Which came first? TN/ATN pain or dental pain?

My story is similar to so many others I’ve read on here. I began having pain in my upper left jaw in 2005. Like so many of you, I thought it was severe tooth pain and went to see my dentist. After assessing my x-rays, he said that I had some bone deterioration under the gums of my upper jaw, but had no idea why. He told me that in his experience, this kind of deterioration is usually only seen in patients who grind their teeth for years or are very heavy smokers; neither of these applied to me. I was referred to a periodontist who performed a root canal and some tissue regeneration in early 2006. My pain subsided until the fall of 2007, when it returned with a vengeance. It was the same pain coming from the same area as before so I went back to the dentist (I had moved by then so it was a different dentist, but he had my history). I begged him to please remove the two back molars as they seemed to be the source of my pain, and he agreed. Sure enough, the pain disappeared and I was thrilled, assuming that this would be the end of my issue with this pain. But just as before, the pain returned six months after the double extraction. Back to the dentist; asked him to remove the next tooth in the line, leaving me now with no teeth on the upper left side. Same as before, the pain subsided only to return six months later. This time, since there were no teeth left to extract, the dentist advised me to talk to my GP about it. I went to see my family doctor a few days later and this was the first time I heard the term Trigeminal Neuralgia (it should be noted here that I later learned that my dentist was extremely informed and educated on the topic and I’ll never understand why he never thought to mention it – I wish I could sue him!!!). I haven’t had a day without pain since September 2008 and since then, I’ve been bounced around to different neurologists, some of whom are calling it ATN, others the generic label of AFP.

So my question for those who have experienced something similar is this: do you believe that your pain was always TN/ATN and you never needed any teeth removed in the first place OR do you believe that your TN/ATN pain was caused by dental work, and why?

Michelle,

That really stinks that a dentist who should have known better (given his knowledge base) extracted so many of your teeth needlessly. I'm so sorry that you had to go through that. I hope that you will be able to find a neurologist that is able to help and diagnose you correctly.

My own facial pain history and dental issues are pretty well entwined. My first episode of trigeminal-like pain was in May 2003 when I had shooting, stabbing left-sided facial pain for four days that resolved spontaneously. A year and a half later, in December 2004, I had the exact same symptoms on the right side, except that it was a million times worse. This lead to the discovery that my upper left back molar was broken in half and needed to be extracted. The extraction was difficult because they could not get the area numb and because the tooth came out in several pieces. I continued having sharp shooting pain in that area for months afterwards. Around the same time, the back upper molar on the right side was found to be broken in half as well. Thankfully, this extraction was not done under duress and I healed quickly from it. It is difficult to determine if these episodes of sharp, shooting pain were due to the teeth being broken in half or from TN. Since then, the pain has evolved and now has a burning, boring quality that migrates to all four quadrants. To further complicate matters, the broken teeth are likely the result of having been hit by a car years ago and landing on my head and even more teeth have been found to be fractured. In an effort to save them, the fractured teeth that have been root canaled and crowned. All of the dental work has aggravated the facial pain, of course, but I didn't want to lose any more teeth to fractures. My dentist and endodontist have been very conservative in their treatments and only teeth with obvious physical damage have been treated, so I feel that their actions have been responsible and appropriate to the situation. In fact, they have gone above and beyond to help me. Neuropathic pain is simply very complicated.

I hope this is helpful.

Take care,

Chris

I got pain in my teeth first, and then I went to the dentist. It was a very light pain at first, but a 24/7 pain. Then I went to the endodontist. After that first exam with the cold test, the pain just took off and went crazy. I still thought it was my teeth, so I went and got endodontically tested like 6 times in 2 months. That gave extra trauma to the nerve and I always wonder if the pain would have resolved had I never gone to the dentist/endodontist.

I had three root canals and one extraction before I went to a neurologist. The neurologist said under no circumstances should I have anymore teeth removed. I believe the tn came first and, like you I thought it was a dental problem. In my case the dental work made it worse and I have had pain everyday or almost I’ve years.

In the years I've supported facial pain patients, I've heard all of the stories in this thread multiple times. Some patients are convinced that their TN pain began with some error on the part of a dentist or endodontist. Others relate having had multiple teeth extracted as their dental practitioners "chased" the pain around in their mouths, all without consideration of the possibility that the pain wasn't dental in origin.

From that background, I would personally advocate for a standard of best dental practice to the effect that patients who have pain but no X-ray evidence of abscess should first be treated with a short course of an anti-convulsant med (Tegretol, Neurontin) before either root canal or extraction are applied. I'd also like to see dental school curricula rebalanced by at least tripling the time (at one time averaging only 8 hours in class) spent in reviewing sources of facial neuropathic pain. The time could be compensated by reducing the time spent on justifying diagnoses of TMJ Disorder -- which I consider to be presently over-diagnosed on the basis of profoundly flimsy and imprecise criteria.

Regards and best,

Red

Hi Melissa,

I'm sorry you had to go through that for so long, not knowing you had TN/ATN. I cannot believe how many doctors I've encountered with this who treat me like a number - just because they don't know how to fix it! Errrrrrr...

Anyway, I think the TN pain comes first in most cases. I had sensitivity in one of my teeth two summers ago. The dentist didn't see anything wrong and didn't pull any teeth. By that fall the pain became very intense so I went back. He did X rays and still didn't see anything so he referred me to an oral surgeon who also ruled out the teeth. Thank God my dentist was one of the rare, good ones I've seen in the past few years. I also had ear pain and saw an ENT who ruled out sinus/ear problems.

I hope and pray you have a pain-free day and night:)

Mine was caused by dental work. My first attack was from the anesthetic injection which was mild compared to the 2 hour extraction…

Since my surgery I have developed TMJ and my bite is off. The doctor suggested removing my wisdom teeth because they hit, but I’m afraid it will bring on more TN pain so I won’t do it.

your narrative history is not suggestive of neuropathic pain. the pain went into remission for a given period of time on multiple occasions. if your nerve suffered iatrogenic damage, the pain would be most likely constant and you would have numbness or sensory aberrations of a varying degree. remissions and relapses are a hallmark of TN pain, because when myelin wears down from the neural compression, the nerve sends out pain signals. then, the myelin regenerates, the nerve is padded again, and the pain signals stop until the compression wears it thin again, and the cycle continues. pain on, pain off.

anti seizure medications slow down nerve activity. a dental patient can have tooth pain from a small crack, root infection, TMJ, etc. and the medication will quell the nerve pain emitting from the tooth. it therefore confounds both doctor and patient which treatment course to take.

you are 5 years forward from your first episode of pain; it is reasonable to consider your pain has graduated from episodic to constant. this is not unusual as time goes on with TN. get yourself a thin slice MRI for starters and a good neurologist and see where you can go from there.

i am not a doctor. speak to your own physician about what i have said here.

best of luck,

vesper

Thank you all so much for your input! It's so enlightening to hear from those who have experienced this pain, rather than just the opinions of the doctors - it's very appreciated.

Red - you are so knowledgeable and inspiring; it's an honor to have you as an advocate for those of us with this pain.

Vesper - I wish you were a doctor! I'd be first in line to see you!

For whatever this is worth, Vesper is sometimes deeper on some subjects of medical/surgical practice than I am. I often learn from reading her posts. And for you both, I may attempt a summary of main points made in this thread, in the new page I am developing for the site under the tab "Help with Research".

Regards, Red

My own situation is different from most everyone else here in that I have fractured teeth has a result of being thrown across two lanes of traffic and landing on my head. The underlying neuropathic pain and the "I need a root canal" pain seem to be two separate issues in my case although they have occurred simultaneously. I have been dealing with this for so long that I can now make the distinction between the two types of pain. The neuropathic pain was there before I had any dental work done and while the root canal work aggravated that pain short-term, I have had positive long-term results from having the root canal treatments done.

It is, indeed, possible to have a severely infected tooth without radiographic evidence of abscess. One of my teeth in particular had zero indication on the x-ray, but was found to be so severely decayed that the tooth was filled with pus and blood. The root canal had to be done in two stages because they put medicine in there for a week to quell the infection before finishing the procedure. When I asked why this didn't show up on the x-ray when the tooth was so decayed, my endodontist said "it happens all the time".

In the beginning, I had many questions: Did landing on my head do some damage that has yet to be found that caused this to happen? Did all of my fractured/infected teeth trigger the neuropathic pain? Was this pain caused by waiting too long to do root canals (because my dentist wanted to avoid doing unnecessary dental work)? Did I have a facial pain time bomb that would have gone off even if i hadn't been hit by the car? The idea being, of course, that if you know the cause, you can fix the problem. In the end, I placed the blame on sheer bad luck. There are far too many puzzle pieces and they don't usually fit together anyway.

Take care,

Chris

Sorry (and not to criticize you personally), Chris, but in one sense I'm afraid can't buy the full story you were given. Serious internal decay on a tooth or serious abscess in the gum do NOT occur frequently without generating X-ray evidence. The state of technology for panoramic x-ray has come a very long way in the past 15 years. If your dentist's office had been equipped properly, the decay condition in the tooth would have been evident in the prints or screen images.

To partially answer your questions, it is also common for dental work to aggravate a pre-existing facial neuropathic pain condition. That's one reason why neurologists advise TN patients to load up on their meds above the prevailing dose, before having any form of dental anesthetic by injection. The opposite can also be true: significant dental infection can cause facial neuropathy if left untreated for long periods. If you had festering conditions in your teeth, such conditions could have led to generalized neuropathic face pain -- though the pain localized to the infected tooth or teeth would likely have manifested first.

Regards and best,

Red

Red, I didn't realize that you were referring specifically to panoramic x-rays, since that wasn't mentioned until your last post. The x-rays I had taken did not use this technology. I've seen my dentist, two endodontists and an orofacial pain specialist and only the last one had a panoramic x-ray machine available. So it may be that not everyone will have access to the very best equiptment, unfortunately, including some of the other readers here. Obviously, my doctor made the right call, since the tooth clearly needed to be treated.

I certainly do not consider myself an expert on medical matters and can only speak to my own experiences.

Thank you for taking the time to respond and to answer my questions. I appreciate, too, all of the efforts you make towards promoting the best practices possible.

Take care,

Chris

Perhaps there can be a shared learning experience for all of us in this thread: when we go to a dentist with pain, and he or she is unable to get direct evidence of abscess or extensive internal decay, it may be time to ask "does your X-ray equipment meet best practice standards? If not, then where can you refer me for a more detailed imaging of my teeth before we make an extraction or root canal decision?"

Particularly for those of us who already have pain, this seems an important distinction. And it's one that I'm glad you reminded me of, Chris. I'll think about how best to integrate this lesson learned in our Help With Research page...

Regards and best.

Hi Chris

I did not know you have had all those problems with your teeth, I really hope everything turns around for you.

Having teeth problems are bad enough, and haveing TN make the problem even worse.

Take care,

Don

Chris K. said:

My own situation is different from most everyone else here in that I have fractured teeth has a result of being thrown across two lanes of traffic and landing on my head. The underlying neuropathic pain and the "I need a root canal" pain seem to be two separate issues in my case although they have occurred simultaneously. I have been dealing with this for so long that I can now make the distinction between the two types of pain. The neuropathic pain was there before I had any dental work done and while the root canal work aggravated that pain short-term, I have had positive long-term results from having the root canal treatments done.

It is, indeed, possible to have a severely infected tooth without radiographic evidence of abscess. One of my teeth in particular had zero indication on the x-ray, but was found to be so severely decayed that the tooth was filled with pus and blood. The root canal had to be done in two stages because they put medicine in there for a week to quell the infection before finishing the procedure. When I asked why this didn't show up on the x-ray when the tooth was so decayed, my endodontist said "it happens all the time".

In the beginning, I had many questions: Did landing on my head do some damage that has yet to be found that caused this to happen? Did all of my fractured/infected teeth trigger the neuropathic pain? Was this pain caused by waiting too long to do root canals (because my dentist wanted to avoid doing unnecessary dental work)? Did I have a facial pain time bomb that would have gone off even if i hadn't been hit by the car? The idea being, of course, that if you know the cause, you can fix the problem. In the end, I placed the blame on sheer bad luck. There are far too many puzzle pieces and they don't usually fit together anyway.

Take care,

Chris

Don, thank you for your kind words! Things have improved somewhat now that the fractured teeth have been stabilized, which I am very grateful for.

Red, once again, you have given us all excellent advice. For those of us in these special circumstances, access to the very best diagnostic tools is crucial in making a well-informed decision.

However, as you mentioned earlier in the thread, I do think that better training for dentists is the key element. I bet the majority of people here didn't even know of the existance of TN until they had the misfortune to be diagnosed with it. Therefore, they would not be able to advocate for themselves or even to bring it forward as a possibility. If dentists were more knowledgeable in regards to TN and were able to diagnose it sooner (or refer the patient to someone who can), perhaps some of the horror stories posted here may have been avoided.

My (youngish) dentist told me that while in dental school, he was shown a set of "horrifying" x-rays where the person had root canals on every single tooth, only to be diagnosed with TN when the root canals didn't stop the pain. It certainly had an impact on him and how he approached my situation. So, things may be looking up in that regard.

Thanks again for all the efforts you make on our behalf.

Chris

Glad to help where I can, Chris.

Part of the problem with improved care is a consequence of the relative rarity of TN. At one time it was believed that the incidence rate for TN was only 5 cases per hundred thousand per year. Recent papers from Holland and the UK indicate that number is much higher than previously believed: in the range of 12 to 28 new cases per hundred thousand per year. I am also personally convinced that if a proper job was done on reevaluating the 30 million or so current TMJ Disorder patients in the US, we would find that large numbers of them have been miss-diagnosed.

FYI, the Trigeminal Neuralgia Association has been working for almost 20 years to improve the education of dentists and endodontists. TNA frequently places booths in national conventions of the dental societies. There is a role for both professional and patient education, I think. To a degree, dentists have both benefited and suffered from the same patient expectations that grow from the traditional approach to medical professionals as "high priests of the medical religion." The internet is beginning to change that dynamic, especially at sites like LivingWithTN, the TN Association, and other online patient forums.

Good evening and thanks for the confirmation, Chris. Though this is "not about me", it's always nice to be told that one has contributed helpfully.

Go in Peace and Power,

Red

Hi Melissa,
I’d like to tell my dental story here too.
I went to the dentist with chronic toothache, Xrays showed nothing out of the ordinary. He suggested the only option was to drill the tooth to check the nerve status. Meanwhile I attended another Xray and went back to him, stating I couldn’t even tell him which tooth was aching, by now it was lower and upper molars. He refused at that stage to do any dental work, and suggested it may settle.
The pain evolved over another week or so to unrelenting typical TN pain.
I’ve now commenced treatment, I’m hoping and praying this pain will be controlled.
So you see, I have no history to blame for the onset of this awful pain, I have no idea what the trigger was. But it was not my dentist. My pain was never dental
Hope you get some relief
Robyn

I also had severe pain in my teeth on the right side. My dentist checked each tooth and couldn't find anything. I thought for sure I just needed to have a tooth pulled. In fact, I wanted him to find the one that would take the pain away and just yank the darn thing out!! Luckily he knew it wasn't my teeth (although he didn't say anything about TN) and didn't pull any teeth. My teeth were so sensitive that when I drank water I had to take little sips and hold it in the other side of my mouth before swallowing. I also had constant aching along with the shooting, sensitive pain. Between my MVD and a mouth splint, the pain has subsided. I still have pain but not nearly as bad as it was. It was awful and I hope and pray that any of you experiencing this find relief soon. God bless.