Mod support,
I don't want to sound entirely ignorant here, this is a nod to your academic status, which is unstated but obvious, but where do you get your 5%, 10%, 80% figures. I have looked at John Hopkins and are none the wiser, are you basing it on cervicogenic headache? if so I don't see the relevance, but am willing to stand corrected. No website concerned with TN as far as I know including JH, mention cervicogenic neuralgia in their TN pages. If patients don't present with neck pain are they going to include it in their differential, I think not,they do not, or for that matter if they don't have symptoms of occipital neuralgia it won't be included, hence in addition to mentioned article I believe cervicogenic TN is alot more common than your stated figure. Your figures I would like to know, many thanks
ModSupport said:
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
For whatever it's worth, I was also wondering if Mod Support could provide a specific link to source materials. I also wonder where he learned that the number of MVDs is declining. I've been told that statistics on the number of MVDs haven't been collected in the US since year 2000.
I would also comment parenthetically that I was on the Board at the TN Association when they decided to broaden their mission to address face pain in general rather than must TN. The primary reasons for that decision were to broaden their appeal to potential fund donors. Unfortunately, the desired happy outcome never really materialized. Salaried staffing at TNA headquarters in Florida had to be scaled back when donations collapsed in 2008 with the US financial crisis. They still haven't recovered from the debacle, and their support group infrastructure appears to be withering on the vine as a result. The Facial Pain Foundation appears to be doing somewhat better, but its precise relationship to the patient-centered services of the new Facial Pain Association has never been particularly clear to me.
Some folk have stated the lack of a response in said article with regards to chiropractic/ osteopathic treatment, Whilst I have stated I don't in the article recommend osteopathy over any other treatment and nor was it my intention, I feel everyone in the medical profession has something to offer, as a starting point cervical nerve blocks- an interesting article,
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3311831/
Should people have an interest in how this practitioner would assess and treat a TN patient, I am willing to write an article/ piece, though might take some time to make it Bomb proof against detractors. On the understanding I AM NOT advocating it as a treatment modality. Don't take this the wrong way, but I am sure/ know there are easier patients to treat, e.g. you have tennis elbow, we'll do our best (as always). I have enough patients, for my non Porche payment lifestle.
This is NOT true. There are number of conditions that need eliminated or confirmed. A few come to this foggy old brain. There are more: Paroxysmal Hemicrania (often the result of cervical pressure) Sunct syndrome, Sjaastad Syndrome, ION, ON, GPN, etc.
Lets not forget that there are 12 pairs of cranial nerves that feed in the pharengeal arches in some measure. (including the 5th (trigeminal) The most fascinating is the accessory nerve or facial nerve 11 that is both a cranial nerve AND a spinal nerve and huge cause of facial pain. IF that nerve is irritated it sets of all manner of trouble (including TN) That nerve also provides motor innervation of the neck.
I have to admit I don't much about research other than several NEW procedures being carried out by interventional radiologists based on these bundles and roots. (and a few by anesthesiologists)
Its not good to speak in absolutes, there are none. Better docs go further and keep their patients out of boxes. They rarely are found in operating rooms
Richard A. "Red" Lawhern said:
..........
(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].
I'll have dig a bit on 5% -10%number for the source. It is lecture notes From Lee Dellon at Johns. Its was not headache but rather involvement of the cervical plexus. As you know The C2 and C3 nerves have dermatomes that cover the occiput, the neck, and the lateral jaw. AS you may Know Dr. Dellon also owns Sensory Management Services which markets the Pressure Specified Sensory Device (which he invented)
The other figures are pretty easy. Roughly 10% of patients can not be managed medically if as many 10% are "cervogenic, there are 80% of patients being exclude by you twos discussion
Red as far as numbers go try here : (its ICP 6145, 61458, 61460, 64716,64722) Relating it specifically to ICD9 350.1 is a bit more difficult. Keep in mind the number of NEW procedures in place that have replaced the Jannetta procedure going back to 1967 such as gamma knife and newer nerve blocks/rhizotomy that are far less invasive. As you can imagine sorting it out will drive one nuts. Prolly why my half time Doc has 3 full time assistants filling out reporting materials.
https://www.pqrspro.com/cmsmeasures/2015/patient-centered_surgical_...
aiculsamoth said
Mod support,
I don't want to sound entirely ignorant here, this is a nod to your academic status, which is unstated but obvious, but where do you get your 5%, 10%, 80% figures. I have looked at John Hopkins and are none the wiser, are you basing it on cervicogenic headache? if so I don't see the relevance, but am willing to stand corrected. No website concerned with TN as far as I know including JH, mention cervicogenic neuralgia in their TN pages. If patients don't present with neck pain are they going to include it in their differential, I think not,they do not, or for that matter if they don't have symptoms of occipital neuralgia it won't be included, hence in addition to mentioned article I believe cervicogenic TN is alot more common than your stated figure. Your figures I would like to know, many thanks
ModSupport said:
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
To be honest modsupport, I haven't the foggiest what you are talking about, C2, C3 what is the relevance? As to the numbers you gave Red, unless I missed part of the conversation, which is more than possible, what is the meaning of all those numbers?
MS -- I wasn't asserting the statement as true. I was summarizing what I read from Adam's article. I am well aware that physicians assess for more than just TN when they work up face pain patients. That said, how many of the syndromes you identify actually express the same symptoms as TN-1 or TN-2 in the face, and would prompt an evaluation of the cervical spine?
ON certainly doesn't present that way -- it's "occipital" because pain is experienced in the rear quadrant of the head. Sunct isn't TN and a physician would be alerted to the possibility of sunct by the tearing that accompanies it. Paroxysmal Hemicrania has features in common with TN in the median branch of the nerve, but may also be accompanied by tearing and nasal congestion on one side (see http://www.ninds.nih.gov/disorders/paroxysmal_hemicrania/paroxysmal...) So would a neurologist routinely assess the cervical spine for these medical conditions?
ModSupport said:
This is NOT true. There are number of conditions that need eliminated or confirmed. A few come to this foggy old brain. There are more: Paroxysmal Hemicrania (often the result of cervical pressure) Sunct syndrome, Sjaastad Syndrome, ION, ON, GPN, etc.
Lets not forget that there are 12 pairs of cranial nerves that feed in the pharengeal arches in some measure. (including the 5th (trigeminal) The most fascinating is the accessory nerve or facial nerve 11 that is both a cranial nerve AND a spinal nerve and huge cause of facial pain. IF that nerve is irritated it sets of all manner of trouble (including TN) That nerve also provides motor innervation of the neck.
I have to admit I don't much about research other than several NEW procedures being carried out by interventional radiologists based on these bundles and roots. (and a few by anesthesiologists)
Its not good to speak in absolutes, there are none. Better docs go further and keep their patients out of boxes. They rarely are found in operating rooms
Richard A. "Red" Lawhern said:
..........
(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].
MS: I also don't know where you get the figure of 10%. We see a much higher percent of people who have difficulty with medical management here at LWTN and on related Facebook groups. There is obviously a self-selection bias in that statistic, but I still don't know where you get the figure.
Likewise, the number of gamma knife procedures appears to be dropping in comparison to MVD. See "Trends in surgical treatment for trigeminal neuralgia in the United States of America from 1988 to 2008" Journal of Clinical Neuroscience, 20 (2013) 1538–1545
ModSupport said:
I'll have dig a bit on 5% -10% number for the source. It is lecture notes From Lee Dellon at Johns. Its was not headache but rather involvement of the cervical plexus. As you know The C2 and C3 nerves have dermatomes that cover the occiput, the neck, and the lateral jaw. AS you may Know Dr. Dellon also owns Sensory Management Services which markets the Pressure Specified Sensory Device (which he invented)
The other figures are pretty easy. Roughly 10% of patients can not be managed medically if as many 10% are "cervogenic, there are 80% of patients being exclude by you twos discussion
Red as far as numbers go try here : (its ICP 6145, 61458, 61460, 64716,64722) Relating it specifically to ICD9 350.1 is a bit more difficult. Keep in mind the number of NEW procedures in place that have replaced the Jannetta procedure going back to 1967 such as gamma knife and newer nerve blocks/rhizotomy that are far less invasive. As you can imagine sorting it out will drive one nuts. Prolly why my half time Doc has 3 full time assistants filling out reporting materials.
https://www.pqrspro.com/cmsmeasures/2015/patient-centered_surgical_...
There really is no surgical procedure called MVD. Those numbers represent the actual procedures done all under the umbrella term MVD. Every surgical procedure done in the US is reported, but is done so by one of those codes. Obviously there are many. So if one is determining the number of MVDs done they have to total every one of the "procedure codes" and to be totally accurate because nerve decompression is done for many reasons other than TN you have to then find those that are done based on the Broad diagnostic code for TN (there are about 15 subcodes give or take) Red is prolly correct that no one has done so since 2000. I have an opinion why, but its not important.
The c2 c3 thing, I thought was clear apparently not and that's my fault. The C2 and C3 nerves have dermatomes that cover the occiput, the neck, and the lateral jaw. In short what that means is that there are a lot of facial nerves that are spinal nerves. In short facial pain can be caused by these cervical nerves (especially the "toothache from hell")
aiculsamoth said:
To be honest modsupport, I haven't the foggiest what you are talking about, C2, C3 what is the relevance? As to the numbers you gave Red, unless I missed part of the conversation, which is more than possible, what is the meaning of all those numbers?
I understand what you are saying Red, but one of the things that is so frustrating about a face pain patient is the anatomy. Spinal nerves are easy to track. You know right where they are where they exit. Cranial nerves on the other hand are developed very early. They all root initially from the pharengeal arches. which is one of the first structures that forms during fetal development. The problem then becomes their exit point after development. Trochlear nerve exits through superior orbital fissure, With the Trigeminal nerve V1=enters through superior orbital fissure; V2=enters by foramen rotundum; V3=enters by foramen ovale and the Abducens nerve. exits through superior orbital fissure. All are overlayed by 11 which is both types of nerve but primarily is a spinal nerve. This is 50% of the cranial nerves coming in going in one place. There are other foramens the same. The problem is compounded because you can't find two individuals who have their foramen in the same place. This development is as unique as each individual.
Each one of syndromes I mentioned could be the cause of "TN" symptoms. and each could have a "cervical cause" Yes there are unique differences between each that after diagnoses get separated out. Unfortunately most patients don't read the book. Its pretty uncommon to have a clear cut case of "anything." Type 1with MRI evidence comes the closest....
As far management numbers go here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002644/#!po=64.2857 You have to do a wee bit of math and to be totally accurate a bit of algebra. They break down medication into 2 areas so add the success rates of the two, then they break down other pre surgical interventions. I didn't do the algebra (percent of a percent stuff) so actually the number I came up with was a bit higher than 90 I rounded down
As you noted Red people don't come to a support site for more than a few days after being diagnosed (or are searching for a diagnoses) unless they are outliers. If everything is going okay, they don't really need a lot of support. A fair number of others get on the right track and we never hear from them again. Those we serve are generally the outliers who have complicated cases, and things out of the norm. That's why we allow and Encourage a broad range of discussion topics.
Richard A. "Red" Lawhern said:
MS -- I wasn't asserting the statement as true. I was summarizing what I read from Adam's article. I am well aware that physicians assess for more than just TN when they work up face pain patients. That said, how many of the syndromes you identify actually express the same symptoms as TN-1 or TN-2 in the face, and would prompt an evaluation of the cervical spine?
ON certainly doesn't present that way -- it's "occipital" because pain is experienced in the rear quadrant of the head. Sunct isn't TN and a physician would be alerted to the possibility of sunct by the tearing that accompanies it. Paroxysmal Hemicrania has features in common with TN in the median branch of the nerve, but may also be accompanied by tearing and nasal congestion on one side (see http://www.ninds.nih.gov/disorders/paroxysmal_hemicrania/paroxysmal...) So would a neurologist routinely assess the cervical spine for these medical conditions?
ModSupport said:
This is NOT true. There are number of conditions that need eliminated or confirmed. A few come to this foggy old brain. There are more: Paroxysmal Hemicrania (often the result of cervical pressure) Sunct syndrome, Sjaastad Syndrome, ION, ON, GPN, etc.
Lets not forget that there are 12 pairs of cranial nerves that feed in the pharengeal arches in some measure. (including the 5th (trigeminal) The most fascinating is the accessory nerve or facial nerve 11 that is both a cranial nerve AND a spinal nerve and huge cause of facial pain. IF that nerve is irritated it sets of all manner of trouble (including TN) That nerve also provides motor innervation of the neck.
I
If you want to make your article more "bomb proof" in the scientific community, here are some helpful resources:
http://www.ccace.ed.ac.uk/research/software-resources/systematic-reviews-and-meta-analyses
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3380258/
An important point that Red is trying to mention, which I am in total agreement with, is that you need to be more critical about the studies that you are using as evidence. For example, the study that you cite here is of very poor quality. It is a chart review, with no investigator blinding, no placebo control, and with a very small sample size. Something like this might make me dig deeper and try to find if anyone has done a more vigorous trial, but nothing more. Critiquing your own sources is not seen to weaken your argument in scientific writing - it actually serves to remind the reader that you are aware of the limitations of your research. Otherwise you can be sure that they will do it for you and dismiss your whole article as cherry picking the data.
There actually isn't much high quality evidence for trigeminal neuralgia at all, which is unfortunate. It is a rare condition so I suspect there isn't much funding. It's also hard to get a sufficient patient population to conduct a study. Ideally you would conduct a multi-centre, randomized, double blinded, and placebo controlled trial.
aiculsamoth said:
Some folk have stated the lack of a response in said article with regards to chiropractic/ osteopathic treatment, Whilst I have stated I don't in the article recommend osteopathy over any other treatment and nor was it my intention, I feel everyone in the medical profession has something to offer, as a starting point cervical nerve blocks- an interesting article,
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3311831/
Should people have an interest in how this practitioner would assess and treat a TN patient, I am willing to write an article/ piece, though might take some time to make it Bomb proof against detractors. On the understanding I AM NOT advocating it as a treatment modality. Don't take this the wrong way, but I am sure/ know there are easier patients to treat, e.g. you have tennis elbow, we'll do our best (as always). I have enough patients, for my non Porche payment lifestle.
I don't have much knowledge of what you are discussing but could the structure of this anatomy create a familial cause of TN?
ModSupport said:
I understand what you are saying Red, but one of the things that is so frustrating about a face pain patient is the anatomy. Spinal nerves are easy to track. You know right where they are where they exit. Cranial nerves on the other hand are developed very early. They all root initially from the pharengeal arches. which is one of the first structures that forms during fetal development. The problem then becomes their exit point after development. Trochlear nerve exits through superior orbital fissure, With the Trigeminal nerve V1=enters through superior orbital fissure; V2=enters by foramen rotundum; V3=enters by foramen ovale and the Abducens nerve. exits through superior orbital fissure. All are overlayed by 11 which is both types of nerve but primarily is a spinal nerve. This is 50% of the cranial nerves coming in going in one place. There are other foramens the same. The problem is compounded because you can't find two individuals who have their foramen in the same place. This development is as unique as each individual.
Each one of syndromes I mentioned could be the cause of "TN" symptoms. and each could have a "cervical cause" Yes there are unique differences between each that after diagnoses get separated out. Unfortunately most patients don't read the book. Its pretty uncommon to have a clear cut case of "anything." Type 1with MRI evidence comes the closest....
As far management numbers go here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002644/#!po=64.2857 You have to do a wee bit of math and to be totally accurate a bit of algebra. They break down medication into 2 areas so add the success rates of the two, then they break down other pre surgical interventions. I didn't do the algebra (percent of a percent stuff) so actually the number I came up with was a bit higher than 90 I rounded down
As you noted Red people don't come to a support site for more than a few days after being diagnosed (or are searching for a diagnoses) unless they are outliers. If everything is going okay, they don't really need a lot of support. A fair number of others get on the right track and we never hear from them again. Those we serve are generally the outliers who have complicated cases, and things out of the norm. That's why we allow and Encourage a broad range of discussion topics. FWIW that's exactly what is happening. Posts are up, new threads are up, and membership is way up. 30 days is a trend and could have less meaning in 90 days.
Richard A. "Red" Lawhern said:
MS -- I wasn't asserting the statement as true. I was summarizing what I read from Adam's article. I am well aware that physicians assess for more than just TN when they work up face pain patients. That said, how many of the syndromes you identify actually express the same symptoms as TN-1 or TN-2 in the face, and would prompt an evaluation of the cervical spine?
ON certainly doesn't present that way -- it's "occipital" because pain is experienced in the rear quadrant of the head. Sunct isn't TN and a physician would be alerted to the possibility of sunct by the tearing that accompanies it. Paroxysmal Hemicrania has features in common with TN in the median branch of the nerve, but may also be accompanied by tearing and nasal congestion on one side (see http://www.ninds.nih.gov/disorders/paroxysmal_hemicrania/paroxysmal...) So would a neurologist routinely assess the cervical spine for these medical conditions?
ModSupport said:
This is NOT true. There are number of conditions that need eliminated or confirmed. A few come to this foggy old brain. There are more: Paroxysmal Hemicrania (often the result of cervical pressure) Sunct syndrome, Sjaastad Syndrome, ION, ON, GPN, etc.
Lets not forget that there are 12 pairs of cranial nerves that feed in the pharengeal arches in some measure. (including the 5th (trigeminal) The most fascinating is the accessory nerve or facial nerve 11 that is both a cranial nerve AND a spinal nerve and huge cause of facial pain. IF that nerve is irritated it sets of all manner of trouble (including TN) That nerve also provides motor innervation of the neck.
I
Jane, the US TN Association has reported some years back that the incidence rates for TN tend to be higher among female relatives than in the general population. So some process of genetics or family physical resemblance seems plausible in the higher numbers.
Regards, Red
That's correct. If I was 30 years younger I think I'd look at embryology as a study field. There is a lot of answers there. I don't see the present genome research getting there as quickly. There simply is too much coincidence. I'd love to see mapping of the cranial nerves in female relatives with TN.
Red, you might want to read this on SUNCT and lacrimation and some of the difficulty in differential diagnoses:
http://www.ncbi.nlm.nih.gov/pubmed/9533603
Yes, of the people that I have talked with that have multiple family members with TN it is more often on the maternal side. I know this is a rare occurance but I have actually come across quite a few other members here and on Facebook groups that have one or more female relatives that also have TN.
Richard A. "Red" Lawhern said:
Jane, the US TN Association has reported some years back that the incidence rates for TN tend to be higher among female relatives than in the general population. So some process of genetics or family physical resemblance seems plausible in the higher numbers.
Regards, Red
Thank you for replying. This is my thinking on familial TN as well. I did participate in Zeev Seltzer's study but only with a detailed mapping of my family and neurological disorders that have occurred.
I have come across quite a few other members that have TN in their families...usually all females of course. Another thing that I run across in talking to these people is that MS, migraines and cluster headaches also run in their families. I do not know what this implies but, for obvious reasons, it is of great interest to me. In my family four women on the maternal side have TN, one has MS, three have migraines and two have cluster.
Another thing that I have noticed in people with familial TN is that it is far more common for it to be bilateral. My mom and I both have bilateral pain.
ModSupport said:
That's correct. If I was 30 years younger I think I'd look at embryology as a study field. There is a lot of answers there. I don't see the present genome research getting there as quickly. There simply is too much coincidence. I'd love to see mapping of the cranial nerves in female relatives with TN.
I hesitate to point out the study was done at the Orofacial Pain Clinic, Department of Oral Diagnosis, Oral Medicine and Oral Radiology, The Hebrew University, Hadassah School of Dental Medicine, Jerusalem, Israel. The incidence would be what they stated. There is not a lot of Northern Europeans living in Israel which of course we know to be the demographic where TN most frequently occurs. What makes this study particularly interesting to me is the fact that because of the Matrilineality in Judaism, to be "Jewish" one follows the mother.
Richard A. "Red" Lawhern said:
.....I believe I've seen the article before. I am reading it again. But one thing in it is immediately glaring: National large scale demographics studies in Belgium and the UK in 2007-2010 fix the incidence rates for TN at between 12 and 21 new cases per year per hundred thousand, not 4.9......
Regards, Red
justjane37,
Not entirely on topic but neither far removed, hormones and female hormones in particular play a part in modulation of the trigeminal complex and in particular the caudal spinal trigeminal nucleus so I would propose even with a genetic predisposition these could play a part in an already excited trigeminal complex, due to a genetic cause. This (hormones) is recognised I believe in many head pain complaints.
Oh, it's so fun to be woman! Yes and I will tell you that I have flare ups every single month like clock work with my cycle.
aiculsamoth said:
justjane37,
Not entirely on topic but neither far removed, hormones and female hormones in particular play a part in modulation of the trigeminal complex and in particular the caudal spinal trigeminal nucleus so I would propose even with a genetic predisposition these could play a part in an already excited trigeminal complex, due to a genetic cause. This (hormones) is recognised I believe in many head pain complaints.