thatboy, started a very interesting post, which Red states dissapeared, but was of particular interest. Where did it go, and can we reinstate it so we can follow red's reply to it?
That boy posed six questions. I will repeat my answers here:
Thatboy: you asked a series of questions in one of the discussion groups. When I logged in, I found the posting had been removed. Not sure why. I'll try to answer here as well as I can here. Feel free to cross-post this to discussion groups.
Q1. Is TN1 and ATN the same medical entity? I understand the difference in symptoms but what I do not understand is why TN1 and ATN are treated with different medicine if both are the same thing (at least the name implies they are the same) yet from what I've read here both are treated differently and TN1 medicine doesn't work on ATN and vice versa.
<Opinion on this varies, but the general trend seems to be that TN1 and TN2 are related forms of pain that present in the same nerve distribution. The two "medical entities" have overlapping symptoms. But increasingly, the designation "Atypical" TN or TN-2 is viewed as a neuropathic condition associated with various forms of physical damage to the nerve, while TN-1 is an inflammation whose precise origins or causes are still not fully known.
Q2. If ATN is very constant, milder pain.... Then why is not considered a neuropathy? I had a neuropathy on my leg before and it was three years of a very specific numb area of my skin that felt weird to touch. I do not recall stabbing pain or a change in pain, it was rather very constant and consistent in symptoms.
<See Q1 above.
Q3. Why is TN1 called true trigeminal neuralgia (I've seen it called like that on some sites), does that mean ATN is rather a symptom of an underlying issue causing the trigeminal nerve to get irritated, while TN1 is a more concrete entity with more specific symptoms and causes?
<Except for the "specific" part, your statement would probably be comfortable for a lot of neurologists. I've talked with many people whose "classic" or typical TN emerged after some form of dental injury, or even after Shingles. TN-1 is a more specific pattern.
Q4. How can you tell the difference between TMJ and ATN? (I understand ATN is a consistent milder pain that can present itself without any of the TN1 stabbing, and TMJ is also a consistent milder pain that can have stabbing pain similar to TN1, so they truly overlap) so what sets them apart? I also know TMJ causes cracking sounds but according to some doctors I've spoken to TMJ not always create cracking noises at the joint. So how do they set them apart? is there any criteria?
<Differential diagnosis between TMJ and ATN can be subtle. Send me an email at ■■■■■■■■■■■■■■■■■■■, and I will send you a long article on how such diagnoses are made and distinguished from one another. It is wise to understand that TMJ is very likely very much over-diagnosed by general dentists who have minimal training in neurology. When you get volleys of lightning strike electric-shock pain which are not sensitive to the position of your jaw, then almost certainly you aren't dealing with TMJ, but with TN1.
Q5. Why do they classify ATN and Trigeminal Neuropathy different? I have seen here that they treat them with the same type of medicine... so why are they different?
<Most likely they aren't different. This distinction seems to be a hold-over from the earlier diagnosis by elimination called "atypical face pain". At one time it was common to put that label on any case of face pain that crossed the center line of the face -- and to imply that the problem was psychological rather than physical. It is now known that bilateral neuralgia and neuropathy are fairly common among face pain patients. But regrettably, some medical authorities who should know better insist on peddling the mythology that bilateral face pain is caused by depression or stress, and is thus somehow less "real".
And finally the sixth question:
Q6. Can arthritis of the upper neck or myofascial pain from bruxism on the face muscles cause symptoms that overlap with TN2?
Yes, though common and rheumatoid arthritis doesn't occur in the muscles. It's primarily a joint disorder. The exception may be Psoriatric Arthritis, which generates a more generalized systemic inflammation in soft tissues. In any event, if the cervical spine is affected by arthritis, patients may respond by grinding their teeth, causing both chronic muscle tension and bruxism.
I hope this lends clarity.
Regards,
Ty Red,
Do you have any references to clarify ""Atypical" TN or TN-2 is viewed as a neuropathic condition associated with various forms of physical damage to the nerve", Reading the literature it seems to be an enigma.
In clarification to your answer to Q6,
Can neck problems potentially cause TN?, I ask this in conjunction to thatboy's previous post in addition to this Q6.
Many thanks Red.
Moth, I'm not sure I have seen any one reference that fully addresses your question. However, if you run a search on "atypical trigeminal neuropathic pain" at Pub Med, you'll pull up 339 hits. Among them is the following abstract. FYI, the term "idiopathic" generally translates to "causes unknown".
An update on pathophysiological mechanisms related to idiopathic oro-facial pain conditions with implications for management.
Abstract
Chronic oro-facial pain conditions such as persistent idiopathic facial pain (PIFP), atypical odontalgia (AO) and burning mouth syndrome (BMS), usually grouped together under the concept of idiopathic oro-facial pain, remain a diagnostic and therapeutic challenge. Lack of understanding of the underlying pathophysiological mechanisms of these pain conditions is one of the important reasons behind the problems in diagnostic and management. During the last two decades, neurophysiological, psychophysical, brain imaging and neuropathological methods have been systematically applied to study the trigeminal system in idiopathic oro-facial pain. The findings in these studies have provided evidence for neuropathic involvement in the pathophysiology of PIFP, AO and BMS. The present qualitative review is a joint effort of a group of oro-facial pain specialists and researchers to appraise the literature on idiopathic oro-facial pain with special focus on the currently available studies on their pathophysiological mechanisms. The implications of the findings of these studies for the clinical diagnosis and treatment of idiopathic oro-facial pain conditions are discussed.
aiculsamoth said:
Ty Red,
Do you have any references to clarify ""Atypical" TN or TN-2 is viewed as a neuropathic condition associated with various forms of physical damage to the nerve", Reading the literature it seems to be an enigma.
Dr. Lawhern, is there any data that measures the effectiveness of PNS or other implants for ATN patients?
I searched for it here and found some promising stories, I guess if the issue is the nerve then one of those stimulators rather than MVD can be the help many ATN sufferers need.
I also have this suspicion... I notice my tongue for example burns on the tip if I lay down and certainly not watching my posture some how has an effect on this.
I wonder if the neck and its muscles etc, do have a say in facial pain, if so then massage can be promising for many!
aiculsamoth said:
In clarification to your answer to Q6,
Can neck problems potentially cause TN?, I ask this in conjunction to thatboy's previous post in addition to this Q6.
Many thanks Red.
I recently posted an article which surveyed our membership for their experience with peripheral nerve stimulation, and reviewed key points from the literature. See the Neuro-Stimulator survey sub-tab in our Face Pain Information menu tab.
REgards, Red
thatboy said:
Dr. Lawhern, is there any data that measures the effectiveness of PNS or other implants for ATN patients?
I searched for it here and found some promising stories, I guess if the issue is the nerve then one of those stimulators rather than MVD can be the help many ATN sufferers need.
Red,
I think we may have our wires crossed.
You stated "But increasingly, the designation "Atypical" TN or TN-2 is viewed as a neuropathic condition associated with various forms of physical damage to the nerve", so searching pubmed for "atypical trigeminal neuropathic pain", is missing the point, when TN-2 is not considered neuropathic (unless you know otherwise, references asked for). I have not come across TN-2 being described as neuropathic. Neuropathic TN is described otherwise?? Known damage.
Your thoughts on the neck as a potential cause of TN would be appreciated. That said if the neck was considered a cause then would it mean it no longer fit the diagnostic profile of TN1, TN2 ? ie no known cause.
I looked at the statistics of the study posted here, wow I didn't know TN was so devastating to women.
80% of patients with TN seem to be women! (I have this theory that women are stronger than men)
It's also interesting that so much medical literature online says the normal age of onset is older than 50, but I read that the number of teens and young adults with ATN is growing (perhaps doctors never took those diagnosis into consideration when they saw young patients)
This is a condition that really needs funding and publicity so that there can be more research going into it!
My reading from multiple sources is that "atypical trigeminal neuralgia" and "trigeminal neuropathic pain" are at least closely aligned and probably pretty much the same thing. And searching pub med as I did reveals at least the association between neuropathic pain issues and atypical trigeminal neuralgia. I candidly don't have time to read 300+ abstracts to find one article that supports that claim explicitly with notes on the mechanisms involved.
The single most evident cause of classic TN (90-minute volleys of electric-shock stabs separated by periods of quiet) is vascular compression of the nerve in the region close to its emergence from the brain stem. MVD to separate nerve from blood vessels is 900% effective in these cases. But there are also cases where this pain pattern isn't clearly associated with vascular compression or trauma per se. Those cases are called "idiopathic".
With ATN or "Trigeminal Neuropathic Pain", the range of potential causes seems wider, and the character of the pain itself is less consistent. We know that constant achy burning, boring pain can emerge in the face after dental injury, sinus surgery, problems with brain tumor or aneurism or AVM, Eagle Syndrome, TMJ disorder,Shingles, and probably a few that don't directly come to mind at this instant. The "diagnostic profile" tends to be imprecise and often ambiguous. Sometimes there is no discrete event or trauma at all. But the pain itself is most similar in character to peripheral neuropathy pain.
As for ATN originating in neck problems, I just don't see the evidence for that. Co-morbidity yes. But not a cause-and-effect relationship.
Regards, Red
You might consider looking up a Facebook page called "Light Up for Teal". It is concerned with raising the visibility of TN as a disorder and encouraging more research.
Regards,
thatboy said:
I looked at the statistics of the study posted here, wow I didn't know TN was so devastating to women.
80% of patients with TN seem to be women! (I have this theory that women are stronger than men)
It's also interesting that so much medical literature online says the normal age of onset is older than 50, but I read that the number of teens and young adults with ATN is growing (perhaps doctors never took those diagnosis into consideration when they saw young patients)
This is a condition that really needs funding and publicity so that there can be more research going into it!
TN1 is more of a central neuropathy type issue right pretty much in the ganglia where a vein compromises it, While ATN is most likely a peripheral issue rather localized along the nerve, am I right?
From my limited medical knowledge I understand that tingling/pins and needles = irritation of nerve (which is what I have), numbness is injured nerve, and then weakness is pretty much dead nerve.
http://nerve.wustl.edu/nd_injury.php
there is obviously something irritating my nerve, because I get this recurrent burning/pin needle sensation on my upper front teeth and lips/tongue that lasts hours!!! There HAS to be a cause, not just idiopathic!
What I don't understand is how can they not see where the nerve is affected! (or can they?)
I mean they can put a robot on a comet millions of miles away from earth, how in the world can't they figure out things like ATN?
I am quite sure body structures have to do with this... especially tense tight muscles!
Otherwise how can it be that my nerve sensation gets worse with certain postures (especially when I lay down a certain way the sensation increases)
Another thing that I don't get is, neuropathies make your skin sensitive to cold air, or touch, the cloths can hurt you but I have none of that.
I think body posture, computers, stress, anxiety, bruxism, jaw movement, bad habits have a lot to do with this, they all come together and screw your body... sort of how tight low backs can cause sciatica on people who tend to put their stress on their backs.
Whilst I don't want to be antagonistic, fpa-support.org, clearly separates, neuropathic pain (TNP) from TN2, so why do you put them in the same park. Searching "atypical trigeminal neuropathic pain" is meaningless due to search engine software if you don't read the abstracts. You say "As for ATN originating in neck problems, I just don't see the evidence for that", with your argument, searching "cervical dysfunction trigeminal neuralgia" throws up 81 hits, searching for "neck pain trigeminal neuralgia" gives 129 hits, but neither without reading the abstracts could you conclude neck pain/ dysfunction causes/ isn't implicated with TN. So, it is an opinion that atypical TN? neuropathic tn is one of the same, or at " least closely aligned and probably pretty much the same thing". Stating so without reference is well.., . I appreciate an opinion, but lets call it that.
Regards.
The definitions offered by fpa-support.org for various types of "neuropathic facial pain" can be read here: http://fpa-support.org/classifications-of-neuropathic-facial-pain/ .I leave it to others to decide whether the distinction between TN Type 2 and neuropathic pain is clear.
Red,
Thank you for all of the time and attention you give this group. I have always appreciated your knowledge, which you have globally prefaced by saying that you are not a medical professional, and thus, your opinions and thoughts are truly educated opinions and thoughts.
Beth
As I understand it, distinction made from TNP and TN type 2 is more of a difference in cause rather than in symptoms. TNP is a result of unintentional damage through surgery or injury, whereas TN type 2 is idiopathic. The treatments are currently very similar. Diagnoses are a way for medical professionals to communicate with each other, which is why the differences between different ones can seem subtle or even inconsequential.
Toothache, I would largely agree with your observation. I might add that diagnosis is also intended to influence treatment choices under best practices.
Over the 20 years I've been active in patient communities, I've seen and heard a lot of cases where the most honest diagnosis would have been "be darned if I know". There tends to be a lot of uncertainty and trial and error in face pain practice. As one of the members of the TNA Medical Advisory Board once told me, it's asking a lot to get multiple doctors to agree on just the terminology, much less any sense of accepted best practice in treatment for chronic neuropathic face pain. I ran into that while coordinating professional validation of my revisions to the TN Fact Sheet for the US National Institutes for Neurological Disorder and Stroke (NINDS).
At the current state of discussion, the distinction that TNA/FPA makes between Type 1 and Type 2 TN is the proportion of pain that is intermittent versus constant. BOTH are assigned the umbrella designation "idiopathic". However Type 1 TN is almost universally accepted as a nerve inflammation process growing primarily out of vascular compressions and demyelinization of the nerve due to mechanical pulsing from an artery or vein.
Trigeminal Neuropathic Pain has the same character as TN2, but can be assigned to identified causes in some form of trauma to the nerve. Whether that distinction makes a difference has yet to be demonstrated.
Regards and best,
Red
Theoretically there could be differences in treatment - in the future, perhaps microsurgical nerve repair could progress to the point where clear cases of TNP could be repaired. You’re right, Red, at the moment there is no real difference in treatment of TNP and TN type 2. Nerve repair has to occur within hours to days for it to be reliably successful. Once neuropathic pain has set in, attempts at surgical repair don’t seem to be very successful. The current imaging technologies also can’t visualize damage to small nerve fibres well, so it’s difficult to identify even what is going on, much less fix it.