Atypical Odontalgia or something else? Ohh, how I just want to pull it out

1

I have had two highly respected authorities (Okeson and Gremillion), should anyone out there know these dentists who have specialized in orofacial pain, diagnose me with "continuous neuropathic pain" . Per my own readings, I sure do seem to fit what others call AO. The pain is continuous, with aching and burning.

However, the pain is so focused on one tooth (upper front), that I can not help but wonder if something else is going on. I would hate to have it extracted yet that is what my impulse is. On the other hand, it seems that this is an impulse that only leads to making matters worse. Or, am I overlooking something? It would be awful to find out later that an extraction would make the pain go away.

(Onset was three yrs ago. Hygienist leveraged the tooth in order to retrieve floss from back molars. Tooth has long history of being broken and repaired multiple times.)

I have had cat scan, a digital cone scan, and an mri scan....nada for any pathology. Ditto for a subsequent root canal.

Am I right to stand pat and avoid an extraction? My sense is that the best argument for sticking with the neuropathic diagnosis follows: no other explanations for the pain, a root canal was done on the tooth and the pain was not resolved, when the root canal was done the pain could not be numbed despite many injections of lidocaine, the root canal pulp was observed as vital and not infected, and when finally I used lyrica, as well as tegretol, the pain diminished.

Am in the right forum? Do others have such focused pain?

2

Hello WM Phillips,

I can't speak to how many other members here may have AO, and by my reading just today AO is typically described as continuous neuropathic pain in a focused area around a tooth. So they seem to be one and the same, but AO being a more accurate description from my understanding. You are in the right place so long as you are comfortable being here with us - as regardless of what they are calling your pain, you still have neuropathic pain in the face and jaw, and when it boils right down to it - so do all of us here. So you are more than welcome to share your thoughts and anything else with us - and we may find others here that previously were unaware of what their pain really was - find out that they share this particular variation with you. Face pain in my book is.. Face pain! It all hurts and we all must live with it, so YES you're in the right place!

You may well have read how many that have been diagnosed with classic TN as well as myself, first imagined a dental cause of our pain as most commonly for TN that is the first location to cause us pain. Personally, I ended up having four of my teeth pulled with the pain only to continue with a tooth that was no longer there. It took me 12 years to get diagnosed with TN. I agree with you at this stage I would avoid getting an extraction, it's my personal belief that unfortunately it would not help.

Neuropathy can be caused in the mouth or jaw, potentially by dental work in some people but in many cases the neuropathy pain starts without dental work also.

I agree that the use of Lyrica will likely be helping as it's main purpose in reality is to help combat the more constant neuropathic pains - but whereas tegretol is more designed to control the sharp, shooting, electrical type pain a neuropathy can bring. I myself have been diagnosed with TN1 and suspected Occipital neuralgia - though still waiting on an official diagnosis for that one. Mind you it feels like I have ON right now as I'm writing as I have had for the past 24 hours. I will need a nerve block myself to dx and treat that. But I am very glad that these meds ARE helping you!

I live in Australia and I'm sorry but what is a digital cone scan, I've not heard of that test till I read your blog post here.

Most neuropathic pain is classed as having no explanation - or in medical terms they call it idiopathic - because they do not know what is causing the pain. Whether that comes down to compression or a secondary cause, some of us will never know this. Others found that different surgery types do help, some for decades, others for only months.

When I was given a nerve block to test their theory, the block was injected into the trigeminal ganglion, while I was under sedation and they used lidocaine with a cortisone combo injection and it worked there. Your pain is originating from a very specific branch of the trigeminal nerve and maybe if they tried a nerve block at the source of that nerve instead of the nerve itself, it may get a different reaction... Something to think about.

I got to go, huge pain attack incoming, but hope to talk more with you soon!

Best wishes for a pain free day!

Kerry

3

Hi Kerry,

Thanks for the thoughtful response. What a journey you have had and continue to have!

The pain management doctor did stick a long needle into my neck as a block. Ended up being more of a mental block. By that, I just turned inward and never recalled the exact pathway. All I know is that it did nothing to numb the pain. He offered to keep sticking until he found a pathway and then at that point he would do radio frequency tx...which basically is destructive of the nerve. I declined. Not long afterwards, he shared that another patient with AO had all five pathways injected and not a single one numbed the pain. This experience humbled the doctor and he has since never said a word about pursuing radio frequency.

Re the digital cone imaging....considered the newest tool for dentists. I was told to have it done to rule out if an apicoectomy was warranted. The idiot dentist interpreted the findings as positive for pathology. When I asked about his experience, turns out he just got his new toy the day before. So I had the imaging copied and sent to teams at two different dental colleges...University of Louisville, and U.Kentucky. They were confident that there was no visible pathology and that this was just one more indication of neuropathy. These are the kinds of experience that trigger crazy hostility. Diplomacy can become rather remote. Then again, stressful thoughts will only hurt myself.

thanks again for your story, bill


Kerry said:

Hello WM Phillips,

I can't speak to how many other members here may have AO, and by my reading just today AO is typically described as continuous neuropathic pain in a focused area around a tooth. So they seem to be one and the same, but AO being a more accurate description from my understanding. You are in the right place so long as you are comfortable being here with us - as regardless of what they are calling your pain, you still have neuropathic pain in the face and jaw, and when it boils right down to it - so do all of us here. So you are more than welcome to share your thoughts and anything else with us - and we may find others here that previously were unaware of what their pain really was - find out that they share this particular variation with you. Face pain in my book is.. Face pain! It all hurts and we all must live with it, so YES you're in the right place!

You may well have read how many that have been diagnosed with classic TN as well as myself, first imagined a dental cause of our pain as most commonly for TN that is the first location to cause us pain. Personally, I ended up having four of my teeth pulled with the pain only to continue with a tooth that was no longer there. It took me 12 years to get diagnosed with TN. I agree with you at this stage I would avoid getting an extraction, it's my personal belief that unfortunately it would not help.

Neuropathy can be caused in the mouth or jaw, potentially by dental work in some people but in many cases the neuropathy pain starts without dental work also.

I agree that the use of Lyrica will likely be helping as it's main purpose in reality is to help combat the more constant neuropathic pains - but whereas tegretol is more designed to control the sharp, shooting, electrical type pain a neuropathy can bring. I myself have been diagnosed with TN1 and suspected Occipital neuralgia - though still waiting on an official diagnosis for that one. Mind you it feels like I have ON right now as I'm writing as I have had for the past 24 hours. I will need a nerve block myself to dx and treat that. But I am very glad that these meds ARE helping you!

I live in Australia and I'm sorry but what is a digital cone scan, I've not heard of that test till I read your blog post here.

Most neuropathic pain is classed as having no explanation - or in medical terms they call it idiopathic - because they do not know what is causing the pain. Whether that comes down to compression or a secondary cause, some of us will never know this. Others found that different surgery types do help, some for decades, others for only months.

When I was given a nerve block to test their theory, the block was injected into the trigeminal ganglion, while I was under sedation and they used lidocaine with a cortisone combo injection and it worked there. Your pain is originating from a very specific branch of the trigeminal nerve and maybe if they tried a nerve block at the source of that nerve instead of the nerve itself, it may get a different reaction... Something to think about.

I got to go, huge pain attack incoming, but hope to talk more with you soon!

Best wishes for a pain free day!

Kerry

4

Hi Bill,

You're welcome. And yes, it's quite a journey - one that's not much fun at times but I've learnt to accept the illness, just not the pain so much :-) but I still fight to get the treatment I deserve. In Australia there are more limitations to treatment with medicines - you get a choice of three anti-convulsants: Tegretol (carbamazepine), Gabapentin (off the books) & Lyrica. Away from the anti-convulsants there are the anti-depressants with their supposed ability to help "neuropathy". I've taken Amitripylene - took it for 10 months and after then till the present day I'm on Cymbalta instead plus I take Baclofen.

I was lucky to get put on a disability pension after losing three jobs due to side effects from my health such as excessive sick days, because at this point with TN after having had it so long - the damage done inside my head is pretty permanent, and it is most definitely progressive with more nerve damage showing up as I go. So what is that phrase? Ce la vie? And now my doctors are finally going through the process of hey what if Kerry has MS - so they're attempting to rule out all other auto-immune conditions first - but they're running out of them - but also my MRI was clear, but then most other symptoms I have lead to spinal lesions not brain.

But being on the pension means less affordability for some medications - we have a pharmaceutical scheme for some meds, but Lyrica is not on that list. It is more than I can now afford to buy - so that med is out of the question. So I take for TN: Tegretol, Gabapentin, Cymbalta & Baclofen.

I am sorry for you and other AO sufferers that the radio frequency route is not possible - and I will now ask another (maybe silly) question - what is apicoectomy? Personally, I hate dentists - all dentists, it's a long standing thing now since my late teens - before that all dentists were nice, and I had good teeth. These days, after many years of TN and tooth based triggers and pain, my teeth are not as good as they once were and even though I have the nicest dentist now, I will always leave the office with a new TN attack starting from them poking around in my teeth.

When you say your pain management doc stuck a needle into your neck? Why your neck? There aren't any trigeminal nerves in the neck! They are accessed through the cheek as far as I know, I could be wrong though. Maybe we just do things oddly here in Australia :-)

Cheers ~ Kerry

*******

wm phillips said:

Hi Kerry,

Thanks for the thoughtful response. What a journey you have had and continue to have!

The pain management doctor did stick a long needle into my neck as a block. Ended up being more of a mental block. By that, I just turned inward and never recalled the exact pathway. All I know is that it did nothing to numb the pain. He offered to keep sticking until he found a pathway and then at that point he would do radio frequency tx...which basically is destructive of the nerve. I declined. Not long afterwards, he shared that another patient with AO had all five pathways injected and not a single one numbed the pain. This experience humbled the doctor and he has since never said a word about pursuing radio frequency.

Re the digital cone imaging....considered the newest tool for dentists. I was told to have it done to rule out if an apicoectomy was warranted. The idiot dentist interpreted the findings as positive for pathology. When I asked about his experience, turns out he just got his new toy the day before. So I had the imaging copied and sent to teams at two different dental colleges...University of Louisville, and U.Kentucky. They were confident that there was no visible pathology and that this was just one more indication of neuropathy. These are the kinds of experience that trigger crazy hostility. Diplomacy can become rather remote. Then again, stressful thoughts will only hurt myself.

thanks again for your story, bill

5

Alana,

I'm considering a procedure...frankly, I won't even say what it is....but for the first time I have a pain management physician who has accepted his role as an advocate. He claims that he will speak directly with another provider to see if there is any validity to proposed treatment. When it comes to dentists, I strongly believe that there needs to be a major litigation case that will result in severe pain to the pocket book. At the present, their boards protect them. Our disease is rare; there are no conclusive studies of prevalence; the dental schools do not teach neuropathic pain; the boards do not recognize a protocol for diagnosing neruopathic pain. From my ripple in the pond I do not see these elements changing from the bottom up within the next 30 years. The alternative is shock and awe to the dental practitioner. As a group, they display an outrageous insensitivity to the proximity of their needles to the CNS. They are second class citizens within the medical community. They accept an inadequate educational curricula. They are more interested in being jolly and figuring out how to make more money with the latest cosmetic procedure. Well, I guess I have a prejudicial bias. I'm open to tempering my attitude, but then again many of us have earned the right to express some outrage.

Alana said:

Kerry,

I had apicalectomies on those same 2 upper front teeth because for some unknown reason, I developed raging infection in both of those root tips 23 yrs after they had root canals. The oral surgeon said that the gutta percha, the filler in the root canals, often eventually leak, opening the way for infection. An apicalectomy is when they cut off the root tips. Only reason I know of, is to do that when they are infected.

So much for my additional dental surgeries!

Alana

6

Alana, It is hard not to be long winded when discussing this pain. I now have a canned short history that gets constant editing. Shorter, less hostile, matter of fact. In real life I am very grumpy. An old friend of mine complains about being tired. Why? He was never used to pain, totally sedentary life style, got arthritis in his hands, and complained so much that he has been on morphine, tramadol, and neurontin for a year. And, he wonders why he is tired. Was it mean spirited when I called him a “sissy.” Your response shows a calm and centeredness, quite striking. Thank you for your best wishes. I keep searching. It’s my job.



Alana said:

Hi William, yes I have constant focused pain on my upper centrals, burning, pretty much constantly, sharp if anything hits them or my teeth touch, or if I bite into something of any density (e.g., I can't eat apples, etc.) As for steak, it depends on how they're behaving that day. I have intense pain that sends me t o the ceiling if anything touches the gums above those teeth in the front, particularly the area by my lips. That particular pain, and pain extending bilaterally up my nose and into my sinuses all came about after I had a pituitary tumor removed 23 yrs ago. They went in through my upper jaw (maxilla) above my teeth, and that's all she wrote. Pain was constant and excruciating for over a year, sharp pain, stabbing pain. I had root canals done on the teeth hoping that was the problem. I just ended up w/even more pain after the endodontics. In addition to the pain caused by the pituitary surgery, I also have intermittent sharp shooting pains bilaterally which also knock me on my keester.

And now after 2 glycol injections, and a radiofrequency coagulation...I would never ever have neurosurgery again. I need an MVD, thin slice MRI clearly demonstrated that. But I do not see myself ever having that done. I've done sufficient damage. I realize MVD is to release the nerves from blood vessels, not damage the nerves to block pain as rhizotomy is supposed to do. The types of surgery I had was purely destructive. Had I found this site earlier, I would never have had it. And the surgery was supposed to block pain in the upper jaw so I could have work done on those 2 front teeth...the surgery was totally botched. The area that was supposed to be numbed barely got touched, so I still had excruciating pain even w/anesthetic injections when those teeth were worked on. But the surgeon completely wrecked the branch going to nerves in my lacrimal glands and left eye. So I now have severe dry eye, which causes severe recurrent corneal abrasions. No way, no more surgery, nothing. And extracting my front teeth would do nothing to stop the pain. It'd just add to it. And my gums would never tolerate me wearing a partial - nothing can touch the gums.

I'm very long-winded, sorry.

Alana

Personally, with the experience I've had with my teeth, and from reading the sad, painful stories of so many people in here who have had root canals in teeth, or teeth pulled - I would not have my teeth pulled. But that's me. My root canals caused no difference at all, except to add more pain. So I know that extracting them wouldn't do any good with my particular nerve damage.

And Kerry, Apicalectomies are when the root tips of your teeth are lopped off to treat infection in the roots of the tooth. The old way they used to do root canals was to literally put "pins", cylindrical pieces of metal, in the root tips after they were cleaned out. They did not fill the roots with anything. My upper centrals were done almost 24 yrs ago, and fell into the old treatment category. The pins eventually oxidize, and infection enters the root tips causing abscess. So all root canals done 15-20 yrs+ ago will eventually abscess. That's what my endodontist told me. So...I have more apicalectomies in my future :( .