I've been a San Francisco Taxi Driver for many years. If a conversation with passengers indicates a medical connection, I get right to Living with TN and Trigeminal Neuralgia. Several weeks ago, a dental student attending the University of California San Francisco informed me that TN is part of his studies. He knew a lot about it (not as much as we do, however.- I brought him up to date.). He was very interested in our story. He explained to me that TN is now taught to be a possible source of mysterious tooth pain.
Several days ago, a passenger turned out to be a former Dean of the Medical School at UCSF. Also, he had been the head of Neurology at Harvard Medical School and has returned to Harvard to teach Neurology . I told him all about Living with TN. I gave him a quick rundown of our support group and our TN experiences. Of course, he was familiar with most of them but he was fascinated to hear it first hand from one of the disordered. ( I should have charged him a teaching fee!). He asked me to convey "you're doing good work" to all of us.
I asked him to help spread the word about TN (and Living with TN) throughout the medical world. He invited me to get in touch with him any time. I will write a follow up letter reminding him of Living with TN and our conversation. I'm planning a trip to Boston in May and I'll try to look him up.
Keep talking TN'ers. You just never know who might be listening
When you talk with this doctor again, you can invite him to read a paper that I hope shortly to publish here, at the TN Association and on my private website. Title is "Demographics of Neurological Face Pain at a Social Networking Website
The following is my provisional abstract:
A demographic analysis was performed on 1726 patient registration records from 55 countries, at a peer-to-peer social networking website focused on Trigeminal Neuralgia. While some demographic outcomes aligned with sources in medical literature, the patient demographic for first emergence of neurological facial pain was found to be younger than commonly asserted in medical literature, by 14 years (median age slightly under 41 years, versus "sixth decade" commonly reported). A significance test was performed to evaluate impact of age bias in this finding due to the online and self-selected nature of the patient community. Over a fifth of all patients in the demographic appear to have "Atypical" Trigeminal Neuralgia or trigeminal neuropathic pain. In at least a quarter to a third of the demographic, the patient initially mistook their facial pain for a dental problem and saw a dentist as the first medical professional consulted. In less than a quarter of cases involving a dental practitioner, was the pain promptly recognized to be non-dental in character and the patient referred to a medical doctor. In over a third of cases seen by a dental practitioner, the patient was treated for non-existent dental problems and pain did not resolve.
Keep up the educational work, Bill. I have a daughter in SF. Perhaps we can get together for coffee on my next visit.
I was talking to my pharmacist an he kept asking me question after question after question. He didn't know there was a type II and he didn't know about tricyclic antidrepressant effects on the pain. We must've talked for 20 minutes. He was very interested in what I had to say and I learned some things to . LOL
Red, those demographics were interesting. In my case there were problems found with 3 of my teeth (cavities under a crown on a molar with a prior root canal, cavities under a large filling in the back molar, and a fractured bicuspid). The TN pain started after the root canal on the bicuspid. I had really bad pain after the first part but it subsided by the time I went for the second part. It has not gone away at all since the second part. I had 3 injections into the left side of my face in a 2 week period. That is when I realized I've felt this pain before (for 2 years after my car accident and on and off ever since). I never had a name for it. The dentist told me it is trigeminal neuropathy and the neurologist said trigeminal neuralgia. All I know is I'm in pain that won't go away no matter what I do.
Kathy, the term "trigeminal neuropathy" is probably more accurate if you can associate emergence of pain with some discrete event involving facial trauma or spinal whiplash. We do see some evidence in the patient narratives, that a number of us believe that TN emerged as a consequence of dental work -- but proving that association can be very difficult for procedures other than root canal involving over-packing of the root or use of toxic fillers.
Thanks, that makes sense. It was really caused when I was in the car accident in 2005 and smashed the driver's side window out with the left side of my face. A physical therapist and an orthopedist each mentioned the term once but never again. After that the neurologist was treating me for post concussion syndrome for a couple of years because of the chronic headache and I never mentioned the face pain because I thought it was part of the same thing. I've had pains ever since but mostly background pains with some exacerbation that was short lived. It is believed that the dental work triggered a bad episode. At least that's what my dentist thinks. Wish I had known about it to tell her and my chiropractor. We all live and learn. This site is awesome. I'm learning so much in my limited capacity with this blasted medicine. (Oh, and I've had whiplash several times in my life which I believe is the cause of the fibromyalgia I have.) Bottom line is that I don't think that the dental work caused the TN, I already had it and didn't know what it was. :(
As a follow-up to this thread, I tracked down Dr Pogrel and we had a short email conversation. Though I do not have his permission to post the entire exchange, I believe it is fair to say that he was in basic agreement with the following suggestion that I made for practice standards taught to dental students:
My remark:
The issue which stands out for me in the reading I've been doing in patient narratives, is that a good many patients are flat-out misdiagnosed and treated as TMJ or abscess patients even when evidence is lacking from any X-rays conducted on them. Among those lucky enough to be told by their dentist that whatever the problem is, it isn't their teeth, a remarkable number are in essence "turned away without referral".
I should think there ought to be a standard of care that says (a) if you don't see evidence of abscess, then don't do root canal, and (b) if you don't see imaging evidence of dental disorder, then refer the patient to an oro-facial pain specialist or neurologist, not a general practitioner, for further evaluation. But don't let them go out of your office without a referral of some sort, because their problem is real.
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I am pursuing this thread further with other medical and dental professionals, with an eye toward posting correspondence to the American Dental Association Standards Committee.
Cleo, I believe I understand where you are coming from. And in somewhat the same (or at least a parallel) direction, I'm looking for venues where the results of our demographic study can be published to large numbers of dentists -- perhaps a conference proceedings or regular dental journal or meeting minutes of the ADA's practice standards committee. I realize that many patients believe they have been harmed by a dentist's incompetence or carelessness. And I'm sure some of them are right. But I am forced by considerations of fairness and legality not to apply a tar brush broadly, without exceptionally strong evidence. For those of us who are in pain, it's hard to remember that we're a relatively small group in the overall demographic of those who see a dentist. And dentists are like other doctors in being trained in the principle "when you hear hoof beats, look for horses, not zebras."
When I ran these numbers, I saw 70-odd cases out of 465, where a dentist told the patient "your pain is not dental in origin. I want you to see neurologist." We don't want to sink that minority by including them in a general broadside. We want to help them prosper and multiply. The art is in how we do that.
The largest single conundrum that we are up against in the field of dental practice is very likely that many TN cases are "buried" in a heap of inaccurate TMJ diagnoses. Dentists rather often act like the proverbial dunderheads whose premise seems to be "when the only thing you have is a hammer, everything starts looking like a nail." And TMJ practice is highly lucrative for dentists. Financial self-interest can be a very powerful source of delusional thinking and action.
There is certainly room and reason for putting some dentists out of business by prosecuting them in State medical boards. But my suspicion is that we won't get very far by generalizing to ALL dentists. A sawed off shotgun has the disadvantage of creating collateral casualties, however satisfying its results may seem in the center of the field of fire.
Red, A point I wanted to make which may or may not be true in all cases; is that the Endo that treated me ,was not aware of TN & he was an older doc. My dentist who knew about TN was in his forties. Just thought I would mention, cuz maybe they did not teach TN prior to a certain year??? Min
At least as far as I can determine, Min, Dental schools still do a very poor job of preparing dentists and ENTs to recognize facial pain of non-dental sources. I've heard it said (though I haven't been able to confirm this from documented sources) that in the entire dental school curriculum, facial neurology training comprises less than 12 class hours. This has been a subject of many discussions among the Medical Advisory Board of TNA -- and a reason why Claire Patterson so often brought TNA booths to conventions of the ADA.
This is an interesting conversation because it was my dentist who diagnosed the TN. It was the ENT that sent me to the dentist because he thought my facial pain was TMJ. He said the pain in my face wasn't being caused by a sinus infection which had cleared so it had to be TMJ. The dentist didn't catch it at that time but after she recently finished the dental work that I really did need I was still having pain in the teeth plus electrical shocks through my face. I had not felt the shocks before that but I had felt constant dull aching pain with occasional intense pain shooting through my face. She also hit the nerve with the injection the last visit. I had electric shocks go through my entire face while she was doing it. When she finished she described it and said she hit the nerve. I returned within a couple of days because of the unbearable pain. When I returned for my crown I discussed with her all the strange things I've been having in my face since the car accident and she said those were clear symptoms of trigeminal neuropathy. At least I finally had an explanation for everything I've been going through all these years. Yes, the pain is worse now (although about the same as when I was in the accident) but I have a direction. I was able to see my PCP who referred me to a neurologist. I wish it had been caught sooner but at least my dentist knew what it was. With full disclosure, my dentist received her training in China but I'm sure she had to do some sort of training in the US to become licensed here when she moved here.
Do you suppose...that maybe because TN was suspected to be rare---that when studying to be a dentist... one might've thought..they would never run across anyone with actual TN??? So they put it out of their mind and forgot, learning it.
Min, TN is still rare by comparison to most of the problems that dentists see in a general practice. And I've heard many times that it isn't unusual for a dentist to practice for 30 years and never see a confirmed case. So there's some justice in the idea that perhaps they forget. However, there is yet one more observation that seems to apply. This one is attributed to the doctor who wrote "Confessions of a Medical Heretic" in the early 1980's. He suggests that half of everything a doctor learns in med school is obsolete within five years. That principle -- if it reflects reality -- should give all of us pause. And it should be a motivator for all doctors (dentists too) to engage in continuing education on a regular basis.
no wonder were growing so rapidly