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Living With Facial Pain

Is FPA TN research barking up the wrong tree?

#1

Evening,
I would like to think Fpa research foundation, read this forum, as it is an extention of fpa tn. The fpa research foundation gives grants to various scientific bodies for research into genes, genomes and stem cells but ignores to date the obvious (my opinion), the neck/ cervical spine as a cause when it clearly does and has the ability to cause trigeminal neuralgia. It is as though we have come this far, since 1100 AD when it was first described, something as so simple as the neck as a cause can't possibly be the case. I don't claim all TN, but as a cause, which it is, how comparitively cheap is research into this compared with other solutions which have less of a claim as an aetiology, dirt cheap. Neuros dismiss the neck as a cause, radiologists don't consider the neck on imaging, who is to say sufferers don't have cervical pathology, no one has looked at it, in the case of the typical patient. This is a travesty and maybe confining a patient to suffering and medication for the rest of their lives, when simple procedures could be the answer. Neck related trigeminal neuralgia is common, from experience, and as such cervicogenic TN deserves more consideration, ignoring it which seems to be the trend benefits no one. Is it too simple an answer? I suggest it would and is the cure for numerous patients, without the fancy genetic cloak, which makes little sense in the concept of proper health.


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#2

Cervicogenic headache (and facial pain) is a real diagnosis. If you look at a point of care reference such as uptodate, it is listed as part of the differential diagnosis for craniofacial pain. I believe it is confirmed by doing certain nerve blocks. A lot of doctors don’t bother to do a full differential diagnosis to rule things out. They jump right into treatment.

#3

Toothache,

Thank you for the reference in uptodate, I shall take a look, although I see it involves joining, hopefully free. If listed as a differential diagnosis, why does every site with regards to TN not mention it, I haven't come across one yet to my knowledge be it US or UK. . This is to the detriment of TN patients

Toothache said:

Cervicogenic headache (and facial pain) is a real diagnosis. If you look at a point of care reference such as uptodate, it is listed as part of the differential diagnosis for craniofacial pain. I believe it is confirmed by doing certain nerve blocks. A lot of doctors don't bother to do a full differential diagnosis to rule things out. They jump right into treatment.
#4

They don’t mention it because it is a completely different diagnosis with a different set of treatment (physiotherapy and anaesthetic blockage of C2/C3). That’s like asking why a site about gallstones doesn’t have info about appendicitis. Although they may have similar symptoms, they are separate conditions.




aiculsamoth said:

Toothache,

Thank you for the reference in uptodate, I shall take a look, although I see it involves joining, hopefully free. If listed as a differential diagnosis, why does every site with regards to TN not mention it, I haven’t come across one yet to my knowledge be it US or UK. . This is to the detriment of TN patients

Toothache said:

Cervicogenic headache (and facial pain) is a real diagnosis. If you look at a point of care reference such as uptodate, it is listed as part of the differential diagnosis for craniofacial pain. I believe it is confirmed by doing certain nerve blocks. A lot of doctors don’t bother to do a full differential diagnosis to rule things out. They jump right into treatment.
#5

Either your confused or myself, I really don't know what or where your direction originates. You were the one to mention Cervicogenic headache (and facial pain) in this thread. Have you a link stating Cervicogenic Headache causes facial pain? If cervicogenic headache causes pain in the face, I would like to see your source. If it is stated it does, what nerve complex is it acting on, the trigeminal complex perhaps? as in it causes trigeminal neuralgia. If not why mention and facial pain, or is this your addition? Trigeminal neuralgia is not a diagnosis but a description of signs and symptoms and as such should really be labelled a syndrome. On that note how can 'trigeminal neuralgia be a completely different diagnosis' when the cause is a hypothesis? My whole point is it is one and the same in many instances, which makes your analogy of appendicitis/ gall bladder redundant ( although if I was on a site for gallbladder problems I might like to see a mention of appendicitis as a differential diagnosis). Where are you coming from, or have I missed your point?



Toothache said:

They don't mention it because it is a completely different diagnosis with a different set of treatment (physiotherapy and anaesthetic blockage of C2/C3). That's like asking why a site about gallstones doesn't have info about appendicitis. Although they may have similar symptoms, they are separate conditions.


aiculsamoth said:

Toothache,

Thank you for the reference in uptodate, I shall take a look, although I see it involves joining, hopefully free. If listed as a differential diagnosis, why does every site with regards to TN not mention it, I haven't come across one yet to my knowledge be it US or UK. . This is to the detriment of TN patients

Toothache said:

Cervicogenic headache (and facial pain) is a real diagnosis. If you look at a point of care reference such as uptodate, it is listed as part of the differential diagnosis for craniofacial pain. I believe it is confirmed by doing certain nerve blocks. A lot of doctors don't bother to do a full differential diagnosis to rule things out. They jump right into treatment.
#6

Someone else who it seems considers trigeminal neuralgia as a result other than microvascular compression.

Dr. Allan Basbaum is professor and chairman of the Department of Anatomy at the University of California San Francisco.

"In this respect, we consider trigeminal neuralgia and other neuropathic pain conditions as manifestations of diseases of the nervous system, rather than symptoms of some other condition."

http://www.facingfacialpain.org/

#7

It's unfortunate that you don't have a subscription to uptodate. It's an excellent resource. Here's an excerpt:

"ETIOLOGY AND ANATOMYThere is evidence that headache can be caused by referred pain from the upper cervical joints [6].

The anatomic locus for cervicogenic headache is the trigeminocervical nucleus in the upper cervical spinal cord, where sensory nerve fibers in the descending tract of the trigeminal nerve (trigeminal nucleus caudalis) are believed to interact with sensory fibers from the upper cervical roots (figure 1) [8]. This functional intersection of upper cervical and trigeminal sensory pathways is thought to allow the bidirectional transmission of pain signals between the neck and the trigeminal sensory receptive fields of the face and head."

The diagnosis can be confirmed by doing nerve blocks in the cervical region. They do not recommend doing any high intensity spinal manipulation in the cervical region due to stroke risk, but gentle manipulations may be helpful.

It is considered a completely separate diagnosis from trigeminal neuralgia.


aiculsamoth said:

Either your confused or myself, I really don't know what or where your direction originates. You were the one to mention Cervicogenic headache (and facial pain) in this thread. Have you a link stating Cervicogenic Headache causes facial pain? If cervicogenic headache causes pain in the face, I would like to see your source. If it is stated it does, what nerve complex is it acting on, the trigeminal complex perhaps? as in it causes trigeminal neuralgia. If not why mention and facial pain, or is this your addition? Trigeminal neuralgia is not a diagnosis but a description of signs and symptoms and as such should really be labelled a syndrome. On that note how can 'trigeminal neuralgia be a completely different diagnosis' when the cause is a hypothesis? My whole point is it is one and the same in many instances, which makes your analogy of appendicitis/ gall bladder redundant ( although if I was on a site for gallbladder problems I might like to see a mention of appendicitis as a differential diagnosis). Where are you coming from, or have I missed your point?



Toothache said:

They don't mention it because it is a completely different diagnosis with a different set of treatment (physiotherapy and anaesthetic blockage of C2/C3). That's like asking why a site about gallstones doesn't have info about appendicitis. Although they may have similar symptoms, they are separate conditions.


aiculsamoth said:

Toothache,

Thank you for the reference in uptodate, I shall take a look, although I see it involves joining, hopefully free. If listed as a differential diagnosis, why does every site with regards to TN not mention it, I haven't come across one yet to my knowledge be it US or UK. . This is to the detriment of TN patients

Toothache said:

Cervicogenic headache (and facial pain) is a real diagnosis. If you look at a point of care reference such as uptodate, it is listed as part of the differential diagnosis for craniofacial pain. I believe it is confirmed by doing certain nerve blocks. A lot of doctors don't bother to do a full differential diagnosis to rule things out. They jump right into treatment.
#8

Touché Red. As neither are you. I would like to believe there is room in these forums for healthy debates considering ALL causes of facial pain. There has been more and more discussion regarding cervicogenic trigeminal neuralgia on this site and on other forums and groups that I belong to.

I don't mean to single you out but a healthy argument against it may be more productive then picking on people for bringing it up. Change does not happen without people that are willing to speak out against the norms and pushing the boundaries. You know about that all too well as you have worked very hard for recognition and changes in diagnoses and treatment for facial pain. I, for one, am thankful that this discussion keeps arising as my facial pain does seem to be connected to problems with my neck.

And it isn't just this topic that needs attention but also dental injury causing nerve damage. I am sickened by the amount of misinformation out there in regards to treatments and surgery.

I have been on this forum for two years now. There are a lot of people being treated for something they do not have AND there are a lot of MVDs taking place that shouldn't be happening at all. Knowledge is power. A sufferer needs to have all information and all possibilities at hand before they can decide what direction, what specialist and what treatment to try. That is the whole point of this website isn't it? To lend support, gather and share information and broaden our knowledge base about the horrific pain that we, the sufferers, endure.

Richard A. "Red" Lawhern said:

Moth, would it not be appropriate to acknowledge your professional medical credentials here? You might or might not have a point, but it seems to be one that you've tried to make several times. And you are NOT a TN patient yourself.

Regards,

#9

All we can do is keep talking about it. I have been very active on this and other forums and groups for two years now...since I started having atypical facial pain. Even six months ago this subject was not was not being discussed at all. Now I see new conversations popping up every couple of weeks. Slowly, people are being made aware and are trying treatments. Some people are being helped. That is all we can do...keep talking about it, researching it, comparing experiences.

#10

Toothache,

I shall invest in a subscription. Your last sentence "It is considered a completely separate diagnosis from trigeminal neuralgia." is my point: whilst it is considered by the medics as a separate diagnosis, it should not be, or rather, we should have a recognised stand alone diagnosis of cervicogenic trigeminal neuralgia. You state yourself the bidirectional pain pathways between the neck and face but with the exception of this site, all other sites about TN do not give the neck a mention, which is failing the patient and their carers.

Cervicogenic Trigeminal Neuralgia offers many answers to the questions, that the theory of microvascular compression as a cause doesn't or it's explanation is weak, including;

⦁ Periods of remission
⦁ Increasing incidence with age
⦁ Bilateral TN
⦁ the absence of neurological findings on examination
⦁ Many folk, have microvascular compressions but no TN
⦁ Why common surgical procedures fail
⦁ Anaesthesia Dolorosa
⦁ Why the ophthalamic branch V1 is least effected
⦁ Other cranial neuralgias occur in the same TN patient

and of more importance- Why pain and temperature are the main sensory disturbances of TN and other sensory/ motor deficit is largely absent.

Cervical nerve blocks would be of possible use in diagnosing cervicogenic trigeminal neuralgia, indeed a couple of people on these sites have had relief from cervical nerve blocks for their TN (there aren't going to be loads of folk as the medics don't consider the neck).

" Toothache said:

It's unfortunate that you don't have a subscription to uptodate. It's an excellent resource. Here's an excerpt:

"ETIOLOGY AND ANATOMYThere is evidence that headache can be caused by referred pain from the upper cervical joints [6].

The anatomic locus for cervicogenic headache is the trigeminocervical nucleus in the upper cervical spinal cord, where sensory nerve fibers in the descending tract of the trigeminal nerve (trigeminal nucleus caudalis) are believed to interact with sensory fibers from the upper cervical roots (figure 1) [8]. This functional intersection of upper cervical and trigeminal sensory pathways is thought to allow the bidirectional transmission of pain signals between the neck and the trigeminal sensory receptive fields of the face and head."

The diagnosis can be confirmed by doing nerve blocks in the cervical region. They do not recommend doing any high intensity spinal manipulation in the cervical region due to stroke risk, but gentle manipulations may be helpful.

It is considered a completely separate diagnosis from trigeminal neuralgia.


aiculsamoth said:

Either your confused or myself, I really don't know what or where your direction originates. You were the one to mention Cervicogenic headache (and facial pain) in this thread. Have you a link stating Cervicogenic Headache causes facial pain? If cervicogenic headache causes pain in the face, I would like to see your source. If it is stated it does, what nerve complex is it acting on, the trigeminal complex perhaps? as in it causes trigeminal neuralgia. If not why mention and facial pain, or is this your addition? Trigeminal neuralgia is not a diagnosis but a description of signs and symptoms and as such should really be labelled a syndrome. On that note how can 'trigeminal neuralgia be a completely different diagnosis' when the cause is a hypothesis? My whole point is it is one and the same in many instances, which makes your analogy of appendicitis/ gall bladder redundant ( although if I was on a site for gallbladder problems I might like to see a mention of appendicitis as a differential diagnosis). Where are you coming from, or have I missed your point?



Toothache said:

They don't mention it because it is a completely different diagnosis with a different set of treatment (physiotherapy and anaesthetic blockage of C2/C3). That's like asking why a site about gallstones doesn't have info about appendicitis. Although they may have similar symptoms, they are separate conditions.


aiculsamoth said:

Toothache,

Thank you for the reference in uptodate, I shall take a look, although I see it involves joining, hopefully free. If listed as a differential diagnosis, why does every site with regards to TN not mention it, I haven't come across one yet to my knowledge be it US or UK. . This is to the detriment of TN patients

Toothache said:

Cervicogenic headache (and facial pain) is a real diagnosis. If you look at a point of care reference such as uptodate, it is listed as part of the differential diagnosis for craniofacial pain. I believe it is confirmed by doing certain nerve blocks. A lot of doctors don't bother to do a full differential diagnosis to rule things out. They jump right into treatment.
#11

Well said, " clappy happy emoticon", which I couldn't find.

justjane37 said:

Touché Red. As neither are you. I would like to believe there is room in these forums for healthy debates considering ALL causes of facial pain. There has been more and more discussion regarding cervicogenic trigeminal neuralgia on this site and on other forums and groups that I belong to.

I don't mean to single you out but a healthy argument against it may be more productive then picking on people for bringing it up. Change does not happen without people that are willing to speak out against the norms and pushing the boundaries. You know about that all too well as you have worked very hard for recognition and changes in diagnoses and treatment for facial pain. I, for one, am thankful that this discussion keeps arising as my facial pain does seem to be connected to problems with my neck.

And it isn't just this topic that needs attention but also dental injury causing nerve damage. I am sickened by the amount of misinformation out there in regards to treatments and surgery.

I have been on this forum for two years now. There are a lot of people being treated for something they do not have AND there are a lot of MVDs taking place that shouldn't be happening at all. Knowledge is power. A sufferer needs to have all information and all possibilities at hand before they can decide what direction, what specialist and what treatment to try. That is the whole point of this website isn't it? To lend support, gather and share information and broaden our knowledge base about the horrific pain that we, the sufferers, endure.

Richard A. "Red" Lawhern said:

Moth, would it not be appropriate to acknowledge your professional medical credentials here? You might or might not have a point, but it seems to be one that you've tried to make several times. And you are NOT a TN patient yourself.

Regards,

#12

Jane, I have always made clear that my wife is the TN patient in our family and that I have been trained as an information miner, not a medical doctor. I've donated my time on behalf of pain patients like my wife, for the past 19 years.

#13

Yes, dentists are definitely in denial about the dental injury thing. They like to blame the patient for bruxism, TMJ disorder, vascular compressions of the trigeminal nerve, malingering - anything to escape the reality that they injured someone. I agree that these other causes of facial pain need to be further explored. Apparently neuropathic facial pain is barely taught at dental schools and dental students have no idea that cases such as mine can occur. I consider this a travesty. So many people get unnecessary dental work done that could be making things even worse.




justjane37 said:

Touché Red. As neither are you. I would like to believe there is room in these forums for healthy debates considering ALL causes of facial pain. There has been more and more discussion regarding cervicogenic trigeminal neuralgia on this site and on other forums and groups that I belong to.

I don’t mean to single you out but a healthy argument against it may be more productive then picking on people for bringing it up. Change does not happen without people that are willing to speak out against the norms and pushing the boundaries. You know about that all too well as you have worked very hard for recognition and changes in diagnoses and treatment for facial pain. I, for one, am thankful that this discussion keeps arising as my facial pain does seem to be connected to problems with my neck.

And it isn’t just this topic that needs attention but also dental injury causing nerve damage. I am sickened by the amount of misinformation out there in regards to treatments and surgery.

I have been on this forum for two years now. There are a lot of people being treated for something they do not have AND there are a lot of MVDs taking place that shouldn’t be happening at all. Knowledge is power. A sufferer needs to have all information and all possibilities at hand before they can decide what direction, what specialist and what treatment to try. That is the whole point of this website isn’t it? To lend support, gather and share information and broaden our knowledge base about the horrific pain that we, the sufferers, endure.

Richard A. “Red” Lawhern said:

Moth, would it not be appropriate to acknowledge your professional medical credentials here? You might or might not have a point, but it seems to be one that you’ve tried to make several times. And you are NOT a TN patient yourself.

Regards,

#14

Toothache, your observation seems appropriate concerning the training of dentists. I did a demographic analysis of 1900+ member profiles here, in 2012. It was posted under the Face Pain Info page at one time, but has since been taken down for review by the site advisory board. Among the records where there was enough data to analyze, I found at least 400 folks who associated the beginning of their pain with a dental procedure. In only 70 of those records did the member report having been promptly referred to a family doctor, pain specialist or neurologist. Interestingly, over 130 people diagnosed themselves when a dentist could not or chose not to do so, by comparison of their symptoms with material they found in the Internet.

Regards, Red

#15

I'm not sure as to the number ot members but it is a very large number that state dental was the cause of trigeminal neuralgia, Reading the forums you come up against just teeth cleaning as a stated cause, whilst recognising TN as a direct nerve trauma cause you would expect to see symptoms of neuropathy, parasthesia, anaesthesia etc. which is often not the case often just pain and burning, why would say teeth cleaning affect microvascular compression? Why should further dental procedures cause problems post the dental chair if microvascular compression is the cause?

A large number of patients develop TN as a result of dental procedures. Whilst dental procedures can directly damage branches of the trigeminal nerve a likely scenario is cervical trauma due to sustained/excessive contraction of the cervical muscles, backward bending of the neck and strain of its associated structures. The functional anatomical relationship of the jaw (TMJ), bite and the cervical spine is widely documented and referenced. Dental procedures do cause cervical dysfunction including cervical disc infection (34), including radiculomyelopathy due to minor trauma in the presence of cervical spondylosis and stenosis (35) . "The following risk factors are associated with the potential of bony or ligamentous compromise of the upper cervical spine.....recent head/neck/dental surgery” (36) . Dentistry can cause cervical dysfunction/ pathology. Cervical dysfunction can cause Trigeminal Neuralgia.

(34) J. A. FEIGENBAUM AND W. E. STERN. Infections of cervical disc space after dental extractions. Journal of Neurology, Neurosurgery, and Psychiatry, 1974, 37, 1361-1365

(35) Whiteson JH et al. Tetraparesis following dental extraction: case report and discussion of preventive measures for cervical spinal hyperextension injury. J Spinal Cord Med. 1997 Oct;20(4):422-5.

(36) Referenced in Manual Physical Therapy by Ken Olson page 96.

#16

Red,

As someone who has spent some twenty years researching trigeminal neuralgia and face pain what is your take on cervicogenic trigeminal neuralgia which can be found at http://www.livingwithtn.org/page/cervogenic-model, which you say you have read. You have been quiet up to now as it's content, and hence I would be interested in your opinion. Your thoughts?

#17

I believe in my case, as in many dental injury cases, the nerve was directly damaged. I was told by a different dentist that sometimes injuring the smaller branches of the nerve, which are not visible on imaging, can create neuropathic pain. They don't teach this in dental school because there is no way of avoiding injuring these branches during an extraction, so they pretend that the problem doesn't exist.

I do have symptoms of paraesthesia and allodynia along with the pain.

#18

I know Red. I am thankful for people like you and I have learnt a lot from you over the past couple of years. You were one of my first contacts that helped me when this started. I think this is an important subject and who better to learn from then someone with first hand knowledge into cervical therapy. I think all points of view are valuable and enjoy discussing the possible causes and treatments of TN.

Richard A. "Red" Lawhern said:

Jane, I have always made clear that my wife is the TN patient in our family and that I have been trained as an information miner, not a medical doctor. I've donated my time on behalf of pain patients like my wife, for the past 19 years.

#19

Moth, I am quite surprised that you would ask for my opinion as a knowledgeable reader in a public forum when I have already responded to your inquiry privately. You were quite displeased with my private answer, and intemperate in your subsequent private remarks.

I am willing to respond to your question here, but I think it will first be necessary that Mod Support or someone else associated with the new Ben's Friends Advisory Board weigh in on whether that is permitted from me. I was forced to resign as a moderator a few weeks ago, in part because members of that Board were uncomfortable with my representing myself as an expert. The administrators have since withdrawn almost all of the information that I spent a year writing for the site.

So rather than waste my time writing a detailed response that the Mod support folks will simply delete, I think I'd like assurances that I'm considered to have a right to speak from my reading and experience, first.

Regards,

#20

Richard/ Red,

Thank you for your response, you have indeed responded privately, and your response, which I feel may have been a knee jerk, in light of circumstance, is why I ask your opinion? I could be wrong and if you still hold that private response so be it, there will be no complaint from me. The reason I sent the original article to yourself was for the reason I wanted an opinion, and despite spending a long time writing it, you were one of the first I sent it to, so history ignored , not wanting to sound grandiose, I feel you should have been kind of flattered regardless of what merit you put to it. I don't mind of what assessment you put to the article, negative or otherwise. But because of your history and time with research, I ask the question, what is your opinion? I think you and I know, if it is an opinion no one in 'authority' is going to care one way or the other, as in it is a forum.

All the best, I have to go and look up "intemperate".

Either way I would welcome your response, even if it only generates discussion.

Richard A. "Red" Lawhern said:

Moth, I am quite surprised that you would ask for my opinion as a knowledgeable reader in a public forum when I have already responded to your inquiry privately. You were quite displeased with my private answer, and intemperate in your subsequent private remarks.

I am willing to respond to your question here, but I think it will first be necessary that Mod Support or someone else associated with the new Ben's Friends Advisory Board weigh in on whether that is permitted from me. I was forced to resign as a moderator a few weeks ago, in part because members of that Board were uncomfortable with my representing myself as an expert. The administrators have since withdrawn almost all of the information that I spent a year writing for the site.

So rather than waste my time writing a detailed response that the Mod support folks will simply delete, I think I'd like assurances that I'm considered to have a right to speak from my reading and experience, first.

Regards,