illness. As we know, many times, the source of compression, or the compromised myelin sheath cannot be found with the diagnostics typically currently run.

I think what has been demonstrated here by all of these different links, is that there is no gold standard of definition of this disorder. They are still "all over the board with this one".

Yes, it can have many different causes, but ATN is characterized again and again by throbbing, crushing, burning and typically constant pain, without remission. It wrecks lives.

I was one of the blessed ones who fought until my pain was no longer dismissed, and I feel, finally, close to adequately treated.

I just want that for other ATN patients, and the fact that there is so much controversy surrounding the validity and the origin of this illness, yes, hope must float and float!!!! (and what is tortured suffering, as I see it, will continue to prevail amongst the ranks of those with Type II, or ATN).

That's my opinion, and my opinion, is that it is the best link I have found so far and that I would like to see that Neuro!

I believe my OHSU's classification system hits the core of Type II right on the nose!!! I was so happy to see it so accurately described.

TN and ATN patients may all have different "causes" for their symptoms, but the symptoms are different. Therefore, the treatments are different. What works for Type I has a much lower success rate for Type II. That is all I am trying to make anyone understand.

I am not out to be a "know it all", or act like I am an expert. I'm not. But, I've seen and heard enough here, on this site alone to know that there are clearly, two types of true TN pain, mainly. One has options, the other is a very, very misunderstood illness, and is, in most cases, extremely poorly managed.

I just want doctor's to be more compassionate, and understanding of these patients who suffer all of the time, with something that, if diagnosed correctly and treated correctly, can be helped. I have links which tell how this may be done. I am just too tired to post them right now, but I will be re-visiting this Discussion.

Thanks all, and best wishes for compassionate and informed care.

Your friend,

Stef



Bob Snodgrass said:

"The presumed cause..."

http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trig...


"Several theories exist..."

http://en.wikipedia.org/wiki/Trigeminal_neuralgia#Cause


"In all cases, though...

"http://www.emedicinehealth.com/trigeminal_neuralgia_facial_nerve_pa...

"a well known clinical entity..."

http://www.ncbi.nlm.nih.gov/pubmed/19487899 ----- The (((condition))) has no clear-cut cause.

Everyone will have different opinions, as when you Google - {trigeminal neuralgia causes}, you get 310,000 results.

However, and with further discussion;) A. M. Kaufmann & M. Patel Centre for Cranial Nerve Disorders at the University of Manitoba, Canada define seven (7) forms of TN: typical TN, atypical TN, pre-TN, multiple-sclerosis-related TN, secondary TN, post-traumatic TN (trigeminal neuropathy), and failed TN.

Stating these forms of TN should be distinguished from idiopathic (atypical) facial pain, as well as other disorders causing cranio-facial pain.

(((Stef))), I just have more links, adding: "Peer assessment of journal quality in clinical neurology"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773051/

I enjoy "Neurology Now" - "Neurology Then":P)! Their TN section has 26 results, ranging from 09/2007 - 04/2010:

http://journals.lww.com/neurologynow/pages/results.aspx?k=trigemina...

Hospitals seem to offer, (with a hint of sarcasm) the "same fare" in treatment(s), due to the lack of clinical trials and research dollars...in my humbling experiences, and observation.

Sadly, this could become a New York Knicks discussion. Hope floats! bob

Other patients are as confused as I am about Atypical Trigeminal Neuralgia, or Type II, and "Atypical Facial Pain". Please see this thread: http://braintalkcommunities.org/forums/showthread.php?t=

This is good stuff! See this link. Correct me if I am wrong, but it states there is a clear difference, and the classification system almost completely concurs with the original one I posted.

www.nationalpainfoundation.org/articles/820/definitions

Atypical Facial Pain: http://www.ygoy.com/index.php/atypical-facial-pain/

In my opinion, Type II TN patients should NEVER be given the diagnosis of "Atypical Facial Pain".

Ok, she steps slowly and humbly down off of her soapbox and goes to bed.

Goodnight and good blessings to all,

Stef

"This is good stuff", says Dr. (((Stef))) House! (I haven't watched this season, is he still popping Vicodin?)

Your link to "braintalk", doesn't:( This one is fairly active;)

http://braintalkcommunities.org/forums/member.php?u=8289


OHSU Healthcare Locations - Neurological Surgery (Adult) http://goo.gl/IQ12n

Services include, Neurosurgical management, treatment, (blah, blah - my sarcastic comment, not necessarily disrespectful) the last, I believe is the most important - Comprehensive pain care, including psychological evaluation and counseling with special emphasis on surgical treatments of medically [intractable pain] problem.


Been there, don't particularly care for the end-result of "facial pain over-medicated management".

The classification system? LOL! PAIN is PAIN. Though it does allow me to pause...as to how I should describe TN1, a "spontaneous onset" of "(temporary pain)", that grabs my attention. Notwithstanding any emotions to intractable pain, and thus far, a seemingly "failedTN".

My PAIN brings me to tears, though I don't whine, playing Neurology, the game! I'm kinda working on answers, with a handful of my "new best specialist friends":P)!

Film at 11:00:) Love to ALL! bob

I liked this one I found today.

Atypical trigeminal neuralgia. A type of facial pain that may have some of the characteristics of classic TN (i.e. sharp stabs and trigger points) but also symptoms that aren’t common to classic TN (i.e. constant, aching or burning pain in addition to the stabs). Sometimes referred to as “TN-2.”

http://www.fpa-support.org/2011/01/glossary-of-terms/

Bob, I'm not sure what you mean, but yeah, House rocks, and well . . . .the Vicodin keeps him going. Who's to judge?

Yes, not all Facial Pain is created the same, and I look forward to reading what you dug up.

I am simply trying to call attention to one kind, that is an emerging pattern that I see among many people, Type II, Atypical Trigeminal Neuralgia. I'm not trying to take it all on.

I did wonder what people would have to say about the OHSU Classification System. I was just excited to find it. I don't completely agree with it's vague description of Type I and Type II and it's reference to ATFP. I really am not sure if ATFP exists. I think it is just a diagnosis that they like to hand out when they don't know what's wrong.

If the pain, however it presents, follows the definitive path of the Trigeminal Nerve, I do believe it's a form of Trigeminal Neuralgia! But, there are two main types! I feel like Type II patients are falling through the cracks of the system.

So, MVD doesn't help them much, neither does much else besides medication combinations. But, what are they going to do? Deny them medications which bring them out of Chronic Intractable Pain until they want to die? I know several people AT THIS POINT!

(and isn't popping a pill which is probably not addictive because it is being used for Chronic Pain, in the upshot, better for maintaining quality of life than just letting ATN Type II suffer? In my mind, uh . . . .that's a no brainer. It's what they make the meds for. YES!!!!)

Oh Bob, it's 11:04. When are you going to start the film? I can't wait to see!!!!!! Darnit!

Ok, in pain right now, starting in back teeth and cheeks, kinda crushing. . . . . .errrrrrrrrghhhh! By the way, Bob. I'm not crying either. It's creeping in and if I don't take my meds, it will get on top of me and I won't be able to do the dishes!

Hugs and love to all as well,

Stef

But, these are all very broad, and none of the sources are specific to “Facial Pain”. Facial Pain has, at the very least, been attributed to a few causes, by most sources.

I suppose, what I mean is that, if it follows the path of the Trigeminal Nerve, it’s either Type I, or Type II TN, from all that I’ve read on the subject of “Facial Pain”.

Living with TN. We’re all trying to, but there are type main types. One is being ignored and undertreated.

http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm

Patients are considered to have Type 1 TN if more than 50 percent of the pain they experience is sudden, intermittent, sharp and stabbing, or shock-like. These patients may also have some burning sensation.

Type 2 TN involves pain that is constant, aching, or burning more than 50 percent of the time.

______________________________________________________________________

As a clearly defined sufferer of Type 2, as they describe above, I am simply questioning clarification of this syndrome by different sources. I am letting this thread serve now as a way of "crying out to describe it". .

Science has, at the very least, defined that there are two types of TN "constant aching, or burning more than 50% of the time". It is not as descriptive as Wikipedia, but here is another description of the two types.

Finding this was also validating.