Hi everyone - I just joined this site yesterday. I wanted to try to briefly share my story and hopefully one of you can give me some information on what I should do or try next. I had some fillings redone last summer by my then dentist of 15 years. I had never had any tooth pain or ache in my life - I went in for my cleaning and exam feeling great in May 2009 and was told I had 6 leaking cavities. She refilled them on 2 different dates in June. The pain I still have started right after then. Of the 6 teeth she worked on, 3 of them have turned into root canals and tooth #14 has had 3 root canals. I had never had a root canal prior to all of this. The pain I had then and still have is a constant burning, shooting pain in my upper back molar (#14). I was told I needed a root canal. The pain never got better and may have gotten worse afterwards. I found out in Oct 2009 when I met my new dentist that I had a deep bone infection and was treated for 2-3 weeks of antibiotics. I begged for an antibiotic from both endodontists who worked on this tooth to no avail. I don’t know if an extended infection for months could have made my situation worse. I was put on Trileptal, Lyrica and Cymbalta and took these for 6 months with no improvement and the side effects were awful. I stopped taking these meds in April of 2010. I have had a Cone Beam Scan on the tooth and it appears all of my 4 canals are slightly overextended and my sinus lining is inflammed. I had several excruciating nerve blocks performed this morning with no relief. I also have a burning pain around the gumline of this same tooth - it feels like my gums are cut. The block did help that pain but not the deep shooting pain inside the tooth. I am at my wits end and am feeling so down. I have a wonderful husband who I couldn’t have made it this far without his help and 2 young daughters who want and need their Mother back. I never feel good enough to do much of anything but take one day at a time. I’m 44 years old and this started right after my 43 bday. I read where Atypical Odontalgia is predominant in women in their mid forties. There is no doubt I know when this pain started and since I’ve had other teeth since then that had root canals - I know the difference between a standard tooth ache and deep shooting burning pain. Sorry for the long story - this is actually the short version - over $10000 later and still no relief or definitive answers.
Hello, Rae…
What you are describing might be called “atypical odontalgia” and probably would be by a lot of dentists. Unfortunately, I’m not at all sure this “disorder” is actually a medical entity at all, not withstanding the scholarly papers that have been published on it. Another and more honest name for it(in my personal opinion, informed by 15 years of reading literature as a layman) could be “deep dental pain of unknown origin that moves around unpredictably.”
However, there is a small minority of dental practitioners who might suggest that what you are dealing with might actually be something called “Neuralgia Inducing Cavitational Osteonecrosis” (NICO). Mainstream dentistry has made a persistent effort for years to suppress this minority and drive them out of practice. The reason for such a reaction is that the NICO advocates believe many cases of facial pain are caused by deep bone infections such as you report, which are caused by improperly performed root canals or dental surgery not accompanied by sufficient antibiotics delivered to the natural cavities which surround the distribution of the peripheral branches of the trigeminal nerve in the jaw bones.
Clearly there is economic self-interest on the part of some dental practitioners. A positive finding for NICO as a medical entity might put many of them at risk of law suits for negligence or malpractice. Not being a medical or dental practitioner myself, I am forced to watch this particular cat fight from the sidelines, as it were. But I’ll admit to having suspicions that economics has so far trumped science and observation in this area. I don’t know of a single meaningful trial to examine the premise that some forms of neuropathic facial pain can be traced to deep bone infections following root canal. Something may be out there in the literature, but if it is, then it seems to be hiding in plain sight.
A basic question may have a bearing on how you got where you are and what should be done about it. Did the first dental X-rays taken by your regular dentist reveal any conclusive evidence of dental abscess or of any other actual damage from “leaking cavities”? If there was no previous pain and no X-ray evidence of damage that could be corrected by replacement of the fillings, then I’d be suspicious that your former dentist was trying to top off his 401K account by ripping off your insurance company, rather than treating an actual problem.
Interestingly, when I ran the term “leaking cavity” on google, I got only 209 hits. Adding “Dental” to the search brought the yield down to 70 hits. All of those that I scanned in the top 10 had to do with patient postings and inquiries, rather than published work in the medical literature. The term as a phrase doesn’t appear in the Pub Med abstracts database at all. I also tried the match between “dental cavity” and “leak” at Pub Med, and got three hits back, one of which was interestingly titled “Do our composite fillings leak?”
To tell you the truth, I smell a rat.
I think you may need a consult with a lawyer who handles dental malpractice cases. I’m not sure there IS any such medical entity as a “leaking cavity”. But someone who specializes in suing doctors and dentists may be able to tell you with greater authority than mine. Likewise, if the root canals are over-extended into the sinus lining, then I’d have to guess that a medical error was made. But again, you need a professional to tell you whether my instincts are anywhere close to on target, here.
Now to our immediate issue with pain.
If you haven’t been tried yet on Carbamazepine (Tegretol) or Baclofen (Neurontin), then it may be appropriate for you to be tried on one or the other or both. Likewise, Lyrica isn’t the only anti-depressant med. The class of tri-cyclic anti-depressants have been shown to be effective in some patients who have atypical forms of facial nerve pain. Like anything else in the medical dental field, you may have to be tried on titrated (tapered-up) doses of more than one medication in the class, before you find a combination of primary effectiveness and acceptable side effects.
I hope this gives you a starting point for further consultations. For your own safety, be aware that I am not a licensed medical or dental practitioner. I’ve been doing online research for close to 20 years, and on behalf of facial pain patients for about 15 years. But you need to check my input against the opinion of someone trained as a professional in medicine.
Go in Peace and Power
Red
Thanks Red so much for your thoughts and comments. I too think my former dentist is at fault and I may pursue that but right now I just need relief and a clear diagnosis. My pain is just in a top molar #14 and is constant but does change in pain degree from bearable but still awful to unbearable and debilitating. Is Tegretrol the older drug that is now being replaced with Trileptal? The Trileptal put me in the ER last halloween day since it had delpleted my body of sodium, etc. I collapsed thankfully before putting my small girls in the car from school. The ER physicians said I could have easily gone into a coma or had a stroke - my story just keeps getting better, right? So I immediately stopped the Trileptal and continued Lyrica and Cymbalta to no avail - just out of it, tired, gained weight,etc. sideeffects so I stopped all meds last April. I started taking Pristiq, an anitdepressant, a couple of months ago and it has helped with dealing with this but not with the pain. I’m probably going to switch to another tricyclic one - any idea of one that people feel helped them? I’ve read about Elavil. I have a rx for neurontin that I never started taking. It is 300mg once a day at bedtime. Maybe I should start taking it tonight. I understand you are not a Dr. but I truly do appreciate yours and anyone else’s thoughts on this. Are there a lot of people on here with this type of pain? Where do I find them? THANK YOU
Rae McGoldrick said:
Thanks Red so much for your thoughts and comments. I too think my former dentist is at fault and I may pursue that but right now I just need relief and a clear diagnosis. My pain is just in a top molar #14 and is constant but does change in pain degree from bearable but still awful to unbearable and debilitating. Is Tegretrol the older drug that is now being replaced with Trileptal? The Trileptal put me in the ER last halloween day since it had delpleted my body of sodium, etc. I collapsed thankfully before putting my small girls in the car from school. The ER physicians said I could have easily gone into a coma or had a stroke - my story just keeps getting better, right? So I immediately stopped the Trileptal and continued Lyrica and Cymbalta to no avail - just out of it, tired, gained weight,etc. side effects so I stopped all meds last April. I started taking Pristiq, an anitdepressant, a couple of months ago and it has helped with dealing with this but not with the pain. I'm probably going to switch to another tricyclic one - any idea of one that people feel helped them? I've read about Elavil. I have a rx for Neurontin that I never started taking. It is 300mg once a day at bedtime. Maybe I should start taking it tonight. I understand you are not a Dr. but I truly do appreciate yours and anyone else's thoughts on this. Are there a lot of people on here with this type of pain? Where do I find them? THANK YOU
Tegretol is not being “replaced by” Trileptal, though some patients who haven’t had success with Tegretol seem to to do better (to have fewer side effects) on Trileptal. Likewise, 300 mg once daily for Neurontin is a very minimal dose. Like other anti-seizure drugs, dose must be tapered up over time, and under a doctor’s supervision. Many patients find they can handle Neurontin at doses in the 2400 to 3200 mg/day range. My wife now takes 2700 mg per day and gets fairly good pain management – it takes the top off the iceberg, to use her words.
I don’t think there is any one tricyclic antidepressant that does better for most pain patients than the others. Elavil (amytriptylene) is one of the options, but not the only one. Likewise, be aware that there is some evidence in medical literature that the tricyclics have a cross-coupled action against neuropathy pain that goes beyond their use against depression itself. I haven’t heard of such an effect for specifically for Cymbalta, which is an SSNRI (Selective Seretonin and norepinephrine reuptake inhibitor. But a physician would have a more authoritative opinion than mine on such matters.
Regards, Red
Hi Rae,
So sorry to hear of your struggles and the pain you are in. I know what you are going through. My pain started back in 2004. I am 37 years old today. My story is long but I will try to shorten it. My pain all started in a back tooth on my lower right side. The pain started 3 months after I lost my first baby. ( I still think hormomes played a role in bringing this to the surface) My pain was coming from a tooth that had already been root canaled 5 years prior. So it didn’t make sense to me why my tooth was hurting all of a sudden. So I had another root canal done on the tooth the pain still didn’t go away. The docs then said I needed a root canal on the other tooth in the back. I had one done and I still continued to have pain. I finally decided to pull the original tooth where the pain was coming from because I felt like it HAD to be the tooth. Anyways, the pain still persists, this time it is now in the tooth next to the one I had pulled and in my gums on the bottom right side. The pain radiates into my jaw and face up to my cheekbone. I would decribe it as a burning, deep, gnawing, ache, ranging in intensity from day to day. I find stress and anxiety make my pain worse. After 6 years I am finally working with a decent neurologist who has been trying me on different meds. Right now I take 150 effexor for the depression. 800 Tegretol, 1mg clonazepam and knock on wood I feel my pain is finally being controlled. I still have pain but not like what I was getting. The neurologist doesn’t know what is wrong exactly. He is just going by my response to the tegretol. Usually if you have a response to Tegretol it tells the doctor that you most likely have some damage or inflammation along the trigeminal nerve. I was also on Elavil in the past. It worked for me but then stopped working. So I would definitely give that a try. You really should also try Tegretol and see what happens with your pain. Get yourself a good neurologist and don’t pull any more teeth. Try Clonazepam as well. As soon as I start feeling the pain creep back in I take 1mg of it and it truly reduces my pain level. Your pain sounds similar to mine with the burning in your gums and teeth. I hope you find relief soon and if you have any questions just ask!
Lori, your reported pattern of pain is classic for a complex facial pain disorder called “atypical odontalgia”. The label doesn’t help much, as it seems to be pretty much synonymous with “shifting / intermittent dental pain not associated with discernible abscess”. But it might prompt your neurologist to do some brushing up on treatment literature.
Go in Peace and Power
Red
Hi Red,
Thanks for your message. My neurologist thinks my pain is atypical and is calling it Atypical Trigeminal Neuralgia. Why or what happened no one knows. The pain I get also branches out into my face. I don’t know if that is synonymous with Atypical Odontalgia. The American Academy of Orofacial Pain quotes this "When the pain comes from the part of the nerve close to the teeth or gums, injections of local anesthetics and steroids may be effective. " It also quotes “The pain actually starts at the peripheral nerves that go to the teeth and in some cases can progress to changes in the central part of the nervous system that then senses tooth pain.” I’m not sure what the second quote means. One thing I have never tried and I don’t know why noone has tried this yet is a steroid injection. I really, really want to try this but do not know who to speak to about this. My neurologist wants me to go in for a glycerol rhyzotomy. You seem to have alot of knowledge so could you shed any light on what you think about the glycerol rhyzotomy procedure? Any thoughts, I know you are not a doctor and don’t know my case but would this be a huge mistake if I tried this? I just don’t know what to do anymore. My pain seems to be controlled right now but I am by know means pain free.
Thanks for your advice and guidance!
Lori
Hi Red _ I keep getting all of this computerjumble on here when I try to reply to you by clicking on the reply button - maybe it’s something wrong with the site so I hope you get this. Thank you sooo much for all of your information - being on here and finding all of you is the best thing that has happened since this started - I finally have found people just like me. I am trying to find the right neurologist right now and will talk to them about all of the suggestions Ive read about on here. Thank you again - hope you and your wife are having a good day.
Tegretol is not being "replaced by" Trileptal, though some patients who haven't had success with Tegretol seem to to do better (to have fewer side effects) on Trileptal. Likewise, 300 mg once daily for Neurontin is a very minimal dose. Like other anti-seizure drugs, dose must be tapered up over time, and under a doctor's supervision. Many patients find they can handle Neurontin at doses in the 2400 to 3200 mg/day range. My wife now takes 2700 mg per day and gets fairly good pain management -- it takes the top off the iceberg, to use her words.
I don't think there is any one tricyclic antidepressant that does better for most pain patients than the others. Elavil (amytriptylene) is one of the options, but not the only one. Likewise, be aware that there is some evidence in medical literature that the tricyclics have a cross-coupled action against neuropathy pain that goes beyond their use against depression itself. I haven't heard of such an effect for specifically for Cymbalta, which is an SSNRI (Selective Seretonin and norepinephrine reuptake inhibitor. But a physician would have a more authoritative opinion than mine on such matters.
Regards, Red
Lori Branco said:
Hi Red,
Thanks for your message. My neurologist thinks my pain is atypical and is calling it Atypical Trigeminal Neuralgia. Why or what happened no one knows. The pain I get also branches out into my face. I don't know if that is synonymous with Atypical Odontalgia. The American Academy of Orofacial Pain quotes this "When the pain comes from the part of the nerve close to the teeth or gums, injections of local anesthetics and steroids may be effective. " It also quotes "The pain actually starts at the peripheral nerves that go to the teeth and in some cases can progress to changes in the central part of the nervous system that then senses tooth pain." I'm not sure what the second quote means. One thing I have never tried and I don't know why noone has tried this yet is a steroid injection. I really, really want to try this but do not know who to speak to about this. My neurologist wants me to go in for a glycerol rhyzotomy. You seem to have alot of knowledge so could you shed any light on what you think about the glycerol rhyzotomy procedure? Any thoughts, I know you are not a doctor and don't know my case but would this be a huge mistake if I tried this? I just don't know what to do anymore. My pain seems to be controlled right now but I am by know means pain free.
Thanks for your advice and guidance!
Lori
Hi, Lori:
Atypical Trigeminal Neuralgia is not the same medical entity as Atypical Odontalgia, although both might be regarded as descriptive terms rather than actual “disorders”. Odontalgia is experienced as a pain in the jaw immediately adjacent to the teeth, sometimes as pain that seems to move unpredictably between several teeth . Both typical and atypical TN, however, can occur anywhere in one side of the face, from the midline of the skull down to the lower line of the jaw.
About steroids, I’m afraid that the news isn’t very positive. They rarely seem to help facial neuropathy pain patients, and the reasons for that outcome aren’t altogether clear in medical literature. You also asked about glycerol rhizotomy. From what I’ve seen during 15 years of talking to patients and researching literature for them, I would personally recommend AGAINST glycerol as a procedure of choice. Recurrence rates are very high – generally about half of all patients have pain again within about two years, and very few are pain free for 7 or more years. Radiofrequency Rhizotomy (sometimes called “RF Ablation”) has a better record of longer term effectiveness.
However there is a serious reservation that applies to both procedures: neither one of them does as well against Atypical TN as against the more typical form of TN which involves volleys of electric-shock stabbing or lancinating pain lasting up to two hours. I want to check statistics before I quote from memory. I’ll get back to this thread when I have (it’s pushing late in the evening in SC). Meantime, there is a long and very informative article by Dr. Tew and Dr. Taha that compares outcomes of various surgical procedures. It has been mounted on the TN Association site since 2000. I’ll also look up the address of that article tomorrow, and send it along.
Go in Peace and Power,
Red
Sometimes I think that the different classifications are not clear cut. I started with pain which moved between 2 molars in my back lower jaw. I was fortunate in that my dentist performed x rays and root canal checks before saying that the problem was neurological not dental. After that I got the classic nerve shocks of TN along the jaw and up the cheek. Then the pain started to move around in different places [upper teeth, tongue, cheek, chin, problems swallowing etc].
From my reading I can now see that the nerve has been sending impulses to the brain which affects the muscles. They go into spasm and send more messages to the central nervous system, causing more spasms in related muscle groups in an attempt to protect what is perceived as a threat. Depending on the particular muscle there are different symptoms:- the masseter [chewing] muscle can send pain to the back lower jaw or upper jaw, causing pain like sinusitis. The medial pterygoid muscle inside the jaw can cause problems with swallowing. There are many other muscles in the jaw, face and neck which can cause pain. No wonder that this condition is so complicated and varied.
Richard A. “Red” Lawhern said:
Lori Branco said:Hi Red,
Thanks for your message. My neurologist thinks my pain is atypical and is calling it Atypical Trigeminal Neuralgia. Why or what happened no one knows. The pain I get also branches out into my face. I don’t know if that is synonymous with Atypical Odontalgia. The American Academy of Orofacial Pain quotes this "When the pain comes from the part of the nerve close to the teeth or gums, injections of local anesthetics and steroids may be effective. " It also quotes “The pain actually starts at the peripheral nerves that go to the teeth and in some cases can progress to changes in the central part of the nervous system that then senses tooth pain.” I’m not sure what the second quote means. One thing I have never tried and I don’t know why noone has tried this yet is a steroid injection. I really, really want to try this but do not know who to speak to about this. My neurologist wants me to go in for a glycerol rhyzotomy. You seem to have alot of knowledge so could you shed any light on what you think about the glycerol rhyzotomy procedure? Any thoughts, I know you are not a doctor and don’t know my case but would this be a huge mistake if I tried this? I just don’t know what to do anymore. My pain seems to be controlled right now but I am by know means pain free.
Thanks for your advice and guidance!
Lori
Hi, Lori:
Atypical Trigeminal Neuralgia is not the same medical entity as Atypical Odontalgia, although both might be regarded as descriptive terms rather than actual "disorders". Odontalgia is experienced as a pain in the jaw immediately adjacent to the teeth, sometimes as pain that seems to move unpredictably between several teeth . Both typical and atypical TN, however, can occur anywhere in one side of the face, from the midline of the skull down to the lower line of the jaw.
About steroids, I'm afraid that the news isn't very positive. They rarely seem to help facial neuropathy pain patients, and the reasons for that outcome aren't altogether clear in medical literature. You also asked about glycerol rhizotomy. From what I've seen during 15 years of talking to patients and researching literature for them, I would personally recommend AGAINST glycerol as a procedure of choice. Recurrence rates are very high -- generally about half of all patients have pain again within about two years, and very few are pain free for 7 or more years. Radiofrequency Rhizotomy (sometimes called "RF Ablation") has a better record of longer term effectiveness.
However there is a serious reservation that applies to both procedures: neither one of them does as well against Atypical TN as against the more typical form of TN which involves volleys of electric-shock stabbing or lancinating pain lasting up to two hours. I want to check statistics before I quote from memory. I'll get back to this thread when I have (it's pushing late in the evening in SC). Meantime, there is a long and very informative article by Dr. Tew and Dr. Taha that compares outcomes of various surgical procedures. It has been mounted on the TN Association site since 2000. I'll also look up the address of that article tomorrow, and send it along.
Go in Peace and Power,
Red
This note is to continue the discussion and provide information resources beyond those of my own experience and opinions. I will also cross-post it to an ongoing thread in the Discussions forum at the TN Association website.
Concerning “Atypical Odontalgia”, there is a very long article on Medscape which reviews the a large number of literature resources. I believe you may have to join medscape to read it, but the login is free and the site is one of the best medical resources in the world, for neurological pain.
See http://www.medscape.com/viewarticle/465413
Likewise I dug into a couple of resources to find the article by Tew and Taha on outcomes of various surgical procedures. In the process, I tripped over a couple of things I hadn’t seen before, which seem potentially useful
http://www.fpa-support.org/learning/Articles/2009/documents/mvdworwoconstantpain2008.pdf
"EFFECT OF MICROVASCULAR DECOMPRESSION IN TRIGEMINAL NEURALGIA PATIENTS WITH OR WITHOUT CONSTANT PAIN"
This article seems to confirm the observation I’ve heard informally, that MVD may be appropriate for patients whose pain includes a constant or burning component in addition to the more typical bursts of electric shock pain regarded as “Type 1 Trigeminal Neuralgia”.
http://www.fpa-support.org/learning/Articles/2008/documents/JNS_MVD_0108.pdf
“Microvascular decompression for primary trigeminal neuralgia: long-term effectiveness and prognostic factors in a series of 362 consecutive patients with clear-cut neurovascular conflicts who underwent pure decompression”. This article discusses outcomes of MVD in one of the larger groups of cases reported in medical literature apart from the Janetta articles in NEJM. Interestingly the authors state “Patients with atypical neuralgia (a baseline of permanent pain) had the same outcome as those with a typical (purely spasmodic) presentation.” The article also found a 73% rate of pain relief up to 15 years, and confirms that absence of clear nerve compressions in MRI imagery doesn’t mean they aren’t there or won’t be found during surgery. The article is remarkable for a deep statistical analysis of outcomes, but it is long and can be tough reading.
Janetta et. al. published their results for 1135 MVD operations in the New England Journal of Medicine, as summarized in an abstract at Pub Med: http://www.ncbi.nlm.nih.gov/pubmed/8598865
"The long-term outcome of microvascular decompression for trigeminal neuralgia"
The article I had in mind by Tew and Taha on surgical outcomes is summarized in the Pub Med abstracts database: http://www.ncbi.nlm.nih.gov/pubmed/8727810
“Comparison of surgical treatments for trigeminal neuralgia: reevaluation of radiofrequency rhizotomy.” A key finding is that initial outcomes from RF Rhizotomy can be comparable to those of MVD. I haven’t been able to find the full article on-line at TNA, I still have the HTML section drafts for the article that I put up on the TNA website in the late 1990s. If anybody wants to read the article at length rather than scan its abstract, I can be reached off-board by email at ■■■■■■■■■■■■■■■■■■■.
FINALLY, one clarification on something that Lori asked about, and Pat also discussed:
" The American Academy of Orofacial Pain quotes this “When the pain comes from the part of the nerve close to the teeth or gums, injections of local anesthetics and steroids may be effective. " It also quotes “The pain actually starts at the peripheral nerves that go to the teeth and in some cases can progress to changes in the central part of the nervous system that then senses tooth pain.” I’m not sure what the second quote means.”
By way of explanation – there is “some” medical evidence that when nerves are damaged in some way out on the ends of their normal distribution (in the “peripheral” areas), and pain is not adequately managed, then a series of complicated changes can occur in the entire nerve chain, all the way back into the central nervous system of the brain stem. These changes are associated with production of gene mutations and at least some molecules that are regarded as toxic to the nervous system. Possibly because of the changes, the Central Nervous System can become “sensitized” to stimuli that would normally not produce pain at all, but which now do because of the sensitization itself. A lot is still to be learned about this complicated neurochemistry. And I can’t claim to understand all of the details. But perhaps this might explain the comment Lori received…
Feel free to follow up, guys. Sorry to dump all this reading in your laps. Some folks would rather have “the” answer instead of struggling to pick up the broad principles. But sometimes there just isn’t “one” answer.
Go in Peace and Power,
Red
Hi Lori - Thanks for writing me back. I am so sorry to hear about you and all the others here. It’s just awful that it’s so hard to find a decent doctor. How did you find your neurologist because my last one said he just couldn’t help me and walked out! He did prescribe Tramadol for me 50mg up to 6 times a day. This seems to take the chip off the iceberg but doesn’t truly knock out the pain. Ihate the side effects. I tried Trileptal and wound up in the hospital last year this time. Do you have any side effects from teh Tegretrol? Is your pain constant burning or episodic? I hope you continue to feel better - knock on wood. I’m at my wits end and am really down. I also take Pristiq 50 mg a day - similar to Effexor. I also take Clonipan 25 mg whenever I need it - I’m scared to take 50 because I have 2 small girls I ahve to take care of and drive to and from school, etc. I don’t want to live like this but it seems like from everything I’ve read that this is not going to go away. I wish someone could kill that nerve somehow but it doesn’t look like there are any surgical treatments for neuropathic pain. Tell me more about the procedure you are considering. Thank you so much and peace be with you and everyone else on here. I’m so glad I found this site because I finally feel like I can relate to everyone else on here and I’m not alone.