Toothache, suggest you view the video by Ken Casey that is featured on our main page. It's very good for discussing current understandings of how neuropathic pain is mediated in the brain. Ken feels that peripheral nerve stimulators are probably the "wave of the future" for managing chronic face pain. But practice standards in PNS systems are still in their infancy, and the medical evidence for effectiveness is still fragmentary. Microsurgical nerve repair is pretty hit and miss, and very few surgeons do it.
Hi Red,
Peripheral nerve stimulators are a mode of pain control therapy. I have viewed the video by Dr. Casey. What I’m hoping for is an actual cure, and microsurgical nerve repair could be a potential avenue if medical research manages that breakthrough. I would like to return to being as I once was - no pain, no meds, and definitely no wires running through my face. It’s perhaps not a realistic hope at the moment but one can dream.
Wow, that was a lot of discussion! I suppose that as far as deciding on a surgical procedure, it would be good to know but the truth is, we ALL know our symptoms inside and out regardless of the name we put on it.
It took me over 30 years to get a diagnosis! I don't care what they call it. I was finally diagnosed by my current pain specialist after I explained a dental procedure I had when I was 19 years old. The dentist told me then that he must have hit a nerve because my face was numb and stayed that way and I still have areas of numbness. I then followed up with yet another neurologist, my fifth at that point, who did some simple tests that clearly showed that the feeling on one side of my face was greatly diminished. He also diagnosed it as TN. The most interesting thing to me is that neither of these doctors were aware of the terms TN1 and TN2. I had already researched myself to death and figured out that it was TN and feel strongly that it is due to the wisdom tooth that was extracted.
Without medication, I would be in constant pain at this point. I read somewhere that Lyrica was good for one type and Topamax was better for the other. For me, I need a combination of the two. That made me wonder if I have both. I don't know and quite frankly, I don't care as long as I can get from one day to the next.
I have shoulder and neck pain but I had whiplash in a car accident when I was a teenage. But I really think that most of it comes from tensing up from the pain. I also have arthritis now as well.
All of this to say that first we need our doctors to be better educated in these matters. As I said, it took five neurologists to get a diagnosis and he doesn't know that there are different types!
I am fortunate to live near Hopkins and while it will take a long time before my appointment, I'm sure that I will get some more clarity there.
Less functional than I'd like to be but still kicking,
As no more than a footnote, I'm not surprised that some neurologists have never heard of the terms "TN-1" and "TN-2". The classification system is something that Dr. Kim Burchiel proposed in the mid 1990s in a journal article. I used the terms and backed them up with parallel definitions (classic and atypical trigeminal neuralgia) in the TN Fact Sheet fpr US NINDS. I don't believe the definitions were ever formally adopted by the International Association for the Study of Pain, and they don't appear in standard international disease categorizations such as the ICD-10. So even professionals have a hard time agreeing on nomenclature and definitions.
I've heard of both Lyrica and Topamax being tried in both TN-1 and TN-2 or in mixtures of the two. As noted before, "your results may vary" is the rule. Likewise, it might be of interest to realize that several neurosurgeons have told me they've seen many cases where one or both types of TN have first emerged after whiplash injury.
In response,to " As for ATN originating in neck problems, I just don't see the evidence for that. Co-morbidity yes. But not a cause-and-effect relationship". In order to may be of some assistance, knowing you are short on time I can start the ball rolling, on the evidence front, may be me you me etc. bit like building one of those pictures kids do when folding the paper after drawing a head and passing it on to the next kid. This first one is as good an opener as any, a nice intro.
Sada Teresa Ovalle et al , describe four cases of trigeminal neuralgia due to pathology of the cervical spine, including cervical arthritis and cervical stenosis, that were successfully treated with upper cervical spine nerve blocks, concluding that cervical pathology should be considered as a differential diagnosis in trigeminal neuralgia.
Sada Teresa Ovalle et al. Probable relationship between trigeminal neuralgia and cervical spine pathology. Case Reports. Rev. Soc. Esp. Dolor v.15 n.5 Narón (La Coruña) jun.-jul. 2008.
Richard A. "Red" Lawhern said:
My reading from multiple sources is that "atypical trigeminal neuralgia" and "trigeminal neuropathic pain" are at least closely aligned and probably pretty much the same thing. And searching pub med as I did reveals at least the association between neuropathic pain issues and atypical trigeminal neuralgia. I candidly don't have time to read 300+ abstracts to find one article that supports that claim explicitly with notes on the mechanisms involved.
The single most evident cause of classic TN (90-minute volleys of electric-shock stabs separated by periods of quiet) is vascular compression of the nerve in the region close to its emergence from the brain stem. MVD to separate nerve from blood vessels is 900% effective in these cases. But there are also cases where this pain pattern isn't clearly associated with vascular compression or trauma per se. Those cases are called "idiopathic".
With ATN or "Trigeminal Neuropathic Pain", the range of potential causes seems wider, and the character of the pain itself is less consistent. We know that constant achy burning, boring pain can emerge in the face after dental injury, sinus surgery, problems with brain tumor or aneurism or AVM, Eagle Syndrome, TMJ disorder,Shingles, and probably a few that don't directly come to mind at this instant. The "diagnostic profile" tends to be imprecise and often ambiguous. Sometimes there is no discrete event or trauma at all. But the pain itself is most similar in character to peripheral neuropathy pain.
As for ATN originating in neck problems, I just don't see the evidence for that. Co-morbidity yes. But not a cause-and-effect relationship.
Given that Trauma e.g.whiplash causes cervical dysfunction, and the fact that 25% of TN patients suffered trauma in the six months prior to developing their symptoms coupled with the fact that 25%+ patients find neck movement aggravates/ alleviates their symptoms, Cervical dysfunction is likely to account for a very large proportion of tn and yet is ignored, go figure.
Moth, do you happen to remember a published source for the 25% figure? Though neurosurgeons have told me that a good many cases of TN first present after a whiplash injury, I've never heard a specific statistic quoted. And cervical dysfunction isn't the only mechanism that may be involved.
Whiplash extends the neck and spinal column, pulling on the brain stem. This pulling may disturb relationships between the cranial nerves and nearby blood vessels and muscle, potentially creating or increasing vascular compressions. Nobody knows for sure what the balance of effects may be. What is quite clear, however, is that cervical spine adjustment by chiropractors has no consistent or reliable record of effectiveness. It appears to help some people, some of the time. But chiropractors know no more than laymen about the precise mechanisms involved.
Moth, case reports have limited usefulness. They can alert practitioners to medical issues or therapy choices that might be effective in some patients, or which bear further investigation. But they rarely generalize. So I'd still have to say that I don't see the evidence that TN is caused by cervical dysfunction, in any large number of cases -- or by implication that it can be reliably treated by spinal adjustment, despite claims of chiropractors (an issue which I realize you have not directly introduced, but still one that continues to plague public discussions of treatments for TN). Cervical nerve blocks may help some TN patients, just as Sphenopalatine Ganglion blocks help some TN patients. But I have considerable reservations about how many stand to get reliable pain relief by these methods.
Red, I agree with your comment, case reports have limited use, but as they are available, wouldn't excluding the neck in the differential diagnosis of TN, be negligent ?
Given that TN occurs and reoccurs in the absence of vascular compression, and a patient's blood work is normal, pathology been excluded, by elimination it would appear the only other area within the trigeminal complex that can be responsible is the neck, the head having been excluded.
Chiropractic though having helped some, I believe chiefly treats the bony elements of the neck.
Actually, a lot of nerves are smaller than that can be detected via normal imaging methods. Just because nerve dysfunction is not visible on MRI does not mean that it doesn't occur.
For example, lesions in the smaller branches of the trigeminal nerve are invisible on imaging but they can lead to the types of continuous neuropathies that are described in atypical forms of TN.
I agree with Red that a case report involving 4 patients hardly provides any evidence at all. I'm also skeptical about chiropractic treatment in general. Some of their principles are a bit fishy.
aiculsamoth said:
Red, I agree with your comment, case reports have limited use, but as they are available, wouldn't excluding the neck in the differential diagnosis of TN, be negligent ?
Given that TN occurs and reoccurs in the absence of vascular compression, and a patient's blood work is normal, by elimination it would appear the only other area within the trigeminal complex that can be responsible is the neck, the head having been excluded.
Chiropractic though having helped some, I believe chiefly treats the bony elements of the neck.
Tootheache, I realise that small nerves and vessels can not be seen on MRI. and that lesions of the small trigeminal nerves of the face can give continuous neuropathic pain, this type of TN would though fall into the TN category of neuropathic pain.
The link given, although hardly easy reading, says atypical TN is an overlap of Typical TN and Neuropathic pain, but states that in the experience of neurosurgeons, which isn't referenced in the summary, typical (TN type 1) is a compression at the root entry zone (REZ) whilst atypical (type 2) is lesions of the trigeminal nerve root distal to the REZ. We're still talking a 3mm, give or take, structure, not fine nerves of the face. When I said TN occurs and reoccurs in the absence of vascular compression, I meant none found on MRI in addition to none found during MVD procedure in the same patient.
Besides the link you refer to, was written some twenty years ago, by Kim J. Burchiel, and since his classification of tn, basically saying atypical is a continuation of Type 1, he has moved away from the theory/ hypothesis of type1 being at the REZ, and type2 distal to it.
I agree, 5 patients is hardly evidence, it was meant as a start, afterall when we know the cervical spine and the trigeminal complex is connected why are hypotheses formed to explain the unknown ie occurs reoccurs, before the neck is considered. Nature doesn't extend that nucleus to the cervical spine for fun, nature favours the shortest neural pathway for efficiency, so if it had no reason for it being there, it wouldn't be.
Ok,the first time I jumped into this discussion, I think I was a bit too hard on the subject, so I would like to extend my apologies if anyone felt that way. I had written one up but it doesn't seem to have posted.
My whiplash injury occurred when I was 16 years old. I was in a neck brace for about 8 weeks and I was never told to get any type of physical therapy. After that, I had severe neck pain and terrible migraines started. I tried everything, including going to a chiropractor. In honesty, that made things worse. The dental injury occurred when I was 19 and the lower right side of my face was left numb immediately. The oral surgeon even had me come back once a month or something to check and see if I was regaining any feeling. After about six months, he just told me that I may or may not regain the feeling in the lower part of my face, which included my lips (only on the right side), especially the lower one and some of my bottom teeth. I know that sounds strange, but yes, I had several teeth that felt numb. And then a few years passed and the pain, horrific pain, started! It would come in waves that would last six to eight weeks. As time has gone on, the waves became longer and the periods in between became shorter. I have regained some of the feeling but not all of it. I have one tooth in particular that will hurt horribly, usually a predictor of oncoming full-blown pain. However, I went to the dentist one time and insisted that he do a root canal only to find out that the tooth had already had one and had been capped. I now carry an X-Ray of my mouth so that I will know if I have a problem with a tooth or with TN. It is crazy! Oh, I have had one of the neck injections mentioned, three times, but it didn't help at all. Now I get Rhizotomy's in my neck, which do help somewhat.
Cathy in MD, if treatment of an area makes things worse, I would say said area is probably responsible for the symptoms, squeeze a zit it leaves it inflamed, painful. Though I wouldn't suggest it is always a good idea to continue treatment, the zit inflammation eventually settles. Not the best analogy.
Red, I had hoped that you having an interest in facial pain and research for some twenty years would have played a part in the area of neck related trigeminal neuralgia, rather than being dismissive at the first presentation of "evidence". Bearing in mind the trigeminal complex extends to the cervical spine, obviously for some reason. I thought you might be interested in examining the evidence and researching it for yourself given the impact of TN on individuals, their relationships and financial implications on all involved. In twenty years have you, examined the literature/ anatomy of the neck and trigeminal neuralgia? or even the more recent evidence. I recognise your invaluable support in helping the members of this website, and you should be applauded for it. In the UK you would probably be nominated for an OBE or similar, and rightfully so. Which brings me to, with your knowledge and research skills, ignoring the neck issue is failing your audience, your skills and your aims. I am trying to help, as opposed to levelling criticism. Please examine the available evidence.
Piovesan EJ et al, demonstrated evidence of convergence in humans by injecting sterile water over the greater occipital nerve( a branch of the second cervical nerve, C2), on one side of the neck causing trigeminally distributed pain (1). I reckon on having drawn the shoulders, before passing the picture to you, maybe you could draw the chest.
(1)Referred pain after painful stimulation of the greater occipital nerve in humans: evidence of convergence of cervical afferences on trigeminal nuclei. Cephalalgia. 2001 Mar;21(2):107-9.
Moth, as an old saying has it, I calls 'em as I sees 'em.
I've been knocking around the literature of chronic face pain for nearly 20 years. I am NOT "ignoring" the possibility of cervical injury or extension becoming a source of TN pain in some patients, some of the time. But I see no evidence in my own reading that cervical injury operates in any large proportion of patients apart from whiplash as a precipitating event in microvascular compression of the 5th cranial nerve in regions close to its emergence from the brain stem. I also don't see evidence that nerve blocks in this region of anatomy offer reliable management of face pain. A few case studies don't do it for me.
Within the limits of a very busy schedule, I will make an effort to talk with some people whose professional opinions I trust, and to do some further reading on relationships between cervical injury and face pain. In the meantime, I would suggest that you refrain from accusing me of "failing the audience" here because I don't fully share your enthusiasm. I do what I can.
I visited the neurologist and then a stomatologist (or dental surgeon)
The neurologist found nothing wrong with me, MRI fiesta was done (all good) thank God, and checked my face for trigger zones, he told me he has been a neurologist for 34 years and has never seen an ATN patient, he has seen a few TN just so that I know that while ATN exists, it is EXTREMELY rare and a large percentage of cases is actually from TN patients morphing into ATN as the nerve degenerates, but ATN occurring out of the blue without a blow to the face, diabetes, ms or any other apparent cause, simply not likely!
so chances are my issue is something else.... he then referred me to a neuro-dentist
the dentist checked me and told me that while I don't have TMJ, I do have quite tight muscles on my face, he noticed that I clench my teeth and he said I have pain on all the typical patterns of patients with tight facial muscles.
He started to press around my cheek and found a spot that makes my tongue burn and my upper front teeth... he said it's not nerve but mere myofascial tightness.
He sent me to physical therapy (he told me he sees tons of people with this issue)
I asked him about ATN and he told me ATN is neurological and I wouldn't even be able to stand him touching my face.
So now I am taking ibuprofen, paracetamol and it's helping!
I asked both about the neck/face connection, and both said that the muscles in the neck and face are one system, and the neck influences the face. Also posture influences facial and muscle tension in general.
Red, I feel an apology is more than overdue after reading "failing the audience" in my previous post, I'm somewhat horrified I wrote it, it is perhaps too easy to hit the reply button without reading what you have written. In the circumstances, I feel your reply "I don't fully share your enthusiasm" was more than tempered, my apologies, not considering your efforts for the community of livingwithtn. Commenting on your post however, there is no evidence "cervical injury operates in any large proportion of patients apart from whiplash as a precipitating event in microvascular compression of the 5th cranial nerve in regions close to its emergence from the brain stem", there is a just we "think", trauma leads to microvascular compression, no evidence??This is what I find annoying, to say the least, I offer references and then someone offers a spurious comment stating whiplash causes microvascular compression.
In addition you on more than one occasion mention large, who cares if it is one instance or 2000, if I was suffering TN I would hope my neuro would consider the one instance that cervical pathology/ dysfunction might be a cause of my failed life, Hence why I would want it to form part of my neuro's differential diagnosis. By requiring the LARGE number you would seem to be hedging.
I also wanted to add that the neurologist told me that he has seen cases of people with severe pain and no one can explain how they got them.
Then the pain is resolved when the person actually corrects their posture or gets the muscles to relax
apparently muscles are the scourge of humanity and its only now that medicine is coming to terms with the fact how muscles can cause painful chronic idiopathic conditions (such as back pain, chronic neck pain and yes face pain). Plenty of chronic pain sufferers have suddenly found relief with sports massage, stretching, retraining their bodies in order to take tension of off certain muscles.
Because of computers, neck and facial pain have become epidemic
Moth: Let me try to amplify on previous comments, to lend more precision to the discussion. My impression on the issue of cervical dysfunction has been strongly influenced by input from a skilled neurosurgeon who has treated a lot of patients. He suggested to me that when whiplash occurs, the brain stem gets pulled sharply and nerves branching from the brain stem "may" get moved in the process, leading to new or altered vascular compressions. The 'may" is simply an acknowledgment that although the connection is plausible, it isn't proven or reliably consistent in literature, other than as a speculation. We're operating in a zone of ambiguity. Thus it is premature to expect that standards of care will be revised to require a full exploration of possible cervical dysfunction as a "cause" of cases of TN which first present after whiplash.
One other footnote may also be worth thinking about. Vascular compressions in the cranial nerves are found by post-mortem studies in about half of the population in the US. But only a tiny fraction of people ever present with TN or neuropathic pain. Likewise, a relatively tiny proportion of people who get a whiplash injury will present with TN or facial neuropathic pain.
When we deal with events that are relatively rare (as chronic facial pain is, regardless of how horrid it can be when it develops), the great bulk of the medical profession still operates on the principle "when you hear hoof beats, look for horses, not zebras." Thus while cervical dysfunction might be looked at after a patient fails conventional drug treatments for TN, it's unlikely that this potential source or "driver" on face pain will be looked at routinely on the first round of evaluations, particularly for typical TN. To incorporate imaging and cervical nerve blocks into an initial round of evaluations adds patient expense and physician time, for what may be perceived as relatively unlikely benefit.
For issues of the neck to become a routine concern in chronic face pain, a connection must first be established between a significant number of cases where cervical injury (perhaps from whiplash) is established as a causation of diagnosed face pain -- either typical TN or trigeminal neuropathic pain. So far that connection hasn't been reliably established, as far as I've read. I will do some further reading in the 300+ references I mentioned earlier in this thread, and post a follow-up if I find anything strongly suggestive.
Regards, Red
aiculsamoth said:
Red, I feel an apology is more than overdue after reading "failing the audience" in my previous post, I'm somewhat horrified I wrote it, it is perhaps too easy to hit the reply button without reading what you have written. In the circumstances, I feel your reply "I don't fully share your enthusiasm" was more than tempered, my apologies, not considering your efforts for the community of livingwithtn. Commenting on your post however, there is no evidence "cervical injury operates in any large proportion of patients apart from whiplash as a precipitating event in microvascular compression of the 5th cranial nerve in regions close to its emergence from the brain stem", there is a just we "think", trauma leads to microvascular compression, no evidence??This is what I find annoying, to say the least, I offer references and then someone offers a spurious comment stating whiplash causes microvascular compression.
In addition you on more than one occasion mention large, who cares if it is one instance or 2000, if I was suffering TN I would hope my neuro would consider the one instance that cervical pathology/ dysfunction might be a cause of my failed life, Hence why I would want it to form part of my neuro's differential diagnosis. By requiring the LARGE number you would seem to be hedging.