Dont treat dental injuries with classic tn procedures

General General TN & GPN (Old Site)
1

While someone injured by a dentist (or any other problem that results in an injury to a facial nerve) may technically have TN, it is NOT the same version of TN that someone with blood vessel pressing on nerve problems or even the ATN version of the same. A person injured by a dentist has neuralgia on the trigeminal branch of the nerve and trying to treat it with gamma knife, MVD, botox, nerve graft, cutting, burning, freezing will make you worse. You may think you are getting better for awhile but the pain will come back with a vengeance. There are doctors out there who will tell you they can help with these procedures BUT THEY WONT!


Unless you are able to fix the nerve immediately after it happens BY A DOCTOR WHO UNDERSTANDS THESE KINDS OF INJURIES vs treatments for traditional TN, the only solution you have is drugs.

I could come up with a long list of people who ignored what their doctors (neurologists) told them to leave it alone, they didn't, it got worse, and some committed suicide because they couldn't take the resulting pain. You can dig thru this board and find people who didn't heed the warning are worse off for it. It SUCKS big time but you know what you have after the injury, you don't know what is going to happen after you try to treat it with wrong procedures.


I was injured by a root canal, and I was told by doctors from coast to coast to LEAVE It alone. A friend who had dental damage with the exact same initial pain that I did, did not head the warnings and every time she did something, she was worse and swore she would never do it again. She did and eventually committed suicide. The stress of always looking for the next fix and the devastation of realizing that she made it worse stressed her out and made the pain worse.

Its hard to not be swayed by hearing people get better with MVD or Gamma Knife getting better...they don't have what you do. LEARN THE DIFFERENCE, If you let a doctor do this to you, it is not the doctors fault for making you worse....it is yours for not understanding the difference. I got off of this board (thought my account was deleted but it wasn't because I was tired of hearing the horror stories. I sadly reached the point where I couldn't deal with people who didn't listen or learn the difference. I'm still there but because of stories I have again heard by people who are worse off....I decided I had to come back and put in my two cents....and that is all it is....but coming from a person who has researched her problem for 9 years, been to God knows how many doctors and have seen people get worse and either not understand or blame the doctor. SADLY, YOU ARE RESPONSIBLE FOR YOUR HEALTH CARE. There are too many doctors who are glad to take your $$ and use you as a car payment. If they mean well, they are incompetent and dangerous.

2

Go to the http://facepainhelp.com/ website with a board similar to this and read the post with this same title. Listen to Dr. Dennis (from FL) who treats both types of problems. She is another ethical doctor who doesn't treat patients out of ignorance or for a car payment. She understands the difference. She is just one more voice of reason and has the patients well being as her primary concern.

3

I partly agree with what you have to say, but its quite wrong for you to state...

''LEARN THE DIFFERENCE, If you let a doctor do this to you, it is not the doctors fault for making you worse....it is yours for not understanding the difference''

Patients are not doctors, we are not professionally trained like doctors are. The doctors must understand the patients symptoms and make the necessary decision to treat them given their correct knowledge and training, if all goes wrong, then YES! it is the doctors fault.

When you mention about being injured by a dentist or other facial injury, this will not cause TN nerve compression. I have to disagree with you, as each specialist I have spoken too all say different as to the reasons why!.

Using the term 'being injured by a dentist' seems alarming, you certainly DONT have to be injured by a dentist to suffer Neuralgia or develop TN / ATN etc.

Any simple dental procedure can cause neuralgic pain, it doesn't mean there is damaged, it means the body isn't bullet-proof. If you are going to have teeth drilled, tissue cut and nerves killed, the body is going to suffer and will adjust in the best way it can (no two cases will ever be the same).

However! I do agree with the term 'LEAVE It alone' give it time the body can heal itself. The patients that go hunting for help as the pain is so unbearable will end up with their Doctors/Dentists having to do something. The health professionals that say leave it alone may be correct, but everyone is different and all cases are different (there are times where the patient does need help/treatment).

I wish I never had my first tooth extracted, but it had to be extracted due to a failed root canal and had broken due to decay (this was my Dentist's opinion and was the only option). In the world we live in today we all eat the wrong foods, decay is a modern example of how the human body cannot cope with the simplest of tasks, so why is this the patients fault ?

The human body is an amazing machine, but it is also full of defects. Trigeminal neuralgia is mostly a result of trauma to the nerve or can be from an infection, so you cant really say its the patients fault because they suffer TN pain.

Can we say all cancer suffers smoke ?

4

Agree to disagree on some of your points but when you hear from people who have been thru what you have been thru and you let a doctor do whatever .... and don't take the time to understand it and/or get a second, third, fourth opinion.....you are the one who let the procedure happen. The doctor who made the recommendation won't live with the lifetime of pain, you will. My friend listened to what doctors told her what she wanted to hear and some of them just didn't make sense. She was desperate and gullible. She is now dead.

I'm sorry that I believe that you are responsible for your own health decisions but you have to know that doctors are not God, they guess or speculate because they don't know for sure, and some unfortunately will do anything to make a buck. Its sad but you can't just take the advice of one doctor because they tell you what you want to hear.

There is a wealth of information on the internet.....most importantly patient stories. You should not read them with blinders on.

5

Part of what makes TN or ATN or AFP or AO or Nerve Damage so difficult to navigate is the lack of information. Most of us are out here treading water by ourselves. Many of us have a difficult time just being diagnosed properly. Every single one of us is different in our experiences that got us to where we are now.

I have seen two dental specialists, my GP, a neurosurgeon and a facial pain neuro. I still don't have a proper diagnosis. No compression showed up on my MRI/MRA's but who knows if one is there or not. I had a root canal early into my journey with this pain that has grown in span and intensity over the past two years. But did the root canal make it worse? Or would it have gotten worse anyway? I have no idea. I'm now bilateral anyway with no dental work on the second side. The neurosurgeon says ATN and he can't help me. The neurologist says AFP and meds. So who knows really. It is more a process of weeds things out then it is gaining insight. The more questions I have, the fewer answers I seem to get.

I agree with what you have to say 100%. But it has taken me almost two years to come to that opinion through asking questions, seeking professional opinions and a lot of reading, writing and chatting with my fellow TNers out there. I could have made many mistakes along the way and not had known until it was too late.

When people are sick they do generally turn to DRs for help. We do not assume that DRs don't know what there doing. Yes, we are in control of our own decisions but without knowing the difference how can that hold up? And living in Chronic Pain causes a lot of stress, anxiety, panic and depression. I was not in my full, right mind when I was in dire pain everyday for months on end. I begged a dentist once to pull out my tooth and cried in his office. Thank goodness he didn't! People do desperate things in desperate times. My point is that we want very badly to believe any solution to our pain that is given, any way out of this horror. We are vulnerable.

That's if you can even find a DR that knows anything about it at all except for outdated beliefs of a one size fits all mold. And I am a lucky one so far. I have found a medication, actually two now, that work for me. I am able to function very well and lead a happy, full and rewarding life. What if I was still in dire, constant pain now? Two years later and a hundred times more intense. Yeah, I would probably pretty "desperate and gullible". It is called the "suicide disease" for a reason. The pain is one of the worst known to man...bad enough that some people would rather die. I would think because they see no way out of it. Which is horrific and true for some of us. That's awful and so so sad. My heart goes out to every one of you. I wouldn't wish this type of pain on a single person.

Luckily, with the internet we are all able to come together and are learning what works and doesn't--more through others' experiences then through our own. We are becoming our own DRs, our own specialists and our own best advocates. What you have to say is important and hopefully it helps somebody see the truth in front of them. We need to remember to be compassionate to one another. I don't know about you, or anyone else on this board but this has been one of the hardest things I have had to deal with in my entire life and that is saying a lot. TN, or whatever it may be, is not an easy disease (or injury) to navigate your way through. And it is mostly through others' mistakes that we learn so much more about what to do and what not to do.

6

All of my comments and beliefs come from a dental injury perspective....that is what I unfortunately know about. The basic theory that I have is that if you weren't in pain before you went to the dentist and are afterwards, its safe to assume it is a dental injury. If your pain is in your teeth, especially one that has been worked on, its safe to assume that it is a dental injury. The material that caused my damage can create problems immediately or sometimes months to years later. The formaldehyde gas escapes the confines of a porous tooth and can (and does) leach out into surrounding tissue or bone and do damage that takes a long time to rear its ugly head. Most people don't make the connection if time has gone by.


There is a doctor associated with this organization that told myself and two other dental injured patients that he had a theory that the reason that some people have pain from a dental procedure and some don't is because some have a blood vessel pressing on a nerve in the trigeminal branch. Pardon my bluntness but that is BullCrap. People who have pain from a dental procedure is because something went wrong at the dentist. Those kind of comments coming from a doctor who we believe we can trust is what drives people with dental injuries to have microvascular decompression surgeries. It is logic that doesn't make sense and no matter how many people who have been helped by MVD, it isn't because a dentist caused a nerve injury. It is that kind of crap that people need to realize doesn't make sense and should RUN far away from that kind of a doctor.

It may be difficult but you need to find people who's injuries are very similar to yours and learn from them. Don't learn from people who's situation (onset of symptoms) is different from yours....

I left this board before and asked that my account be deleted (which it was not) because I couldn't read anymore stories about patients doing things that makes no medical sense. I lost compassion for people who were making decisions based upon another people's situation that wasn't like theirs, didn't start like theirs and ended up worse off for it. And again, these are people who were injured at a dentist. I'm sorry I felt that way but I did.

7

This is from another forum. There are different treatments for some of these and what works for one is not guaranteed to work for another. Treating one like it is another can have disastrous results. There is a top neurosurgeon in the state I live in (Alabama) who understands the differences and was yet another doctor who told me that anything he does - Gamma Knife, MVD, Botox, neurectomy, ... will hurt me and my dental injury...and his words to me were "please don't let anyone else hurt you". This is a doctor who understands the differences between these types of nerve pains and how they are treated....and dental injuries should be treated with drugs until more research is done and better treatments found.

Classification of Neuropathic Facial Pain.

  • Classic Trigeminal Neuralgia, type 1, (TN1): (also known as tic douloureux) facial pain of spontaneous onset with greater than 50% limited to the duration of an episode of pain (temporary pain). TN is often caused by loss of or damage to the nerve’s protective coating, (myelin). The most widely accepted view is that myelin damage results from irritation of the nerve, usually a blood vessel that causes the nerve to be compressed.

  • Trigeminal Neuralgia, Type 2, (TN2): facial pain of spontaneous onset with greater than 50% as a constant pain.

  • Secondary Symptomatic Trigeminal Neuralgia (STN): Pain resulting from multiple sclerosis.

  • Post- Herpetic Neuralgia (PHN): pain resulting from herpes zoster outbreak (SHINGLES) along the trigeminal nerve.

  • Trigeminal Neuropathic Pain (TNP): facial pain resulting from unintentional injury to the trigeminal system from facial trauma, oral surgery, ear, nose and throat (ENT) surgery, root injury from posterior fossa or skull base surgery, stroke, etc. This pain is described as dull, burning, or boring and is usually constant because the injured nerve spontaneously sends impulses to the brain. The injured nerve is also hypersensitive to stimulation, so attacks of sharp pain can also be present. The area which is sensitive to touch and triggers these sharp attacks is the same area where the pain occurs. Numbness and tingling are also signs of a damaged nerve.

Trigeminal Deafferentation Pain (TDP): facial pain in a region of trigeminal numbness resulting from intentional injury to the trigeminal system from neurectomy, gangliolsys, rhizotomy, nucleotomy, tractotomy, or other denervating procedures. Despite the loss of sensation, constant pain is felt in the numb area(s), which varies in intensity and can include sensations of burning, crawling, tingling, boring, stinging, and/or unpleasant aching.

8

Oh I agree with you about dentists and dental injury. I have listened to so many people's terrible stories of how they ended up in pain after dental work. I am terrified of dentists now. I have also listened to many stories about unnecessary dental work because of TN pain and stories about surgeries/procedures not working and making the pain worse. It can be confusing! And I think some people are confused. I am confused sometimes for sure. There is so much conflicting information out there.

DRs do not help our situation a lot of the time either. There is complete lack of knowledge in the medical and dental fields about neuropathy. I don't understand why our teeth are treated as a separate entity and why dentists don't have to know more about the intricate nerves that connect our teeth to our bodies.

And you don't need to apologize. You have a valid concern and opinion. I just needed to add mine :) I think it's really important that we speak up with our beliefs and knowledge.

9

There are so many documented theories regarding the cause for Trigeminal Neuralgia, most of which are very similar to one another.

Infection, demyelinating diseases, or compression of the trigeminal nerve which can injure the protective myelin sheath, this is the same for TN1, TN2 and ATN. A dental procedure can still cause injury resulting in nerve compression damaging the protective myelin sheath.

Dental procedures, impinging vein or artery, a tumor, infection, disease (MS), certain chemicals, environmental conditions, ones life style, injury, accident causing injury can all cause Trigeminal neuralgia which will relate to the nerve being damage in some way.

10

I had to treat both ends of this disease. I believe my Trigeminal started in my late thirties with a TMJ diagnosis followed by years of unexplained facial numbness and pain. In between I had several root canals that had issues. Everything came to a head when I was 58. An MRI showed issues with a blood vessel and I elected for a non-surgical approach which was the Gamma Knife. It lasted one year. For some people it has lasted a lot longer which is why I chose it. I recently had an MVD which I am struggling with due to all the damage to the nerve.

Now I am dealing with the dental issues with a few extractions. A trigger area on a rear molar has extensive work and constantly becomes inflamed. So it is in my best interest to get rid of it.

First of all, I do not know when you lost your friend but I am so sorry for your loss. I read your post and cried for quite some time and thought about other fragile souls that were suffering and said a little prayer for them. This pain in and of itself can be so exhausting that it requires a very strong support system and that is what this web site provides and has provided for me. I consider us to be survivors. All of us. If we have the strength to log on we have the strength to hold each other up. We have a responsibility to never place blame on a survivor. I know you are upset. I have been too. I have elected sometimes not to send posts when I am really bad because I know it is going to pass. This disease is so rare that I do blame the opportunists that try things that will not help. So education is the key. Education is power, right. So let’s continue to give each other power and lift each other up.

11

After traveling this road for as long as I have, being turned down by doctors and pain clinics, I finally found a doctor who admitted the truth. There frequently isn't anything that can be done to fix dental injuries and doctors don't want patients who they can't fix and just have to throw drugs at. That is thanks, in part, to the DEA.

12

If I am understanding your post right, you are saying that traditional/classic TN diseases can be caused by dental injuries. There is no way that a dental injury can cause a situation that requires MVD surgery to fix it. It doesn't happen. This is the reason that I left this board before ... because I got tired of hearing peoples story about how they had these surgeries and are now worse than ever. I'm checking out again.....I'm not stressing myself out because people don't or won't understand. If I interpreted your response wrongly, I apologize. But, I don't need to stress over trying to help other people who don't believe what so many in the medical community have taught me....and others who ignored it and are far worse off for it. Good Luck to everyone. I hope you think carefully and get second, third and fourth opinions before you allow a neurosurgeon to treat your dental injury like the God given version of TN.

Dallas said:

There are so many documented theories regarding the cause for Trigeminal Neuralgia, most of which are very similar to one another.

Infection, demyelinating diseases, or compression of the trigeminal nerve which can injure the protective myelin sheath, this is the same for TN1, TN2 and ATN. A dental procedure can still cause injury resulting in nerve compression damaging the protective myelin sheath.

Dental procedures, impinging vein or artery, a tumor, infection, disease (MS), certain chemicals, environmental conditions, ones life style, injury, accident causing injury can all cause Trigeminal neuralgia which will relate to the nerve being damage in some way.

13

I think that SOMEtimes you can have dental work done and it just Triggers the TN pain...Something that was going to happen ANYway... and there are ACTUAL dental procedures that are done and they ARE done Wrong and are damaging. TWO different things... Some people start off with eye pain. Some start off with a pain on the side of their face... But most start off with a tooth hurting and then they get it looked at,,and worked on and the pain doesn't go away... and it turns out they have TN.

Some Start out with Sinus Pain. Any person who has TN and has a cold or an infection or any type of injury to the head is going to suffer tenfold, PAIN just gets magnified.

Everyone is different. Everyone must choose their own path. Lou tells it right. We must continue to Lift each other up and always , always stay educated. Learning every day , moving forward and never give up the good fight.

Stay Strong.

Min

14

No. It’s my stubborn Irish insistence that it’s my teeth. It’s not it’s my poor gum from not flossing due to fear of pain so relax . Don’t give up I fully understand what you are saying I really do. I am not going to post to not further engage your fury for a while. I am only kidding. I love your passion and I am not making light of it because many a night I have found myself in a heap on the floor.

15

Lou, if you are talking to me, it wasn't your post that turned me away. Im sorry for what you have been through and who knows if it is dental. Every time this issue comes up it turns into an argument. Dentists can drill into the sinus area, can overfill root canals into the sinus area, can pull teeth whose nerves are in or close to the sinus area. It doesn't mean that they have a blood vessel pushing on the TN and they should run out and have MVD.

If people want to run to the neurosurgeon and have MVD after a dentist injures them, it is their choice. I fortunately didn't fall for the crap by the neurosurgeon who was run out of his home state because he was treating his patients as geniea pigs and harming them more. IF people don't want to understand or get the help of doctors who won't do things that don't make sense, that is their choice. Its also their choice that makes them worse. Read thru this board and listen to those people's stories and how they regret having things done. DENTAL INJURIES DON'T CAUSE BLOOD VESSELS TO PRESS ON NERVES. The TNA used to have an article on their website that said "don't treat dental injures with procedures for TN". I've looked high and low for it and it has been taken down.....probably so they can talk patients into MVD after a dental injury. Maybe people should join the other forum and listen to dr. dennis, who actually is a doctor, treats patients with both types of problems, and is a voice of reason.


This time I'm turning off notifications on posts....I forgot to do that and just wanted Lou to know that it wasn't his post.

16

I guess I'll buy into the premise that a dentist can cause TN if the nerve that is compressed is in the exact area where the dental instrument hit. When I was told I could have MVD to fix my problem, the nerve that was found to be compressed on the MRI was way far upstream from anywhere where the nerve damage was.. How did that nerve get compressed or it didn't start bothering me until the dentist wrapped my nerve with a material that had formaldehyde as its active ingredient? That compression story is about as believable as the dentist who claimed the formaldehyde did nothing to cause my pain? Would you believe that too?

17

From the mouths of one of the doctors who is associated with this group.... How are they helping patients who are on this site with other classic TN? Someone other than patients need to be helping the people who post here.

http://facingfacialpain.org/index.php?option=com_content&view=article&id=199&Itemid=145

But what about those patients with other forms of facial pain? In 2008, after 18 years of existence, The Trigeminal Neuralgia Association (TNA) changed its name to TNA – The Facial Pain Association (TNA-FPA) in recognition of the fact that patients with facial pain other than classical TN also needed education, support and help too. These conditions include TN2, neuropathic facial pain, facial pain of obscure etiology, and anesthesia dolorosa, among many others. For these patients, MVD rarely leaves a patient pain-free. Furthermore, while palliative destructive procedures can, and do help, they not only are less successful than for classical TN patients, they may actually worsen the situation through increased de-afferentation, despite the best of surgical intentions.

We know that vascular compression is a necessary cause for the majority of classical TN patients. Yet up to 40% of normal living
patients and up to 50% of patients studied at autopsy have these vascular contacts without having TN.
18

Thank you for this warning. I kept thinking my dentist should send me to a neurologist, maybe good he didn't...

19

MCV, I don't know your story but you should probabl still go to a neurologist to see if they can help....just don't let them do procedures that are meant for Classical TN if that is what you have. Is your problem from a dental procedure? If so, you are past the expertise of general dentistry. Maybe try an oral surgeon or maxifaciallo dentist/surgeon.

20

My husband was left with TN post root canal. Ended up having multiple teeth pulled and saw countless dental professionals to no avail. Finally saw an oral maxiofacial surgeon who put him on neurontin. We still did not know diagnosis at this point. He had 18 months of relief, then the pain returned and neurontin did not work. He had a nerve block that helped and now words like trigeminal neuralgia were being used. That was 2 pain flare ups ago. He got another and had an MRI saw a neurosurgeon and then a pain management Dr who did a different kind of nerve block. That last 2.5 months. Now we finally in last few months (after nearly 3 years) know what this disease is.
I am trying to educate myself and help my husband as he is disspondent. I am saddened to hear that no surgical procedures help when TN is caused by dental work. Any one have any “good” advice as to getting pain under control. He is currently taking Lyrica and low dose methadone. I need to check but I believe he was put on tegretol and had back reaction.
What about radio frequency ablation? Any advice or cures from that?
Please new here and trying to learn.