Is FPA TN research barking up the wrong tree?

General General TN & GPN (Old Site)
21


For many of us who do have TN, when non patients come here pushing treatments, it can cause a lot of hard feelings, and sorry, but your bias truly is showing.
aiculsamoth said:

Fair point Richard/ Red,

Although I have mentioned it, I am a UK based Osteopath, though I am unsure what bearing it has, since I don't/ have not/ will not advocate a treatment modality. I am not a TN patient but do not expend my time for fun, I have no other interest other than helping maybe just one TN patient. Being a member of this forum brings no financial benefit, just adds to stress and tension in my life, which I am willing to take on board. Sure I've tried to make my point several times, and will continue to do so, I may have been more successful before but...for misplaced attitudes. I originally didn't want to mention my medical status because I didn't want to be seen to be adding any bias. As a NON TN patient, I feel is a bonus for obvious reasons.

22

Saraiderin,

I would like to apologise to you for my abhorrent behaviour, but it is difficult to apologise to people I don't know for things that they don't understand.

saraiderin said:


For many of us who do have TN, when non patients come here pushing treatments, it can cause a lot of hard feelings, and sorry, but your bias truly is showing.
aiculsamoth said:

Fair point Richard/ Red,

Although I have mentioned it, I am a UK based Osteopath, though I am unsure what bearing it has, since I don't/ have not/ will not advocate a treatment modality. I am not a TN patient but do not expend my time for fun, I have no other interest other than helping maybe just one TN patient. Being a member of this forum brings no financial benefit, just adds to stress and tension in my life, which I am willing to take on board. Sure I've tried to make my point several times, and will continue to do so, I may have been more successful before but...for misplaced attitudes. I originally didn't want to mention my medical status because I didn't want to be seen to be adding any bias. As a NON TN patient, I feel is a bonus for obvious reasons.

23

Adam (Moth) and participants in this thread.

So far, I haven't heard anything from the Ben's Friends Advisory Board to restrict my response here, so I will make a start on Moths invitation to comment on the paper "To MVD or not to MVD? Trigeminal Neuralgia – A cervicogenic model." The paper has been featured in the TN Basics tab above.

As Moth is aware, I am critical of the paper for several reasons. That said, I invite anyone in the thread to consider and comment upon four central issues which I shall try to pose as fairly as I can and with courtesy to all who participate here, including Moth.

(1) What are the central points or conclusions of the paper?

(2) How strong does the medical evidence for these points seem?

(3) What background in training and experience does the author bring to the paper -- thus how authoritative should we regard its conclusions to be?

(4) What can we as readers take away for our own constructive use?

These questions may occupy more space than a single posting permits. If so, I will try to continue the thread if I run out of space.

FIRST: My reading of the paper suggests a few central points:

(a) There is no end-all medical explanation or model for chronic neuropathic facial pain. Classification systems are still provisional. Ultimate mechanisms have not yet been reliably confirmed, and there is still much to learn. [On this point, I believe we agree].

(b) There is some medical evidence for models of trigeminal pain other than microvascular decompression. One of those models may involve damage or compression of "trigeminal nerve roots" in the region of C-1-C2 in the cervical spine. [Moth presents his understanding of this evidence, on which I will comment below].

(c) Currently accepted medical practice does not assess for nerve damage in the cervical region when Trigeminal Neuralgia or facial neuropathy is suspected. Nor is significant current medical research being done to explore that possibility. I believe it may be fair to suggest that Moth feels frustration over these realities. [I would agree that this is the present status quo, and I hope I have appropriately summarized it].

(d) The author believes that many patients are inadequately treated or actively harmed by MVD and that a greater reliance should be placed on the physiotherapy techniques of osteopathic medicine with a de-emphasis of invasive surgical procedures. [On this point, I disagree in principle, and will comment at greater length below. Likewise, especially but not exclusively on this one, Moth, please correct my reading if I over-state or distort your conclusions.]

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

SECOND:

How strong does the medical evidence seem to be for the central points of the paper?

Moth clearly believes that there are grounds for reconsidering the microvascular compression model in Type I TN and perhaps for re-interpreting outcomes data on microvascular decompression procedures, even when they work. I have some difficulty in responding to this position meaningfully. Although I am reasonably well read on the existing medical literature of face pain, I am quite definitely NOT a neuroscientist. I don't have the depth of education and experimental exposure that I believe are needed to assess the credibility and plausibility of the many references that Moth has brought together in the paper. And I don't have six months to devote to an exclusive deep-dive research effort to acquire such a background.

What I do know is that there are standards of science which apply to determining how well a theoretical model actually describes medical reality. There is strong evidence in randomized double-blind trials versus weak evidence in individual case studies. Weakest of all are anecdotes published on web sites that have an economic interest in gaining patient acceptance of their products. All of us have seen that self-interest operating in the Net, though not as a rule on Living With TN.

But the potential for investigator bias must lead us to great care in extracting conclusions from published work, including the article we are discussing here. Medical practitioners cannot generalize from individual case reports, and there are a few such reports among Moth references. Nor should we accept uncritically statements that begin with "we would expect", as applied to a conclusion or proposal of medical research. We need to ask "who would expect, and is there a body of evidence that supports this expectation?" These are questions I have suggested to Moth privately, and I believe they are germane.

It is vital that we understand that there is much we simply do not know -- and which as medical laymen (lay persons? the term isn't exclusively male), we perhaps cannot know without the advice of people more deeply grounded in neuroscience. In the meantime, I believe we have a strong ethical requirement not to fall prey to over-generalization -- even if we see evidence that may take us part of the way toward a different point of view on treatment of chronic face pain than that now regarded as "best practice".

As H.L. Mencken once reminded us, "for every problem there is at least one solution which is simple, plausible... and wrong." My central concern in Moth's article, is that I believe he may have fallen into this trap when he posed his conclusions in the way he did. I do not accept an either/or hypothesis for models of face pain. I don't believe we have to choose between vascular compression or cervical compression as "causes" for chronic facial pain. To me -- and founded on nearly 20 years of reading the medical literature -- both hypotheses are credible proposals and BOTH might apply in different patients. They are not mutually exclusive. But to represent them as so seriously weakens the paper as a proposal for engaging the interest and concern of researchers and research institutions.

I will continue my thoughts on the third and fourth issues I've just identified, in a further posting. It may be tomorrow before I get back to complete this commentary.

Regards,

Red

24

Thank you Red,

Very much an improvement on your private assessment, I look forward to part 2, although I feel the way you are going, Mod support might want to request more server capacity.

25

We have plenty of server capacity and decent respectful conversation is always welcome.

26

Keep in mind all are not patients but have an interest - Aiculsamoth who has treated hundreds if not thousands and researches in the area, Red who is not patient but is married to one, (neither of of whom I necessarily agree with) there is at least one retired surgeon who questions AVM as the gold standard of treatment and on goes the list. All of who care and have something to offer. It it fits wear it, if not toss it. Of course folks have a bias. Show me one that doesn't.
saraiderin said:


For many of us who do have TN, when non patients come here pushing treatments, it can cause a lot of hard feelings, and sorry, but your bias truly is showing.

27

When I started, I suggested that my response to the article on cervicogenic facial pain would focus on four issues:

(1) What are the central points or conclusions of the paper?

(2) How strong does the medical evidence for these points seem?

(3) What background in training and experience does the author bring to the paper -- thus how authoritative should we regard its conclusions to be?

(4) What can we as readers take away for our own constructive use?

I wish now to focus on the last two points.

THREE

Adam please weigh in to correct any misconceptions in what follows.

You sign yourself as a Doctor (Diplomate?) of Osteopathy and a Doctor of Naturopathic Medicine (ND). In the US, the DO certification would commonly follow an MD degree, involving about 300-500 hours of additional medical training with a different and somewhat "holistic" flavor. The ND qualification in the US is also taken after completion of a Bachelors Degree, and involves a four year graduate level program. 17 US States license and regulate naturopathic doctors. Not all US States license Naturopathic physicians to practice in the same ways as MDs.

Requirements outside the US are somewhat different for both qualifications. The DO certification can be taken as a four-year undergraduate program, without an MD degree. Since you sign yourself as Mr rather than as MD, I must infer that you were trained in one of the undergraduate programs in the UK or elsewhere. Both specialties represent a different flavor of medicine than we commonly see in US general practitioners. In some quarters of the medical profession, both have their detractors as well as their advocates.

What is probably most important for our current discussion is that like MD general practitioners, both DOs and NDs see a range of patients -- and like general practitioners, most practitioners do not specialize in research and are not trained deeply in the methods of research. They are certainly more knowledgeable of medical practice than laymen -- and more knowledgeable than I personally happen to be as a medical layman who reads a lot of medical literature. But the "measure" if there is one, of a physician's academic credentials tends to be built upon their record of peer-reviewed publications in medical journals.

When I responded privately to Adam's article, one of my expressed concerns was that he did not seem to have a record of publications from which anyone might independently establish his status as a qualified expert in the field on which he was commenting. I found no citations to his name on Pub Med, and that is generally a fair indicator that a physician hasn't published in wide-circulation journals. Thus I was concerned that he might be speaking without authority, and potentially to the wrong audience. I still have that concern.

Please understand, however, that I am not seeking in this commentary to discredit Adam as a medical professional or as a commentator on medical practice. What I am seeking to do is to establish that he may not be a "research expert", even though he is knowledgeable of parts of the medical literature and of accepted medical principles. To be useful in changing accepted best practice in facial pain assessment or treatment, I believe this article needs to pass muster in professional peer review among people who ARE research experts. The Devil is in the details on a thing like this.

I would also suggest that there is a glaring omission from the considerable ground covered in this article. As a practitioner of osteopathic and naturopathic medicine, Adam may have had opportunity to assess patients with face pain, and to "test" in some way, the conclusions he has derived from his research of literature. However, none of that practical experience shows in the article. Has he successfully or reliably been able to distinguish patients who will benefit from physiotherapy from others in whom MVD may be a more appropriate procedure? How? Has he ever successfully treated (and later followed) a patient who was previously diagnosed with neuropathic facial pain, by the techniques of his training? With what persistence of effects? We simply don't know. That seems to me a missed opportunity.

I don't wish to put words in anybody's mouth, Adam. So I'll simply invite you to share your own background and your experience in treating face pain patients as a part of this thread. I don't think your article can properly be evaluated without these elements.

FOURTH -- the takeaway, will follow tomorrow morning.

Regards, Red

28

Okay, I have tried having my upper cervical spine adjusted to see if I would get pain relief from my neurologist/pain specialist/PCP diagnosed (at the time) Trigeminal Neuralgia. It did not work! What I was left with was more pain and now I have two discs in my neck that herniate (PT has decompressed them but I was told I am now forever prone to this). I have had my TN operated on. I was told that the trigeminal nerve does have some roots (not sure exactly how this works) under the C1 vertebrae (thus how they do the DREZ procedure) that it is not a spinal condition.

I truly believe in the research being done by the Facial Pain Research Foundation. I am not only a TN patient, but a Biology/Premed student. They are looking in all the right directions to find a solid treatment and ultimately a CURE for us. Isn't that what we all want? Let's leave it to the experts (we have the top people in the field working on this) to figure out the best ways to help us.

**Side note on my personal beliefs: technology is ever evolving. We will in the future have better imaging capabilities and most likely will be able to learn much more about the brain than we already know now. It's a known fact that a vascular compression isn't always to blame for TN. I'm a prime example. My left side was decompressed, three blood vessels.....relief lasted two weeks. It was determined, due to underlying medical issues, that a partial sensory rhizotomy was my best option. Best decision ever! I'm bilateral. The left side was done in May, 2015 and the right in October, 2015 and I can say that I already am noticing at least an 80% improvement. This just goes to show though that there is no one answer or cookie cutter way to treat TN.**

29

I promised Part 4 of my response to the article on a cervicogenic model for facial pain. There are two dimensions in this part. First, what might I (or a face pain patient) take away from Adam's research, and second, how might he choose to make his points more effectively and with greater credibility to the scientific community which must eventually be engaged if his work is to have a positive impact on practice standards.

My takeaway (partly from the article and partly from nearly 20 years of reading the medical literature as a technically trained layman trying to help patients understand what is there):

1. As Ron Blair notes above, there is no one-size fits all answer to either causes or management of chronic neuropathic facial pain. There is ample evidence that more than one neurological process is probably involved, particularly in the distinction between Type I and Type II TN. The character and patterns of pain in these two diagnoses are substantially different, and the types of meds most effective in the two diagnoses are different (anti-seizure meds versus TCA meds). There are also cases that do not exactly fit either symptom profile. Nerve damage during dental surgery or root canal almost certainly plays a role in Type II TN for substantial numbers of people. And many cases of face pain first present within days of a whiplash injury in automobile accidents. Whether the face pain is generated in the C1-C2 region of the nerve root or further up-stream in displacement of the nerve by mechanical stretching of the brain stem is not clear to me. The ambiguity needs to be acknowledged.

2. There is also ample evidence that microvascular compression may not be a full explanation for "the cause" even of Type I TN. But MVD surgery at present is the most consistently reliable and long lasting procedure for long-term pain relief in Type I patients who do not respond well to medication. Literally tens of thousands of people get years of relief from MVD. Probably the second most successful procedure is RF Rhizotomy (partial nerve section). However, the latter has the disadvantage of being a destructive procedure. Both have limited effectiveness against Type 2 TN pain. Both procedures wear off over time in at least half of the patients who receive them. And there is risk in either procedure for making pain immediately worse in a minority of patients.

3. There is limited observational data to suggest that upper cervical manipulation may help some patients some of the time. Ron's report above seems to be one of the unsuccessful cases. The TN Association has hosted presentations by chiropractors in its US National conferences. And members here may search the archives for mention of chiropractors and outcomes from chiropractic treatment. Chiropractic therapy may not be the same as osteopathic therapy, but I believe there are some elements in common. Adam can add nuance to my impression if he chooses. My personal observation is that the trend in chiropractic outcomes is that fewer than half of those who use a chiropractor are successful in getting sustained pain reduction. This is, however, a personal impression, not a researched statistic. In any event, my takeaway from these observations is that IF the trigeminal nerve root is a source of face pain in some cases, it almost certainly is not in all cases.

4. Adam presents references which he believes support a cervicogenic model for face pain, and a treatment regime which is less invasive than MVD or Rhizotomy. As both a scientific and tactical concern, I urge him to revisit the applicability of all of these references. Some are to case reports which seem to me to provide "indications" of something happening, but which cannot usefully be generalized without further research. Other references strike me as parenthetical observations that may have been taken out of the original context and might not represent the considered opinions of their authors. If qualified people are to read his article and lend their support to further deep research, then Adam needs to carefully avoid the appearance of having cherry-picked data out of context to support a personal or professional agenda. The data -- not his interpretations -- must make the case if there is one.

5. Thus my takeaway from the article is that it needs a major rewrite and reorientation. Both by title and by internal argument, the article presently has the appearance of a poke in the eye with a sharp stick for a lot of practicing neurosurgeons. In my view, that isn't constructive. I would also encourage him to find the authors of all of the references he has used, and send each of them a short inquiry to this effect: "I read your article thus-and-such in the Journal of XYZ. I would like to use your work in a paper which proposes a need to explore basic science and diagnostic practice for cervicogenic models of chronic neuropathic face pain. I solicit your professional opinion on whether the following quotation from your work is a fair interpretation or application."

6. I also believe the article -- and other participants in this forum -- might benefit from a few examples drawn from Adam's experience as an osteopathic practitioner. IF he has seen significant improvement in the facial pain of people he has treated with the methods in which he is trained, then that experience can be reported here without the implication that anybody is trolling for patients. Just as Ron Blair illustrates, one of the great values of a patient-to-patient forum like Living With TN is the ability to share personal experience and observations, and to validate those observations against the experience of others. The same principle suggests that there may be benefit to other practitioners, in extracting some of his patient case reports for a shorter professional paper in an authoritative medical journal. That would be a different and more limited treatise than we've been discussing. But it might be at least an incremental contribution with lasting consequence.

This completes my two Red cents as a non-patient who reads a lot of medical literature and has published a few things under peer review. I encourage others to add their insights or concerns. As Mod Support points out, we can differ in our interpretations without being nasty or punishing in our discussions. Since he (she?) has voiced a degree of disagreement with Adam's interpretation and my own, it may also be productive for Mod Support to identify themselves by professional affiliation and to reveal the reasons for their disagreement.

Regards, Red

30

Two things. I researched your points. As well having been a part of this group since it started, I know the feelings that happen when non-tn patients coming in forcing perspectives. As you can see by the responses TN patients they have treated their cervical spine, some now worse off than when they started. Coming on, and attacking the FPA,, well your right is not going to win over a lot of people. Many TN patients, in desperation have tried all sorts of things, and all they ended up with is a empty bank account. I stand by what I said. You are showing a strong bias. There many causes of TN. I had bone pressing on my nerve, caused by a congenital birth defect. What you are saying had nothing to do with my TN. I do not question your heart to help, but you might want to reconsider your approach.

aiculsamoth said:

Saraiderin,

I would like to apologise to you for my abhorrent behaviour, but it is difficult to apologise to people I don't know for things that they don't understand.

saraiderin said:


For many of us who do have TN, when non patients come here pushing treatments, it can cause a lot of hard feelings, and sorry, but your bias truly is showing.
aiculsamoth said:

Fair point Richard/ Red,

Although I have mentioned it, I am a UK based Osteopath, though I am unsure what bearing it has, since I don't/ have not/ will not advocate a treatment modality. I am not a TN patient but do not expend my time for fun, I have no other interest other than helping maybe just one TN patient. Being a member of this forum brings no financial benefit, just adds to stress and tension in my life, which I am willing to take on board. Sure I've tried to make my point several times, and will continue to do so, I may have been more successful before but...for misplaced attitudes. I originally didn't want to mention my medical status because I didn't want to be seen to be adding any bias. As a NON TN patient, I feel is a bonus for obvious reasons.

31

LOL Red, You never going to get that information from me. But keep trying.

Actually Adams article is well written, but more importantly it contains something a lot of the article here did not. This thing called footnotes and bibliography. Most every statement of fact has supporting evidence. What I missed was a discussion of chiropractic manipulation, yet we seem to be turning it into a debate point. That's a whole different bag. British Osteopathy does not generally do atlas adjustments. A USA chiroquacker will even though for the most part their association(s) discourage it.

When you get more involved in anatomy you see a much broader range of possibilities. SPG for example works because of the "neck" (so to speak) this is probably one of the most exciting developments in very long time. There are fewer and Fewer MVD's being done in academic centers partly because of the POOR success rates, and partly because of other options.

My disagreement with the two of you is pretty simple. I believe MVD should only be done after EVERY other possibility is exhausted and only when there is clear evidence (MRI) and never for Type 2. Its a very simple surgery (as brain surgery goes) but none the less. Drilling holes in ones skull is a really big deal. You two have allowed yourselves to be pushed into "corners" I would hope neither of you want to be in. Its sounds like either-or. Its not. Roughly 10% (according to Johns Hopkins I believe its closer to 5) have a cervogenic cause. Interestingly enough roughly 10% of TN patients progress to surgery. That means you two are leaving out 80% of sufferers.

The value of these kinds of discussions is immense (BTW the FPM is far more receptive to Adams article than by some here) But keep in mind 80% of our patients fall into NEITHER category and are struggling to get through the day. So while these academic discussions have value, none of it is as great as peers sharing with each other how to live with this thing

32

First of all I just want to say that it is great to see this finally being discussed in detail on this site! Thank you Red for reviewing Adam's paper and letting us hear your opinions.

I am going to put in my two cents as I have gained relief from treatment with my neck and my facial pain does seem to be connected to neck issues. BUT...in true TN fashion it is not cut and dry and this is by no means appropriate treatment for all sufferers OR does it offer a miracle cure.

I have TN in my family. I am the fourth woman with it. I first had TN when I was 29 for one year. It went away for seven years and came back way worse. A year later it went bilateral. I have bilateral ATN in all three branches. I also have symptoms of ON, GN and GPN.

As a bit of background I have had generalized left sided pain for about five years--mainly neck, shoulder, arm, hand and sometimes hip and leg. Two years ago with one of my many MRI/MRAs it was found that I have a disc bulge at C5-C6. This was only casually mentioned to me during a follow up appointment with my GP and no course of action was discussed at that time. Other then that all tests have been returned normal time and time again. I have seen a top neurosurgeon for MVD in Toronto Canada with no help offered and have been under the care of the only facial pain specialist neurologist I have heard of in Ontario for a year. My ATN comes and goes, moves around and is different every day. I also had left sided migraines and cluster headache symptoms every single day for about four months straight last winter.

I tripped and fell last March and injured my neck. My Dr suggested physio as I also have the disc bulge so I started attending weekly appointments with acupuncture as well. I committed to these appointments for three months. She only did gentle hands on manipulation of my cervical spine and we took things very slowly. The first couple of appointments actually brought on pain but there was a light bulb moment when she was touching a part of my neck and I could feel it in my face!

So after three appointments with her my daily migraines disappeared! Gone and never came back! Amazing. These flare ups were unbelievably painful. And as my neck got better I started noticing a decrease in symptoms on my face. I have been tapering my medication since May and finally took the last pill two weeks ago. I am not pain free but things are very, very manageable. I have since returned to physio for a few appointments here and there. My neck issue does seem to somewhat chronic and as pain starts creeping into the usual places (including my face) I have regained relief with physio and acupuncture. I cannot lift things as this immediately brings pain and I have to be very careful with computer time and "C" posture, which is difficult as I have a desk job. Coincidence or not, ATN started coming on two years ago shortly after I started this job.

The part that is not cut and dry--two things stand out to me. 1. I am the fourth woman in my family with TN and 2. I have had lengthy remission before so I cannot say with 100% certainty that it is the therapy that has helped and not a natural remission.

But this is the first time in two years that I am not on medication. The most frustrating part of the medical system for me is the medication. Oh the medication. It is the only thing that Drs seem to be able to do with us atypical TNers! I have a medicine cabinet full of every pill out there for pain, inflammation, migraines and TN. There is so much that is unknown about facial pain and I believe that there are many causes that need to be investigated. And I am not under the impression that everyone with TN has neck issues or will have their pain diminished by cervical therapy. I spend a lot of time on forums and speak with a lot of people and there are people being helped by this. I think that it is important to discuss and raise awareness about ALL possible causes so that sufferers can make informed decisions for themselves and seek out appropriate treatment. 99% of everything I know about TN has come from talking with other people about it. I have learnt zip from my Drs. It is paramount that we become our own best advocates and our own specialists.

The fact that 40% of the "normal" population have compression of the trigeminal nerve but do NOT have TN absolutely blows my mind! Taken from here by none other then our famous rock star surgeon Dr. Linskey:

http://www.facingfacialpain.org/index.php?option=com_content&vi...

Certainly compression plays a role as MVD does offer relief to so many but it is not the only piece of the puzzle. I participated in a study through the University of Toronto with Zeev Seltzer. He is working with a team of DRs through the Facial Pain Research Foundation studying the genetic predispositions of TN. I found the statistics in these two videos to be very eye opening:

http://facepainhelp.com/video/facial-pain-research-foundation-disco...

http://facepainhelp.com/video/discovering-and-finding-the-genes-tha...

And here is a video with Dr.Comey at the FPA Florida Regional Conference discussing NUCCA and Upper Cervical:

http://http://fpa-support.org/florida-regional-conference-dr-comey/

33

After seeing a friend have 6 strokes after her right vertebral artery was torn due to a chiropractic adjustment of her neck, I suggest people proceed cautiously. She is one of three people I know who got TN due to chiropractic neck adjustments.

34

Moth is not suggesting that all people with TN need to have their neck adjusted. I actually am afraid of chiropractors and will not go to one. What is being discussed needs to be taken with a grain of salt. It is not suggested that this is the cause of all TN. Even Moth said it is worth it if he can help one person. I feel the same way! We need to discuss all possibilities and while this may not be relevant for you it is to me and to some other people that are being helped by cervical treatment. I think it is important to have open discussions on this site. How else are we supposed to learn? And while Moth is not a TN patient and does have a vested interest in this subject shouldn't we welcome specialists and people with medical knowledge to share with us? There is a difference between spreading education and trying to make a quick buck from vulnerable people.

Everything in the body is connected. I wish that Drs would look at things a bit more holistically. Just as I am floored by the fact that our teeth are treated as an entirely separate entity from the rest of our bodies, I am also floored that Drs do not see that our heads are connected to our necks!

saraiderin said:

Two things. I researched your points. As well having been a part of this group since it started, I know the feelings that happen when non-tn patients coming in forcing perspectives. As you can see by the responses TN patients they have treated their cervical spine, some now worse off than when they started. Coming on, and attacking the FPA,, well your right is not going to win over a lot of people. Many TN patients, in desperation have tried all sorts of things, and all they ended up with is a empty bank account. I stand by what I said. You are showing a strong bias. There many causes of TN. I had bone pressing on my nerve, caused by a congenital birth defect. What you are saying had nothing to do with my TN. I do not question your heart to help, but you might want to reconsider your approach.

aiculsamoth said:

Saraiderin,

I would like to apologise to you for my abhorrent behaviour, but it is difficult to apologise to people I don't know for things that they don't understand.

saraiderin said:


For many of us who do have TN, when non patients come here pushing treatments, it can cause a lot of hard feelings, and sorry, but your bias truly is showing.
aiculsamoth said:

Fair point Richard/ Red,

Although I have mentioned it, I am a UK based Osteopath, though I am unsure what bearing it has, since I don't/ have not/ will not advocate a treatment modality. I am not a TN patient but do not expend my time for fun, I have no other interest other than helping maybe just one TN patient. Being a member of this forum brings no financial benefit, just adds to stress and tension in my life, which I am willing to take on board. Sure I've tried to make my point several times, and will continue to do so, I may have been more successful before but...for misplaced attitudes. I originally didn't want to mention my medical status because I didn't want to be seen to be adding any bias. As a NON TN patient, I feel is a bonus for obvious reasons.

35

Doctors are often biased, based on their medical training. As a 21 year TN patient, I have seen this a lot between neurologists, and neurosurgeons. I know Red is the husband of a TN patient. I am all for none TN professionals wanting to help. What got me is the comment is the FPA barking up the wrong tree. It really did strike me as being argumentative I started in the group as member number 8. Took time off then came back under a new name. I have seen what does happen when people come in pushing their perspective like it is the only way. Bulging disks are something totally different, but I firmly believe pinched nerves will cause radiating pain, so I do believe it can be a cause of facial pain. I find it interesting though that someone posted they had their bulging cervical disks treated, and their facial pain got worse. As well if Moth has treated all those patients, why have they posted one study. I would think with that experience they would have a lot of proof.

I know of 3 people who got ATN after having their necks adjusted. TN is a disease for which there is no real cause. People will have theories.

sidebar here: AVM is a brain blood vessel issue, and can be a cause of TN. It is a very dangerous issue. It was a ruptured AVM that gave the founder of Livingwithtn TN, after caused it him to have a massive stroke.

ModSupport said:

Keep in mind all are not patients but have an interest - Aiculsamoth who has treated hundreds if not thousands and researches in the area, Red who is not patient but is married to one, (neither of of whom I necessarily agree with) there is at least one retired surgeon who questions AVM as the gold standard of treatment and on goes the list. All of who care and have something to offer. It it fits wear it, if not toss it. Of course folks have a bias. Show me one that doesn't.
saraiderin said:


For many of us who do have TN, when non patients come here pushing treatments, it can cause a lot of hard feelings, and sorry, but your bias truly is showing.

36

AVM? Did you mean MVD?

saraiderin said:

Doctors are often biased, based on their medical training. As a 21 year TN patient, I have seen this a lot between neurologists, and neurosurgeons. I know Red is the husband of a TN patient. I am all for none TN professionals wanting to help. What got me is the comment is the FPA barking up the wrong tree. It really did strike me as being argumentative I started in the group as member number 8. Took time off then came back under a new name. I have seen what does happen when people come in pushing their perspective like it is the only way. Bulging disks are something totally different, but I firmly believe pinched nerves will cause radiating pain, so I do believe it can be a cause of facial pain. I find it interesting though that someone posted they had their bulging cervical disks treated, and their facial pain got worse. As well if Moth has treated all those patients, why have they posted one study. I would think with that experience they would have a lot of proof.

I know of 3 people who got ATN after having their necks adjusted. TN is a disease for which there is no real cause. People will have theories.

sidebar here: AVM is a brain blood vessel issue, and can be a cause of TN. It is a very dangerous issue. It was a ruptured AVM that gave the founder of Livingwithtn TN, after caused it him to have a massive stroke.

ModSupport said:

Keep in mind all are not patients but have an interest - Aiculsamoth who has treated hundreds if not thousands and researches in the area, Red who is not patient but is married to one, (neither of of whom I necessarily agree with) there is at least one retired surgeon who questions AVM as the gold standard of treatment and on goes the list. All of who care and have something to offer. It it fits wear it, if not toss it. Of course folks have a bias. Show me one that doesn't.
saraiderin said:


For many of us who do have TN, when non patients come here pushing treatments, it can cause a lot of hard feelings, and sorry, but your bias truly is showing.

37

I did indeed. Thanks for the catch.

I respect what you are saying Sara. You might actually be surprised at how many physicians and allied professionals are on these boards as PATIENTS and moderators themselves. They rarely if ever will identify themselves or list their "qualifications," and certainly NEVER identify themselves in experts. They understand the concept of peer to peer. Its also why we ask those identifying themselves as "professionals" with professional designations to drop it. It IS intimidating, and pretty meaningless. I've rarely seen it help, but often seen it used as a club.

Of course there is professional bias. neurologists medicate, Surgeons cut, Chiropractors manipulate, PTs PT and on goes the list. Its what they know. BUT there is even MORE bias from patients. If something didn't work for them, its crap. If it did its wonderful. I'm an old academic. I can talk about most of these subject for hours. It doesn't mean I should.

Incidentally I have to agree with genome research being funded by the FPA being in the wrong direction but not for the same reasons. Keep in mind the FPA expanded its mission recognizing their old name put too many people in a box so they changed it.

Incidentally I have TN, but its pretty far down the list.....

BUT don't get me started on bulging discs. Was the big money for neuro surgeons until MVD and Chiari surgery came along.

38

Thank you for your time and input, it obviously was time consuming. However I can't help but be some what disappointed in that it, your response seems to focus on my writing ability, rather than the content. I had hoped for comment on the individual points which are mentioned in the article, and discussion/ comment section. I am sorry but I haven't the time, in the short term, to comment on your response in full. If you feel you have individual questions to put to myself then I will find the time to respond, but your response does seem a bit full on in it's entirity, but I am around for the next couple of hours.
What I might add is I wrote this article (not paper) for a public audience, namely the members on here, and although it is not easy reading, I never intended to submit this article to scientific journals, which I believe I stated to you privately. Had I intended, it would have read somewhat differently.
One question, unless pushed, is my qualifications, I already to my regret mentioned it on the forum in response to your question. I feel it of little relevance,as in the article on the whole is a literature examination search, so I add nothing new, some comment/ discussion, and anyone could have put the article together. My whole mention on physical therapy was a sentence, and my article conclusion mentioned MVC, not excluding it. The article was/ is meant for patients to question their treatment providers who ever they may be.

As for any professional gain, there are therapists up and down the country EU, US who will be treating TN, and I would say with some success, but they realise it is not worth their time and effort, to take it any further. I have and it will not benefit me either financially or professionally.I have spent considerable time in doing so, if I was trolling for patients, I would not be expending my time in the hope of a city of maybe 350,000 I might gain circa a couple of patients. On the note of patient numbers in my practice and I have plenty (google my number and you might get an appointment tommorow if I'm feeling accomadating, it is unlikely, short of cancellations, unless you are an existing patient, Friday night is pub and relax night ( and on that note Mod, we, our business, are known to act in the patients interest,not over treat, take you back to the cliff edge and as far from it, that your lifestyle dictates without further problem, maybe " I'll leave the ball in your court, if you need us come in sooner rather than later you might be out of here in one treatment) I believe osteopaths on the whole do not follow a business model often favoured by US therapists.
In summation, the article is meant for TN patients to question their treatment providers, not offer a treatment solution, which certain folk have assumed. I believe the medical profession should be looking at the neck as a differential diagnosis, including radiologic assesment. Would you as a patient want a cervical neuroma/ AVM and other, over looked if you had TN?
While I understand it to a point, anyone reading the article in full, might conclude, the patient that is, " I want the full trigeminal complex assesed before I might follow MVD procedure". Any questions anyone wants to ask I am willing to help answer/clarify by email, or here.



Richard A. "Red" Lawhern said:

I promised Part 4 of my response to the article on a cervicogenic model for facial pain. There are two dimensions in this part. First, what might I (or a face pain patient) take away from moths research, and second, how might he choose to make his points more effectively and with greater credibility to the scientific community which must eventually be engaged if his work is to have a positive impact on practice standards.

My takeaway (partly from the article and partly from nearly 20 years of reading the medical literature as a technically trained layman trying to help patients understand what is there):

1. As Ron Blair notes above, there is no one-size fits all answer to either causes or management of chronic neuropathic facial pain. There is ample evidence that more than one neurological process is probably involved, particularly in the distinction between Type I and Type II TN. The character and patterns of pain in these two diagnoses are substantially different, and the types of meds most effective in the two diagnoses are different (anti-seizure meds versus TCA meds). There are also cases that do not exactly fit either symptom profile. Nerve damage during dental surgery or root canal almost certainly plays a role in Type II TN for substantial numbers of people. And many cases of face pain first present within days of a whiplash injury in automobile accidents. Whether the face pain is generated in the C1-C2 region of the nerve root or further up-stream in displacement of the nerve by mechanical stretching of the brain stem is not clear to me. The ambiguity needs to be acknowledged.

2. There is also ample evidence that microvascular compression may not be a full explanation for "the cause" even of Type I TN. But MVD surgery at present is the most consistently reliable and long lasting procedure for long-term pain relief in Type I patients who do not respond well to medication. Literally tens of thousands of people get years of relief from MVD. Probably the second most successful procedure is RF Rhizotomy (partial nerve section). However, the latter has the disadvantage of being a destructive procedure. Both have limited effectiveness against Type 2 TN pain. Both procedures wear off over time in at least half of the patients who receive them. And there is risk in either procedure for making pain immediately worse in a minority of patients.

3. There is limited observational data to suggest that upper cervical manipulation may help some patients some of the time. Ron's report above seems to be one of the unsuccessful cases. The TN Association has hosted presentations by chiropractors in its US National conferences. And members here may search the archives for mention of chiropractors and outcomes from chiropractic treatment. Chiropractic therapy may not be the same as osteopathic therapy, but I believe there are some elements in common. Moth can add nuance to my impression if he chooses. My personal observation is that the trend in chiropractic outcomes is that fewer than half of those who use a chiropractor are successful in getting sustained pain reduction. This is, however, a personal impression, not a researched statistic. In any event, my takeaway from these observations is that IF the trigeminal nerve root is a source of face pain in some cases, it almost certainly is not in all cases.

4. Moth presents references which he believes support a cervicogenic model for face pain, and a treatment regime which is less invasive than MVD or Rhizotomy. As both a scientific and tactical concern, I urge him to revisit the applicability of all of these references. Some are to case reports which seem to me to provide "indications" of something happening, but which cannot usefully be generalized without further research. Other references strike me as parenthetical observations that may have been taken out of the original context and might not represent the considered opinions of their authors. If qualified people are to read his article and lend their support to further deep research, then Moth needs to carefully avoid the appearance of having cherry-picked data out of context to support a personal or professional agenda. The data -- not his interpretations -- must make the case if there is one.

5. Thus my takeaway from the article is that it needs a major rewrite and reorientation. Both by title and by internal argument, the article presently has the appearance of a poke in the eye with a sharp stick for a lot of practicing neurosurgeons. In my view, that isn't constructive. I would also encourage him to find the authors of all of the references he has used, and send each of them a short inquiry to this effect: "I read your article thus-and-such in the Journal of XYZ. I would like to use your work in a paper which proposes a need to explore basic science and diagnostic practice for cervicogenic models of chronic neuropathic face pain. I solicit your professional opinion on whether the following quotation from your work is a fair interpretation or application."

6. I also believe the article -- and other participants in this forum -- might benefit from a few examples drawn from Moth experience as an osteopathic practitioner. IF he has seen significant improvement in the facial pain of people he has treated with the methods in which he is trained, then that experience can be reported here without the implication that anybody is trolling for patients. Just as Ron Blair illustrates, one of the great values of a patient-to-patient forum like Living With TN is the ability to share personal experience and observations, and to validate those observations against the experience of others. The same principle suggests that there may be benefit to other practitioners, in extracting some of his patient case reports for a shorter professional paper in an authoritative medical journal. That would be a different and more limited treatise than we've been discussing. But it might be at least an incremental contribution with lasting consequence.

This completes my two Red cents as a non-patient who reads a lot of medical literature and has published a few things under peer review. I encourage others to add their insights or concerns. As Mod Support points out, we can differ in our interpretations without being nasty or punishing in our discussions. Since he (she?) has voiced a degree of disagreement with Adam's interpretation and my own, it may also be productive for Mod Support to identify themselves by professional affiliation and to reveal the reasons for their disagreement.

Regards, Red

39

Saraiderin,

You are probably confused by mods comment on patient numbers regarding myself, I have treated thousands of patients during my time, but no they are not all tn patients. In twenty years I have treated maybe twelve patients with TN, which I feel is probably about the norm for a practitioner and incidence for the number of patients I have seen. I do take exception to the opinion chiros/ osteopaths only manipulate in the case of therapy including TN, necks as in adjustments/ snap crack and pop. Personally I have never manipulated the atlas in any patient, despite knowing how to. This in the main is due to the fact C1 often has no dorsal root, which is why the pretty picture of dermatomes (the distinct areas often portrayed in TN) do not include a sensory distribution for C1. Physical therapists have a wide range of treatment options which they tailor to a particular patients health/ complaint. Your friend numbers which include adverse events I would like to think you might tell me you have a huge circle of friends, as in HUGE, the numbers you speak of are disturbing and as such wonder whether someone in your local area is well, dangerous/ incompetent. The title of the post was meant to be inflammatory, although perhaps unfairly to a point.



saraiderin said:

Doctors are often biased, based on their medical training. As a 21 year TN patient, I have seen this a lot between neurologists, and neurosurgeons. I know Red is the husband of a TN patient. I am all for none TN professionals wanting to help. What got me is the comment is the FPA barking up the wrong tree. It really did strike me as being argumentative I started in the group as member number 8. Took time off then came back under a new name. I have seen what does happen when people come in pushing their perspective like it is the only way. Bulging disks are something totally different, but I firmly believe pinched nerves will cause radiating pain, so I do believe it can be a cause of facial pain. I find it interesting though that someone posted they had their bulging cervical disks treated, and their facial pain got worse. As well if Moth has treated all those patients, why have they posted one study. I would think with that experience they would have a lot of proof.

I know of 3 people who got ATN after having their necks adjusted. TN is a disease for which there is no real cause. People will have theories.

sidebar here: AVM is a brain blood vessel issue, and can be a cause of TN. It is a very dangerous issue. It was a ruptured AVM that gave the founder of Livingwithtn TN, after caused it him to have a massive stroke.

ModSupport said:

Keep in mind all are not patients but have an interest - Aiculsamoth who has treated hundreds if not thousands and researches in the area, Red who is not patient but is married to one, (neither of of whom I necessarily agree with) there is at least one retired surgeon who questions AVM as the gold standard of treatment and on goes the list. All of who care and have something to offer. It it fits wear it, if not toss it. Of course folks have a bias. Show me one that doesn't.
saraiderin said:


For many of us who do have TN, when non patients come here pushing treatments, it can cause a lot of hard feelings, and sorry, but your bias truly is showing.

40

I believe you have not come close in answering point a), almost seems you stopped reading at page circa 10.

Richard A. "Red" Lawhern said:

(Moth) and participants in this thread.

So far, I haven't heard anything from the Ben's Friends Advisory Board to restrict my response here, so I will make a start to comment on the paper "To MVD or not to MVD? Trigeminal Neuralgia – A cervicogenic model." The paper has been featured in the TN Basics tab above.

As Adam is aware, I am critical of the paper for several reasons. That said, I invite anyone in the thread to consider and comment upon four central issues which I shall try to pose as fairly as I can and with courtesy to all who participate here.

(1) What are the central points or conclusions of the paper?

(2) How strong does the medical evidence for these points seem?

(3) What background in training and experience does the author bring to the paper -- thus how authoritative should we regard its conclusions to be?

(4) What can we as readers take away for our own constructive use?

These questions may occupy more space than a single posting permits. If so, I will try to continue the thread if I run out of space.

FIRST: My reading of the paper suggests a few central points:

(a) There is no end-all medical explanation or model for chronic neuropathic facial pain. Classification systems are still provisional. Ultimate mechanisms have not yet been reliably confirmed, and there is still much to learn. [On this point, I believe we agree].

(b) There is some medical evidence for models of trigeminal pain other than microvascular decompression. One of those models may involve damage or compression of "trigeminal nerve roots" in the region of C-1-C2 in the cervical spine. [Adam presents his understanding of this evidence, on which I will comment below].

(c) Currently accepted medical practice does not assess for nerve damage in the cervical region when Trigeminal Neuralgia or facial neuropathy is suspected. Nor is significant current medical research being done to explore that possibility. I believe it may be fair to suggest that Moth feels frustration over these realities. [I would agree that this is the present status quo, and I hope I have appropriately summarized it].

(d) The author believes that many patients are inadequately treated or actively harmed by MVD and that a greater reliance should be placed on the physiotherapy techniques of osteopathic medicine with a de-emphasis of invasive surgical procedures. [On this point, I disagree in principle, and will comment at greater length below. Likewise, especially but not exclusively on this one, Adam, please correct my reading if I over-state or distort your conclusions.]

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

SECOND:

How strong does the medical evidence seem to be for the central points of the paper?

Adam clearly believes that there are grounds for reconsidering the microvascular compression model in Type I TN and perhaps for re-interpreting outcomes data on microvascular decompression procedures, even when they work. I have some difficulty in responding to this position meaningfully. Although I am reasonably well read on the existing medical literature of face pain, I am quite definitely NOT a neuroscientist. I don't have the depth of education and experimental exposure that I believe are needed to assess the credibility and plausibility of the many references that Adam has brought together in the paper. And I don't have six months to devote to an exclusive deep-dive research effort to acquire such a background.

What I do know is that there are standards of science which apply to determining how well a theoretical model actually describes medical reality. There is strong evidence in randomized double-blind trials versus weak evidence in individual case studies. Weakest of all are anecdotes published on web sites that have an economic interest in gaining patient acceptance of their products. All of us have seen that self-interest operating in the Net, though not as a rule on Living With TN.

Adam has declared that he has no personal economic interest in the outcome of the discussion here, and I accept his declaration. But he does have a professional interest in the outcome, given that others in his specialty would benefit if his conclusions were widely accepted. That is no less true of neurosurgeons or neurologists or chiropractors or anyone else who chooses to comment on issues of chronic face pain, and it is not of itself disqualifying.

But the potential for investigator bias must lead us to great care in extracting conclusions from published work, including the article we are discussing here. Medical practitioners cannot generalize from individual case reports, and there are a few such reports among Adam's references. Nor should we accept uncritically statements that begin with "we would expect", as applied to a conclusion or proposal of medical research. We need to ask "who would expect, and is there a body of evidence that supports this expectation?" These are questions I have suggested to Adam privately, and I believe they are germane.

It is vital that we understand that there is much we simply do not know -- and which as medical laymen (lay persons? the term isn't exclusively male), we perhaps cannot know without the advice of people more deeply grounded in neuroscience. In the meantime, I believe we have a strong ethical requirement not to fall prey to over-generalization -- even if we see evidence that may take us part of the way toward a different point of view on treatment of chronic face pain than that now regarded as "best practice".

As H.L. Mencken once reminded us, "for every problem there is at least one solution which is simple, plausible... and wrong." My central concern in Adam's article, is that I believe he may have fallen into this trap when he posed his conclusions in the way he did. I do not accept an either/or hypothesis for models of face pain. I don't believe we have to choose between vascular compression or cervical compression as "causes" for chronic facial pain. To me -- and founded on nearly 20 years of reading the medical literature -- both hypotheses are credible proposals and BOTH might apply in different patients. They are not mutually exclusive. But to represent them as so seriously weakens the paper as a proposal for engaging the interest and concern of researchers and research institutions.

I will continue my thoughts on the third and fourth issues I've just identified, in a further posting. It may be tomorrow before I get back to complete this commentary.

Regards,

Red