My pain is out of control. I have ATN. Was having good luck with a compounded cream. My ATN started with questionable dental work on tooth number 31, which was eventually pulled.
Tooth number 30 was damaged when it was pulled. This tooth happened to already have been an rc tooth. People into holistic dentistry tell me that this tooth might be contributing to my ATN pain. In addition, during the entire dental mess, not only did I get ATN, but I got Sjogrens Syndrome…an autoimmune disease. Holistic dentistry folks say rc teeth can cause AI illness AND possibly TN pain. Well, I got both working with idiotic dentists. Anybody explore the option of removing rc teeth in their ATN side of their face? BTW, I had a dentist just poke around at tooth number 30 and this is when my pain got out of control. This was about three weeks ago and hasn’t let up. Thoughts?
Thank you.
I can’t edit…but I still have tooth number 30. It got beat up when 31 was pulled. Tooth 30 is an rc tooth. The dentist poked at it three weeks ago, and it flared my ATN pain very badly…I’m still in bad pain. Considering removing it, but don’t know if this is too drastic and don’t know how I would prepare for this dental work…when just poking it has caused me big pain.
Am I using the wrong terminology? Yes, it probably is a Trigeminal nerve injury. One doc says ATN, one says facial neuralgia pain…it’s all pretty much the same to me.
I am afraid to have this tooth examined. The old crown was beat up badly when tooth thirty one was removed.
I need the crown to be removed from thirty to examine the tooth on 30. One dentist did this and I’m still in agony.
What is the best way to do dental procedures when you have ATN or trig, nerve injury???
Nomad,
This is something that I have been spending quite a bit of time thinking about. I had a tooth root canalled a year and a half ago hoping to rid myself of pain but of course it didn't make any difference because it wasn't the tooth in the first place. In fact, there was nothing at all wrong with the tooth in the first place. Knowing now, what I do about rc's, I would have just had the tooth pulled.
This article covers a lot of what I suspect. I can't say I believe the statistics given about cancer because the majority of adults probably have at least one root canal so it would be safe to assume that most adults with cancer have root canalled teeth as well. Also there are millions of root canals walking around out there not causing anyone any problems.
http://articles.mercola.com/sites/articles/archive/2012/02/18/dangers-of-root-canaled-teeth.aspx
What does make sense to me is that leaving something in your body that is infected can only lead to more problems. It does make sense. And then when I have this "dead" tooth in my mouth that hurts every minute of everyday, directly on or under the tooth and radiating out from it in all directions then I really start to wonder.
If I weren't so terrified of the dentist I would probably have it pulled at this point. It is in the back and will likely need to come out one day. My fear now is that if I have it pulled it will hurt even more or some type of damage may be caused.
I also wanted to add that I am also coming up against the ATN or nerve injury thing. I had pain before any dental work. I have never had an injury, been in an accident or had surgery.
I met with a new neurologist who again has said that I don't have ATN, that I have neuropathy. As far as I can tell these terms overlap each other.
I think the time that it is important is in treatment. I have been told that invasive procedures used for TN are NOT to be used for what I have. That they may not only not help but may make things worse. I suspect that a nerve injury is to be treated the same way with same precautions. And that medications seem to be our only option.
And yes, only see a dental specialist--an endodontist. I am frightened to death to have ANYTHING done in my mouth. Cleo has really good knowledge about this.
My doc calls my pain Atypical face pain,or could be CRPS. Either way im not sure. What i would like to know is why doesnt an extraction or R/C cause ATN but TN.
Cleo said:
Stay away from the holistic kooks! Find a ENDODONTIST and have them check the tooth. If it needs to be extracted you will need an oral surgeon. overfilled rootcanals and or extractions can cause trigeminal nerve injury. Not ATN.......
Trigeminal nerve injury or ATN seem super close in meaning…right now I’m not going to worry about that.
During my dental work fromSatan’s Dental Clinic, I developed the facial nerve pain And an auto immune disease. So… The tooth they worked on was rc’d, but I had the tooth removed shortly afterward. There is a rc tooth next to it.
That rc is super old, so I doubt it is overfilled and there is no overt sign of infection.
I have read some older books about this controversy, but they are not written very well. However, the documentation of experiments is interesting…the idea, for example, of putting a rc tooth in a rabbit and the animal gets the same disease as it’s human owner and then the rabbit often DIES. WTH!!!
what auto immune disease did you get. i have underactive gland,but have had thyroid issues way before my tooth issue..
I got Sjogren's Syndrome.
My lupus was in remission for ten years. Tests all very good.
In the middle of the dental mess in which I got ATN, I developed symptoms of Sj. Syn. and lo and behold, I was tested and had it.
Shortly after that, my Lupus came out of remission.
I #$@! hate dentists.
Seriously, since my terrible experience, I have heard of many other weird/difficult/traumatic stories from people after going to the dentist. I know my original dentist made errors and then it is extra bizarre that when I went for help, more errors were made by other dentists. NEVER go to a dentist desperate for help because you are in bad pain. Seems many of them will do work that is possibly unneeded.
Did I mention I had no pain initially? I wanted an onlay replaced...and I entered a circus of mistakes. The tooth had an onlay because it had a little crack in it. That tooth wasn't initially rc'd, but one dentist convinced me to get it rc'd. Mistake. I ended up LOSING THE TOOTH....AS ONE OF MY LAST DENTISTS INSISTED IT WAS THE TOOTH CAUSING MY NERVE PAIN. WRONG!
The very last guy I went to was an oral surgeon/M.D. He APOLOGIZED for the dental profession and told me that I now needed to go to a NEUROLOGIST. By then, it was too late. I had ATN and of course, I'm kinda wondering WTH happened for me to get all this Autoimmune stuff too.
I tell everyone to make sure your dentist has good training, the latest equipment, a good reputation and then get a second opinion before having any out of the ordinary procedures.
I don't know what to make of the root canal controversy....but very generally speaking, I think they should be avoided if it all possible.
Nomad,
I understand your fear and frustration. I think there a lot of things that are wrong with dentistry. After having ATN and meeting all of these wonderful people with all of these horrible experiences I can safely say that I dislike and distrust dentists even more.
I do not understand why there is this giant gab in medical training with teeth. They are vitally important to your overall health yet they treated as a completely separate entity.
From what I have seen nerve injury is far more common then any dentist would admit. It is impossible to find a dentist to trust. I thought I had a fantastic, knowledgeable dentist. But when all of the pain started for me almost two years ago, and with a past of TN, that dentist still talked me into a root canal. Part of my problem was that I would have done anything anyone told me to get out of pain.
I haven't been in the dental chair since then. A year and a half ago.
J-Jane....I hear ya! My new dentist wants to do work on the tooth next to the one extracted. She examined the tooth and left me with weeks of extra pain. She never explained why in the world she wants to or needs to work on that tooth. However, she is about to leave the dental insurance I have with her ... so soon I wont have coverage and it is obvious by what she says to me that she is concerned she'll lose me due to the lack of coverage. AND she keeps on forgetting that I have nerve pain. I'm searching for a new dentist. She doesn't get it. It's NOT the money. Sure, getting hurt, permanent pain AND BEING RIPPED OFF IS VERY VERY BAD. But, I would have gladly paid extra money not to have been hurt. Searching for a new dentist...but I really don't like this profession. My husband never has. I still get my teeth cleaned, but avoid any cleaning in my damaged quadrant. It took me a long time to convince him (my spouse) to get cleanings. Seems we are both avoiding treatments. Any treatments will have to be seriously reviewed and at least double checked with second opinions. They do a terrible job of policing (for lack of a better word) themselves.
Cleo,
I understand the difference between the two and obviously the treatment of each is very different. What I don't understand is the "neuropathy" diagnosis for me. I do not have a nerve injury but both a neurosurgeon and a neurologist have said I do not have TN. Even if I did have TN it would be classified as Type 2 so I don't feel my options for treatment would differ. I have been told to stay away from invasive procedures that treat Type 1. So I guess the old diagnosis of AFP applies to me then? I find the entire thing very confusing.
Also can having this "neuropathy" or whatever it is make my facial nerves more sensitive? or more prone to agitation by dental work? Because I will tell you that ,even though I had nerve pain in my 20's for no reason and then it came back a year and a half ago, the moment the RC was done my pain exploded. It was localized around the teeth on my left side and immediately after leaving the dentist it went up to my jaw, cheek and ear. What is that about? I was back in that dentist's office numerous times in so much pain and he just shook his head and kept saying the RC was successful and the tooth is dead. Luckily I had been on Amitriptyline the first time around so I knew to ask for it. After the RC I knew what I was hoping wasn't true--that it was TN.
But then on the other hand I haven't been back to the dentist since and about six months ago my facial pain started on the opposite side. So I am at a loss over the whole thing.
I agree that none of these invasive procedures should be done by a dentist. The reality for some people though is that the price tag of seeing a dental specialist is far too high. That is why I let my dentist do it. It was still crazy expensive. I spent about $3000.00 on that tooth all together and it took me a year to pay it off.
Cleo said:
Trigeminal Nerve Injury and Classic Trigeminal Neuralgia are two separate conditions! Injury to a nerve during a dental disaster isn't causing the nerve in your brain to become compressed. More accidents occur when the general dentist attempts the procedure that should be done BY an oral surgeon, enod, or perio in the first place!!!!! The general dentist in the USA does not make the income of an expert.
Good point Cleo. I just felt so defeated after the RC and everything else I went through before it with medicated fillings and pain pills and antibiotics. Truth be told I guess there could have been a nerve injury before the RC. Can I ask you another question? Months before the RC I had a filling put in that tooth then had the filling removed and a medicated filling went in. The pain just kept getting worse. Is it possible to damage a nerve during those procedures as well?
Cleo said:
Jane, You don't really know if the root canal failed unless you get another opinion on it by a root canal specialist. .
Clarification: I don't have compression...
I always thought ATN meant no compression? Atypical Trigeminal Neuralgia. I do not have compression per MRI and MRA. So, I feel that saying, in my case Atypical Trigeminal Neuralgia or facial neuralgia are close enough. I would never say what I have is TN or Classical TN. Saying ATN changes it for me. It is ayptical in that it isn't typical. There is no compression. I very strongly suspect that trigeminal nerve was damaged from dental injury and left me with facial neuraglia due to injury in the trigeminal nerve. I don't believe I have said anything weird or "off." And yes, I was fooled by a general dentist, who pulled my tooth and it should have been an oral surgeon. But, the trigeminal nerve was already damaged by that point. It probably didn't help matters that I went to another dentist who was a greedy idiot. What happened to be at the very first dentist (I did not have pain originally) was inappropriate, BAD dental work. But, that work was work that would be ok for a dentist to perform....but they did a horrible job, made mistakes and damaged my trigeminal nerve leaving me with great, permanent pain and on a quest to find other dentists to help me. I thought at the time, I had some sort of dental problem. It wasn't until I went to an oral surgeon/MD who apologized for the dental profession and told me to see a neurologist that I realized that I had not only been damaged by the original dentist, but continued to be hurt and ripped off by subsequent dentists. And it wasn't until I saw this oral surgeon/MD that I realized that I didn't need a dentist, but I needed a neurologist because I had nerve damage. The original dentists and the subsequent dentists MAY have realized that I probably had nerve damage, but no one told me this or told me to get checked out by a neurologist. Instead, they did more work...some of it inappropriate for a dentist to do in the first place (needed an oral surgeon) and probably hurt me even further. I do NOT think much of this profession and distrust it with all of my being. My apologies to those in this profession or who have relatives in this profession. Surely, there are good ones out there. But, I ran into several horrible ones and I have since heard several frightening stories of unprofessionalism and dishonesty.
As a side note....I have heard that it is possible that all the tapping from a crown can actually hurt the trigeminal nerve. In my case, the orginal dentist, took months to put in MY crown. I was at the dentist constantly for the same tooth. AND she put permanent cement on this crown that broke within seconds of putting it in. It took an hour to remove it...constant drilling and what not. I think that tooth was beaten to death. Then, her partner, put a post in this tooth, that was cracked. It did not have a root canal. I found out that a post is not to be put in such a tooth. Lots of drilling and tapping.... an excessive amount. For me, this is when the pain started. Before the root canal. Then, problems with the endodontist and rc and problems with the tooth removal. All different people. A complete circus. It is SICKENING.
Nomad,
Trigeminal Neuralgia, whether it be type 1 or type 2, is caused by a compression. The thing is that sometimes even if there is a compression it won't show on the MRI or MRA. What I have fallen into is this "neuropathy" or AFP which from what I can gather mean nerve pain with an unknown origin. It could be an injury or some other malfunction. I think it basically means they don't know. Lol. I am also the fourth person in my family with TN (or whatever) so I am really confused on why or how they can say it isn't TN. In the long run I don't much care what it is called.
Now the confusing part for me is that some DRs, like Dr. Casey, say that MVD "can" be successful for Type 2 Trigeminal Neuralgia with lower success rates. But other DRs say not to have ANY invasive treatment. That medication is how Type 2 is treated. I have discussed this before on this forum. I have heard from people that have Type 2 TN and have been left in more pain after invasive treatments.
In your case it does sound like a nerve injury from the dentist. In which case you wouldn't have a compression and treatments for TN do not apply to you. I think with nerve injury there is a chance that it can heal so that may be a really good thing for you.
And I'm sorry that I hijacked your post!
Have you tried any medications other than the compound cream?
JJane...No worries. All these discussions are helpful and I suspect that I have been holding in my anger toward these dentists for far too long. After two years...It is nice to let go.
Thank you for that explanation regarding the different terms. It is clearer to me now. AND I see why things are so confusing. They surely are confusing. So, Type 1 and Type 2 are both caused by compressions. I did not know this.
But still a little confused on the Atypical Trigeminal Neuralgia. When folks say this it mean of "unknown origin?" And does "atylical trigeminal neuralgia" indicate compression????
I think after reading posts here...best if I say"facial neuralgia." Facial neuralgia likely caused by $%#@ dentists? I wonder if I can get that put in the PDR? LOLOLOLOL!!!!!
I tried lots of meds by mouth before doing the compounded cream. I had too many side effects and for the most part switched to the compounded cream. HOWEVER, I do take one med (actually two now) by mouth.
I take Desipramine tablets as well as use a compounded cream. It is Norpramin. It is much like Elavil/Amitiptyline. My doctor started to put me on Amitriptyline, but I asked for Desipramine as I heard it has less side effects. I take a low dosage.
Of late, I'm having bad pain in my lower neck/back of head. Neuro thinks it is Occipital neuralgia. My neuro just gave me Bacolfen...low dosage as well. Too soon to see if it helps.
Since I take Topamax for migraines (aka Dopamax for it's cognitive dulling), I'm not too thrilled to take any meds that lower cognitive function, so I'm not crazy about the idea of increasing the Desipramine, but will if I have to. I gained a few pounds after starting this medication and it makes me a little sleepy, etc.
My med routine:
1. Compound cream containing Gabapentin, Lidocaine and Capsaicin
2. Low dosage Desipramine ( A trycyclic tablet by mouth once a day)
3. Low dosage Baclofen (A muscle relaxer tablet by mouth twice a day)
I'm almost positive I will need to increase either the Desipramine or Baclofen soon.
I hope my nerve injury heals, but I have not seen any indication of this. My neuro says that MVD's are not to be even considered it no compression is found in an MRI.
What do you call your facial neuralgia?
I call it hell on earth. lol. "Neuralgia" is caused by a compression so Type 1, Type 2 and I think Atypical all fit that. I think I will call it Atypical Trigeminal Neuropathy. So ATN still fits.
That is awful that your nerve pain is spreading. I have dealt with the same thing. What started in one tooth is now bilateral in the bottom two branches. I also have symptoms of Glossopharyngeal Neuralgia with my tongue, back of mouth and tonsil area.
I am doing really well right now though. I saw a new neurologist about a month ago and he switched from Amitriptyline to Nortriptyline. It is working really well. The side effects are less, its a lower dose and I am getting fewer flare ups. I also worry about the increasing of meds. At first 25mgs Amitriptyline worked but I gradually went up to 60mgs in a year. Now down to 50mgs with Nortriptyline.
You are right about the MVD. Some DRs will attempt it for Type 1 without a compression showing bc compressions don't always show on MRI or MRA. For our type of pain I keep getting told to stay away from any invasive procedure. So it looks like medication is the only real treatment available for us.
Many thanks Cleo. I think more than one thing was done improperly in my case.
"2. Negligent Posts
A post is properly used to provide increased retention for a crown when the tooth has inadequate tooth structure to hold the crown. The failure of a tooth with a good crown and a good post is not below the standard of care. The most common problem we see with posts in dental malpractice involve poor positioning (not parallel to the canal) and oversized posts, both of which place the tooth at increase risk for tooth perforation and fracture. Think of the negligent post acting like a wedge that directs destructive forces into the tooth each time you bite down."
I think the post was done incorrectly and is part of the problem.
My crown was placed in a tooth that was NOT a rc tooth. However, it was placed in a cracked tooth with a temporary crown.
Just prior to this in the same practice, the dentist put on a crown that didn’t fit with the permanent cement. I bit down and cracked it within three minutes.
It took her a hour to get it off. I had moderate pain after this. The same dentist had worked well over a month attempting to put a crown on for me. She thought everything was ok, and used the permanent cement.
Then her partner put the post in. This was before the tooth was rc’d. She seemed aggravated and rushed. The office staff was starting to talk…I was there constantly with two dentists struggling to put on a crown. After she put in the post…that was when the pain became outrageous.
I left that place and went to another dentist who said I needed a rc. The endodontist left an open canal. The endodontist wrote in my chart that he told me about the open canal. nOT TRUE. My husband was in the room for about 90% of the time and he said it was never mentioned. Then he was with me at the end. I think I would of remembered that and hard to believe it was said in that tiny period of time my husband left the room.
I didn’t know it at the time about the open canal…I wanted to know why I still had pain. I went to an oral surgeon who took an xray and showed me the open canal. I also developed a bump next to the tooth, but oddly it went away after a few days.
The pain was unbearable and I went to a holistic dentist. And yes, he did take out that chart in your post.
He said I had to remove the tooth. He removed the tooth and put in a graph immediately. I have a history of lupus and told him. When removing the tooth, he damaged the tooth next to it. The graph activated my autoimmune stuff and I had a relentless fever. He put me on a nutso about of antibiotics…saying that I had an infection. He also accused me of never telling him about the lupus. However, I discussed it openly and put it on my intake form.
My rheumie took a crazy about of blood work looking for infection; none was found.
I went to an oral surgeon who was also an MD. He removed the graph. The fever abated immediately. He also took a biopsy. No infection was found. He apologized for the dental profession and told me to see a neuro immediately.
All the dentists gave me antibiotics…sometimes two at a time. Most gave me some Percocet too.
That was two years ago. I’m on a variety of meds to control the pain and take Percocet for breakthrough pain. My tooth that was damaged by the holistic dentist is still an issue. A dentist explored it recently, and it left me with outrageous pain for three weeks.
My life has never been the same. I push hard to fight depression.
I was told by two attorneys…that I waited too long to inquire about suing. Also, that I went to too many dental professionals to get help and that too many seem to have made errors; this would cause all of them to point fingers at each other. That I clearly was a victim of medical malpractice, but suing a dentist is particularly hard. It would have been easier for them had I seen an attorney immediately when the pain started. Instead, I was desperately trying to get the pain resolved seeing dentist after dentist thinking at first it was a dental problem, and optimistic that it would stop
I find it hard to trust dentists these days.
Having a tooth RC can cause severe discomfort and pain for months after, generally the patient still feels if something else is wrong. They will make many visits to their dental practitioner and may undergo further dental work which is not always necessary.
RC work can cause damage to surrounding nerves and tissues if the procedure is found to be troublesome, it is important the patient understands the healing process and time-frame associated with RC or an extraction of a tooth.
I have had several root canals and now they have all been extracted, the most important thing I have now learnt regarding all my years living with TN is... you must allow time for your body to heal.
A tooth extraction will often cause several weeks, even months of pain and discomfort. You will feel pain and discomfort in surrounding teeth which is quite normal, in some cases the pain is so severe other damaged may have been done.
It can take upto 8 months for a properly healed extraction site, nerves to be settled and jawbone to have fully filled in. This is where some patient's ofter have other dental work done which sometimes is unnecessary.
I myself can remember suffering facial pain and headaches as a teenager, many dental visits I can remember from the age of 10. But it wasn't until I had my first tooth extracted that I properly suffered Trigeminal Neuralgia, this then snowballed into other teeth being extracted over the years due to the excessive pain on both-sides of my face.
My experience is, dental work such as root canals and extractions can cause facial pain, Trigeminal Neuralgia, sometimes long term damage can be done, but often the pain will subside (this can take months).
In case's where chronic TN is present, I feel the teeth are pain conductors and lead to unnecessary dental work. Most professionals will say not to have anymore extractions due to other complications and prolonging the healing process (this I find is true).
After so many RC's and extractions I am still left with TN/ATN type 1&2 on both sides of my face, I still have pain at each extraction site even though the teeth ain't there.
All I can say is, dont have anymore dental work done, no extractions and no RC's (wait at least 6 months and see how you are then). I know it will be hard, but please be brave and hang in there.
Cleo...Thank you for the little grin that came with the words "Dental Hall of Shame." My DIL was seven months pregnant and this all started with an onlay falling off tooth 31. I wanted it replaced because I was going to help with the new baby (our grandson) in another city. The onlay was there because the tooth was cracked. The dentists at the Hall of Shame, wanted to put on a crown instead of an onlay. It took months of work...but still no crown. Then, they put on a crown with permanent cement and it cracked immediately. It took an hour to remove that. Then, I started to have some pain. I came back about week later and the owner of the group, put in the post. after this, she she went on a three week cruise. She put the post through a temporary crown into a tooth that was cracked. (No rc at this time) This post placement occurred approximately 2 years and a few months ago. Then, I went for a second opinion and was told to get an rc...then more problems. The OS who is also an MD was the last guy I saw. He was very careful in his language when he spoke to me. He did apologize for the dental profession, but made sure he never used the words "nerve damage." But, it was somehow clear to me what he was saying. He said that I needed to stop seeing dentists, and he was sorry for the dental profession and their behaviors. He said his father was a dentist and he doesn't recall things being like this in the past. And that I needed to now see a neurologist, who might be able to help me. I have thought of seeing him again to get his opinion on tooth number 30 which was beat up when the holistic dentist removed 31.
Dallas.. My work was about two years ago. But, YEP....perhaps waiting would have helped. I don't think fully as I think the first dentist who took over a month of constant drilling and tapping on the original effort to put in the crown and then over an hour to take off the crown with the permanent cement, caused damage...she started the damage of the Trigeminal Nerve. However, I had no idea about this. No idea about trigeminal nerves. I started to complain about pain, but NO ONE at this place took me seriously. Then, the owner at the Dental Hall of Shame did the post. OMG! The pain I had was out of this world. She suggested afterward, that I might need an rc, but to wait. She did NOT explain herself. I think she told me to wait, because she knew I had nerve damage, but she didn't say that. She didn't say howlong to wait or why. She did not offer any medication. She went on vacation afterwards for three weeks. I had no idea what had happened, but was left with crazy pain. I sought a second opinion from a well respected dentist. Told him the entire story. Oddly, he did not offer any notion of nerve pain. I freakin hate these guys. He said I needed an rc. Went to the endodontist and told him the whole story. He did not mention anything about the possibility of nerve pain and told me an rc would stop my pain. So, of course, ASAP, I booked an rc. He left an open canal and didn't tell me, yet put it right in my file that he told me. So....I had to go to yet another dentist to find out what I needed to do from this point forward. I think I was already in trouble with all the friction from the first dentist and probably the post sealed the deal and wrecked my chances of this nerve coming back. With each dental "professional" (It kills me to say that or write that word) things only got worse.
The last guy, who removed 31, damaged tooth 30. I did not know that in almost all cases, a dentist should not remove a tooth. It should be an OS. Certainly, in my case with all these problems, great pain, having an autoimmune dx...etc. It should have been an OS. Anyway, tooth 30 is an rc tooth. The crown looks like it went through a blender. When he removed 31...it got beat up. My new dentist took the crown off and poked around. Said she had to do a little drilling (in the near future/another appointment) and replace the crown. Just the poking caused me three weeks of intense pain. She did NOT explain why she had to do some drilling, but that is so NOT GOING TO HAPPEN.
I might just let it go. I will ask her why she feels she has to do some drilling, but I'm not sure the answer really matters. She is so NOT going to touch that tooth. I don't really trust her either from experience and certain observations.
I get my teeth cleaned three times a year, avoiding that area of my mouth and am not sure if I'll be doing ANY dental procedures.
Good dental hygiene, no sugar and avoiding dentists is my strategy. Plus, working with my neurologist for pain management.
BE CAREFUL WHEN GOING TO THE DENTIST!