My TN started around the time I had root canal treatment. I didn't make any connection with the dental work and my TN until I saw a number of people asking the same question in these forums. Merely a coincidence or the cause? I don't think anyone can say one way or the other.
Regards
Jim
Wow Nir Morita, my story is very similar to yours up to and including the swollen lymph nodes and neck/shoulder pain. No doctors have been able to explain those things to me either.
Nir Morita said:
Hi,
Two and a hald ears ago i went to do several dental works (cleaning + fillings).
Aftet the dental cleaning i felt "weird" sensitive all my mouth - but nothing dramatic.
Then a "simple" 'deep" filling in tooth no, 37 (molar left lower jaw) and a day and a half after i gave a bit in something and the terrible pain started,
Terrible pain ....went to tens and tens of doctors. can'd describe it all now.
A month after the dental filling - the pain was 24/7 like Hell . I insisted a root canal -was done a root canal that didn't help.
the findings :
Done a "full body bone scan" that showed "something" in the mandibule area. doctors couldn't explain that.
(after a year repeated this test - and the test was fine).
first MRI -fine.
CT- fine.
For 2 years - a bit large lymph glands under the jaw. on the pain side. doctors can't explain that.
done an ULTRASOUND - was fine.
The shape of the bone in one side of my face - changed.
Started having neck- shoulder blades pain.
All this added more to the confusion. it sent me to different direction .
maybe a pressure from the shoulders or neck caused it ?
maybe the lypmh nods that are enlarged says it's an infection...
etc.
This year - I couldn't suffer the pain and pulled out two teeth. the "original" tooth and the wisdom tooth next to it
didn't really help. like something always aching in my gums. and stuck there.
i also was diagnosed with several diagnosis :
- TN -- defenetly Not TN
-ATN
-nerve Neuroma
-TN cause by blood vessel pressure
-injury from the dental injection
-and of course - Pshycological
This year - dont another MRI -and now they see a major blood vessel pressuring the nerve. was recommended an MVD.
Logically - my "TN" was caused by a dental work. cause it strated right after.
But now - they recommend an MVD. but if the injury is "local" an MVD wouldn't help a bit.
so - i guess like many i understand your position and thoughts , we are in the same place.
how is the characther of your pain ? is it "shocking /stabbing" pain like classic TN with no 24/7 pain ? or is it 24/7 pain ?
The initial source of my pain was through a sore tooth which escalated into shocking, stabbing pain. It has been under control with meds up until this week. I have had discomfort which led to bad breakthrough pain yesterday. Doctor increased my meds to 600 mg of tegretol per day. We all seem to have common tooth pain...consistent with Red's website findings. We are all seeking relief and cure! I seem to have a pattern of late afternoon discomfort/pain. Explain that???
I am calm now, but when I do have pain late afternoon is the worst. I don’t have much during sleep
I had a filling done on a rear upper tooth. It had caused no problems, just a routine filling. After, it seemed food was getting stuck between the filled tooth and its neighbour. When I flossed, the pain ( sort of tooth ache ) would go... or I'd take some asprin. After 3 months I went to another dentist... he replaced the filling. By then the pain would not go away with flossing or asprin. I attended many tooth specialists etc looking for a fix. The last guy ( professor of facial pain ) said the Tri Gem. nerve damaged thru the filling... not sure how, but it was probably that which triggered the situation. And there was no point filling / removing / root canalling the tooth. I had it removed any way. I was that desperate. No change. The rest is just the usual miserable story - although I get nausea as well, and I don't read about that being too common.
The good news, if you can call it that, I had a bit of a tooth / jaw problem a couple of months back. The dentist checked it, and put in a new filling. Oh oh the pain did not go away... it got worse. So now I have ATN on both sides, the LH being the original site. The RH is not as bad as the LH. The good news is - as I have a lot of faith in this dentist, and this happenned following his work, it probably means I should forgive the original dentist as it may well not her fault, she probably did not botch the job and cause this. It just trigggered it, but not thru bad practice. You know, things happen!
The pain ( let's not forget the nausea ! ) is a dull pain, on the side that it chooses, or both. It does feel a bit like a dental problem. It is not searing pain. It's like the sort of headache you get when you finally stop crying. Dull behind eye/s a bit. Pretty well continual.
So my condition was a consequence of the dental work, but now I believe it was not any mal practice that caused it. Good luck to you!
Nir, because you asked what laser was used, I went on their site this morning to find out. I was horrified to see that they now say you need to have a sample test done first to find out how you respond. This was not done for me, he just went straight in and did it and I screamed with pain as I knew my nerve had been hit. I wonder now if they have had problems with other patients responses to the laser and not just me? I will never be able to prove it was the laser that caused it so I am not wasting my time or energy going down that route but I do think in my case and i accept it is unusual but I do think TN was triggered by the laser (not sure what sort) and maybe other factors which were going on in my own body which no one including myself was aware of. I now realise what a risk even simple cosmetic procedures carry and it frightens me what a risk dental treatment even cleaning the teeth carries.
One thing puzzles me, if TN starts after a visit to the dentist and your pain is 24/7 does this mean the nerve is damaged rather then it being entwined or touching an artery.
Is there any hope of that nerve repairing itself?
If you suffer Classic TN after a dental or in my case a cosmetic procedure does that mean your nerve and artery ( is it always an artery?) where very close together anyway and the trauma of the experience made them touch?
The other thing I have heard is that some peoples do touch yet they suffer no pain, And why do Classic TN attacks come and go what happens to the nerve and the artery during the periods of no pain, are they no longer touching and then they touch again?
Sorry if these sound like silly questions but for all my time on here I still dont understand it all.
Mandy my dear friend on here is in constant pain had to give up her job and driving but they found an artery wrapped around her nerve and she has now thankfully had a successful MVD as the cause was found but the other situations I cannot understand.
Elstep: There are no silly questions.
If you have continuing constant 24/7 pain immediately after a dental or cosmetic procedure, then the problem very likely is neuropathy - direct mechanical damage to the nerve -- in the peripheries of the nerve distribution. I've heard from a few patients in whom this pain has faded out over a period of weeks or months. I'd say the majority don't do that well if there is actual nerve damage.
Classic TN is commonly associated with a vascular compression much closer in the nerve distribution to the emergence of the nerve in the brain stem. The two situations tend to be disjoint -- not related. But some patients whose pain started after dental procedures are found to have a vascular compression, and then have a successful MVD. This outcome is much more likely when pain is Typical (electric shock volleys) rather than Atypical (constant burning, throbbing).
Post-mortum studies done in Rochester NY in the early 1980s revealed that large numbers of people have trigeminal nerve compressions from blood vessels, but are asymptomatic. Nobody that I've read in medical literature has offered a consistent explanation for why so few of those people ever present with TN.
I hope this clarifies somewhat.
Regards, Red
Red is it due to the condition of the Myelin Sheath? Also Red have you ever heard of anyone having just one attack of Classic TN and then never suffering another? I know the same nerve is involved but why is it that TN1 and TN2 are lumped together in this way when they miles apart in symptoms, treatment, and options.
Elstep: what you are referring to as "the condition of the Myelin Sheath" may prove to be too simple an explanation for the several types of damage effects that can cause trigeminal pain. In neuropathy, it is believed that the "condition" is a discrete injury of some sort -- possibly indentation not only of the myelin sheath, but also of several types of nerve fibers that are bundled inside the nerve. In whiplash injury, it is possible that the damage mechanism isn't indentation, but abrupt physical stretching which affects some length of the nerve. In spontaneous attacks that we can't trace to a discrete event or accident or trauma, it isn't clear exactly what happens, except that the nerve becomes abnormally sensitized in some way. For TN-1, the sensitization can occur after years of vascular compression that in many people doesn't produce pain... but does in TN patients.
My surmise (and please be aware that it is one, for I don't consider myself authoritative on the history of this disorder) is that TN1 and TN2 were "lumped together" back in the Middle Ages, when a French doctor first declared that face pain patients had a discrete medical disorder of some kind. He called it descriptively "Tic Deloreaux" (Terrible Spasm). Only after a couple of hundred years passed, did other doctors begin to understand that more than one mechanism or process is involved in face pain. Anti-seizure meds have been used against this disorder for less than 75 years, and TCA drugs for an even shorter time.
So what we've got now is a serious muddle of nomenclature and vocabulary. Not to mention treatment issues galore. Institutions like the International Association for the Study of Pain (IASP) are even as we speak arguing about how best to diagnostically identify and classify different disorders which have different (though overlapping) modalities of treatment. Even the terms "type 1" and "type 2" aren't recognized by all physicians who see face pain patients. Some are so ill trained that they attribute Type 2 pain as possibly psychogenic in origin, unless they are told by the patient that there has been some discrete injury which "explains" their strange form of face pain. Sometimes I wonder how far we've come from the Dark Ages. I've spent four months wrangling with the NINDS folks over precisely these issues of terminology, in my effort to get them to update and broaden the scope of their TN Fact Sheet.,
Does all of this make sense?
Regards, Red
Thank You Red for such a full explanation which I can understand! I hope others benefit as much as myself.
Hi Christine
Thanks for asking on why my doctors think I’m not eligible for surgery. For starters my doctors think my body might be attacking its self and it would be the nerves that have to do with TN. This only a theory though but there is evidence that suggest this along with my family history of auto immune disorders and diseases. The next is mine is type two and since surgery is less affective for type two they don’t like to do this. Also both doctors think surgery, nerve blockers or injections will end up doing more harm and damage than good. Lastly my age has something to do with it. I can remember fully the reason on this. I trust both of my doctors on this, my neuro has experience with TN and OHSU has a clinic for TN that is known for being one of the best for the west coast. OHSU alas actually my third opinion for surgery. The second opinion doctor was all gun ho to crawl around in my head with his scissors, but I did not trust him and there was something amiss with his clinic and him. After his opinion and his appointment I went back to my GP and ask to get a third opinion from OHSU after I read about their TN and pain managment clinics. It was crushingly numbing to be told surgery would be a bad fit for me and would not whisk away this horrible pain. I’m just coming to terms with it rather well and that appointment was back at the beginning of April this year. Certainly i hope everyone can be a canadit for any surgery, injection, or nerve blocker and be successful and not have to take any medication afterwards and of course be happily and blissfully pain free. I do want everyone though to be carefully selected for these procedures and not have any procedure that may or will cause more pain as they were not patients that would benefit from these. Any hoot there’s my doctors reasons as to why no surgery blah blah blah is good for me. Hope that explains correctly to you and have a pain free day.
Hi Kari- do you know why they feel you are a poor candidate? Do you just have pain on one side of your face? Have you sought a second opinion. Not impressed with my neurologist and may for hitting the road for a new one shortly.
Christine Larson
Kari, my Nuero said my TN may be linked to the Autoimmune problem I have. At the moment my TN is in remission and my Autoimmune is under control with steroids. There may be hope if the Autoimmune gets under control the same may happen with the TN.
I find it very interesting that so many of us on this site have autoimmune disorders. I would like to see a study on this.
My Rheumy did not think there was a connection as he had not come across it before,but my GP and Neuro thought there was as both conditions began within 6 weeks off each other.
My rheumier never thought anything was connected, that’s why I quit seeing him.
Mine started as tooth pain, ruled out by two dentists. But they said I did have a filling close to the nerve and a crown there that had been done by a dentist that has caused problems for other people. I figured out the TN by looking at an anatomy picture. Went to a neurologist who confirmed it but knows very little about TN and is somewhat of a jerk. My blood work showed an elevated "something" so he had me see a rheumatologist. I had an autoimmune problem when I was pregnant. The rheumatologist said it is something we need to monitor but I don't have any other symptoms other than now my joints have started cracking every time I move, but I feel like it has something to do with this. I really believe if we all put our heads together we can figure this out, there are a lot of really intelligent people here!
Shawnamohana – if you haven’t already, I’d suggest a reading of “Striking Back – The Trigeminal Neuralgia Handbook”, available from Amazon. As an investigation directed to “figuring this out”, it’s one of the best. Our Face Pain Info tab on the menu above is a shorter excursion into the same territory.
Regards, Red
Saw a surgeon here in Indianapolis today. He completely and totally discounted the theory of tooth pain being the signal or direction to TN surfacing. My tooth pain let to my diagnosis. What started as tooth pain led to the striking, shooting, burning nerve pain. He is discounting the episode I had this week and thought it was just related to my tooth. Dentist saw nothing on my x-ray and wouldn't touch me! The surgeon is looking for more traditional TN pain before considering surgery. The breakthrough pain I described this week was NOT typical TN pain and therefore he discounts it. He kinda made me feel like I was crazy. I am being very proactive with this thing and a trip to the surgeon was probably pre-mature. I don't want to be out of my mind in pain and on drugs before I consider the surgical option. Will find me another surgeon.
Thanks for your response back. I am quickly considering surgery. I am working and I am having trouble with word retrieval. I have made mistakes and I am tired. The surgeon I went to today wants me to undergo the traditional approach with meds before considering the surgery. I naturally want a quick fix but too many around me say to wait and be patient. I just still cannot believe I have this. Not taking it well....
Kari said:
Hi Christine
Thanks for asking on why my doctors think I'm not eligible for surgery. For starters my doctors think my body might be attacking its self and it would be the nerves that have to do with TN. This only a theory though but there is evidence that suggest this along with my family history of auto immune disorders and diseases. The next is mine is type two and since surgery is less affective for type two they don't like to do this. Also both doctors think surgery, nerve blockers or injections will end up doing more harm and damage than good. Lastly my age has something to do with it. I can remember fully the reason on this. I trust both of my doctors on this, my neuro has experience with TN and OHSU has a clinic for TN that is known for being one of the best for the west coast. OHSU alas actually my third opinion for surgery. The second opinion doctor was all gun ho to crawl around in my head with his scissors, but I did not trust him and there was something amiss with his clinic and him. After his opinion and his appointment I went back to my GP and ask to get a third opinion from OHSU after I read about their TN and pain managment clinics. It was crushingly numbing to be told surgery would be a bad fit for me and would not whisk away this horrible pain. I'm just coming to terms with it rather well and that appointment was back at the beginning of April this year. Certainly i hope everyone can be a canadit for any surgery, injection, or nerve blocker and be successful and not have to take any medication afterwards and of course be happily and blissfully pain free. I do want everyone though to be carefully selected for these procedures and not have any procedure that may or will cause more pain as they were not patients that would benefit from these. Any hoot there's my doctors reasons as to why no surgery blah blah blah is good for me. Hope that explains correctly to you and have a pain free day.
Christine said:Hi Kari- do you know why they feel you are a poor candidate? Do you just have pain on one side of your face? Have you sought a second opinion. Not impressed with my neurologist and may for hitting the road for a new one shortly.
Christine Larson