I know my TN was caused by a dental procedure. No problems before, gigantic problems afterwards. But my MRI did come back with bilateral vascular compression. I must look at all of these links posted to this discussion. Very interesting.
Trying to fix or go after every vascular compression that shows up in an MRI can be a waste of time, money, and quality of life. Don't fall for the story that every vascular compression is the source of the problem. I don't know how you can tell when it is or isn't but if you don't have classical TN, but instead an injury to a nerve (root canal, cancer surgery, tooth extraction, novacaine injection, facial injury, etc...) I'd sure be weary of chasing these rabbits. There are neurosurgeons who are known for doing MVD after MVD, not fixing the problem and leaving the patient in far worse condition.
"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."
http://facingfacialpain.org/index.php?option=com_content&view=article&id=199&Itemid=145
Its hard to tell whether those other procedures will work or make things worse. I can't count the number of doctors who have told me to LEAVE IT ALONE....that it might get better for a while but will come back with a vengeance. Personally, I can't control my pain with what I have so I have never been willing to take a chance on making it worse. Your husband can try a tri-cyclic antidepressant like Elavil (amitryptilin (sp) -- generic name). I have been taking it for 9 years. It has helped but takes time to get used to as it causes extreme drowsiness. I started at 25mg 2x day and BEGGED my doctors to up it because it was helping. I'm not sure why they didn't want to but I eventually ended up on 100 mg 2x day. I also take the generic for Carbotrol extended release along with Baclofen (muscle relaxer) that has apparently been show to make the carbotrol more effective. I think through out this journey that I have taken every kind of med available short of chemo...I was even taking an Alzheimer drug for awhile. If eating dog poop would work, I'd learn to hold my nose and go for it. Although my pain has increase some over the years, the emotional toll has been immeasurable. Every day that I wake up I don't see how I'm going to make it another day. Living a long life is no longer enticing to me. I'd be happy if God took me away tomorrow and put me out of this misery.
Edna said:
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.
Although this may have come from an attorney website, there is no doubt in my mind that there are qualified doctors behind this information and probably a whole lot of medical malpractice cases...
Microvascular decompression is performed under general anesthesia and is the most invasive of these surgical procedures, but it does not result in permanent nerve damage. The aim of microvascular decompression surgery is to alleviate neurovascular compression upon the trigeminal nerve root and therefore is a surgery which is used to treat trigeminal neuralgia which was not caused by dental trauma.
http://www.mccullochlaw.net/root_canals/root_canal_malpractice.html
That is a hard “pill” to swallow (yes, I guess you could say pun intended)
The same way those of us with dental damage shouldn’t try surgery, etc., we shouldn’t try additional dental procedures. Like talked about in Striking Back, my so called dental “experts,” that I went to after I was initially hurt by a dentist, never seemed to recognize nerve damage even though it was obvious and further hurt me by performing unnecessary procedures…including pulling my tooth…and costing me thousands of dollars and probably making sure my damage was permanent. I am doing my best to keep calm and cope, but it really was nightmarish, unprofessional and very possibly criminal.
Edna, I was also going to suggest the tricylcic anti-depressants. There are TWO of them. Amitriptyline and Nortriptyline. They are known for their help in treating the burning pain. For type 2 TN. His doctor may want to add this or even change his anti-seizure med and add one of these two meds. They work great in combination with others to get better control.
I was taking it with Trileptal at one point for burining chin pain. It was a lifesaver...:)
Min
I heard the same thing from my neurosurgeon. He said the compression is there but many people have the same issue yet have no TN problems at all. Which is his reason for not diving into surgical treatment with me sooner, plus it took me 6 months to get any dentist to give me a no problems note for him. Even though all of them were saying nothings wrong with you.
I did have a glycerol rhizotomy 2 months ago after finally getting the split tooth and cracked tooth removed that 11 dentists, endodontists, and oral surgeons missed for 9 months. And got a good 28 days of reduce pain. So much reduced that I forgot about it for the most part from day 15-43. And I KNOW my problem was caused by a dental procedure/negligence. Now though I am having pain in areas never affected before. So, my interest now lies in what are patients of dental injuries taking for their pain? Because all the junk I'm taking isn't working so well. And I do have thoughts of taking myself out. So, are there any meds I haven't tried? Currently using Trileptal, Baclofen, Neurontin, Ativan.
Root canal damaged said:
Trying to fix or go after every vascular compression that shows up in an MRI can be a waste of time, money, and quality of life. Don't fall for the story that every vascular compression is the source of the problem. I don't know how you can tell when it is or isn't but if you don't have classical TN, but instead an injury to a nerve (root canal, cancer surgery, tooth extraction, novacaine injection, facial injury, etc...) I'd sure be weary of chasing these rabbits. There are neurosurgeons who are known for doing MVD after MVD, not fixing the problem and leaving the patient in far worse condition.
"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."
http://facingfacialpain.org/index.php?option=com_content&view=a...
Just thought I’d add this…sorry can’t find the link, I had copy pasted it to my notes/ research…but it was recent…from a newsletter, I believe. I’ll try and find the link to add…
Ze’ev Seltzer knows what those suffering with trigeminal neuralgia are going through. A professor of genetics at the University of Toronto, Seltzer is part of an international team studying the illness. The project is headed by Dr. Marshall Devor, a Toronto native who is laboratory head and former chair of the Department of Cell and Development Biology at the Institute of Life Sciences at the Hebrew University and who founded the school’s Center for Research on Pain. It is funded by the Facial Pain Research Foundation.
The team is exploring the genetic component of the illness – the predisposition of some people to suffer from the disease while others, who have the same nerve compression, seem to be untouched.
“This is a terrible disease,” said Seltzer. “It is the most excruciating pain syndrome that exists.”
Painful as it may be, only 70 out of 100,000 people suffer from it, making it extremely rare, especially when you consider that worldwide 20 to 25 per cent of the population will suffer from chronic pain sometime during their lifetime.
In recent years, thanks to new imaging techniques, researchers have come to learn that 16 per cent of the population “have the congenital abnormality in which a blood vessel compresses on the nerve root,” causing the condition, Seltzer said.
Researchers are investigating why only a small portion of that group actually suffer the excruciating pain, while most don’t, he continued. They think there’s a genetic reason for it, a gene or group of genes which predisposes some to experience the pain while others don’t.
“We believe that the reason for the pain … is a variant of one of the genes” or a number of genes that affects a patient’s sensitivity to pain, he said.
Researchers are hoping to isolate the gene or genes involved so that a treatment can be developed, Seltzer said
I agree with you Cleo, I was replying in reference to the FPRF and idiopathic TN and one aspect of research being done.
Cleo said:
Mimi, Dental surgeons know what procedures can cause injury right down to specific nerves of the trigeminal branch. Its has nothing to do with a gene and never will.... That is specifically why dental procedure inflicted injury to a nerve should never be treated with procedures designed for classic trigeminal neuralgia.
I posted this recently here at LwTN, it’s Dr. M Linskey’s write up on the FPRF.
There are several different research projects on the go, and I think it’s important that people inform themselves …this thread is very important and everyone should read it!
There is no one size fits all treatment for TN and Facial Pains, there are so many different aspects, this thread highlighting Damage/Nerve injuries and ONE day it is my hope that the RIGHT information is posted everywhere and the medical community learns the differences.
In the meantime we must all share and learn from one another and do our best to educate and advocate for ourselves!!
(( hugs )) Mimi
Cleo said:
Here is US NS opinion on the same topic you have listed.
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. Clearly vascular compression, while necessary, is not sufficient. The logical additional factor, that many have speculated about, likely involves additional predispositions related to genetics and/or the biology of myelin nerve insulation, axonal damage, or both. In my opinion, studies of deferential gene expression comparing classical TN patients to normal population controls carry the highest chance of uncovering potentially new fruitful areas for investigation and future therapeutic exploitation for patients with classical TN.
While the hoped for discoveries from studying differential gene expression in cases of classical TN might be more generalizable to help patients with other facial pain syndromes, this is by no means certain. Thus, simultaneous additional lines of research inquiry are also desperately needed. These include the urgent need for a better understanding of the neurochemistry and the psycho-biology of chronic neuropathic pain and the fast-track development of new agents for clinical testing. It includes studies into the biology of nerve repair and regeneration, through both pharmacological means as well as potential cellular therapies including stem cells. It also includes the need to study safe means of modulating pain perception at the brain level through brain stimulation technology.
While it is simple and conceptually satisfying to talk about the search for one “cure”, this may be an elusive goal given the heterogeneity and wide variety of facial pain syndromes suffered by patients seeking help through the TNA-FPA. More than one “cure” may be needed depending on the individual circumstances of each patient. Yet the quest for a “cure”, whether one or many, all still depend on basic science research advances which are expensive and which take years to develop, test and realize.
As a surgeon, I long for the day when we have therapies that can increase our MVD results to near 100% success, as well as offer hope and more predictable treatment success chances to our non-classical TN facial pain patients. While I am biased by my surgical background, I doubt that these advances will involve a new pill distributing an agent non-specifically throughout our body. I strongly suspect that they will involve therapies that will be most effective locally and selectively at the site of pathology or damage, either through direct open surgical application, or needle or electrode delivery into the trigeminal nerve root, ganglia, or brain. Thus surgery will likely be an important component of any success realized through our research efforts.
Cleo, that was a very informative write up...You can see that IAN on my xray and the overfill inside of it. I wish I had had this when I was trying to get the dentists to tell me the truth and I had gotten back from the Endo where I finally got part of the truth. I had to discover that it was sargenti by researching it on the internet....pathetic.
I wonder why they left out chemical burns to the IAN from formaldehyde. Maybe they think Sargenti Paste is used used only 3rd world countries and they didn't know that the US of A is a 3rd world country.
I find it absolutely criminal that our dental community and the FDA knows that this material is being used in secrecy and have made no effort to inform the public. They know enough to protect themselves, their family and friends but apparently screw the rest of us.
Cleo said:Mimi, Dental surgeons know what procedures can cause injury right down to specific nerves of the trigeminal branch. Its has nothing to do with a gene and never will.... That is specifically why dental procedure inflicted injury to a nerve should never be treated with procedures designed for classic trigeminal neuralgia.
I try not compare myself or my pain to anyone else. I think that's a huge mistake as we may all be dealing with different variables that caused the pain and that our subjective rating scale of 1 to 10 puts everyone at a disadvantage as we are compared to each other based on our ratings, which can vary greatly by an individual's pain threshold.
However, I am curious about your comment that if a diagnosis of TN is as a result of dental work it should be "left alone". I had a terrible root canal, resulting in an extraction of the infected tooth that I think may have contributed to my TN. However, I was in constant and ever-increasing pain for over 5 years before pursuing medical treatment. I am now on meds that, while not eliminating the pain, has improved it somewhat.
As an ATN diagnosed patient, how long should I have waited to let the situation heal itself. Five years is a mighty long time for it to be only chalked up to a traumatized nerve from the dental issues. And it's way too long to suffer the kind of pain that I have endured.
Let’s back up a half step here, please, and try not to throw rocks at each other. Remember how you got here? It was because you already had pain. If a dentist had made a mistake, it had already been made. You may have been desperate for solutions to your agony. As others have noted, the causes of face pain are not always apparent, and more than one thing may be going on. It isn’t a matter of unique cause, single effect.
Dental injury very often isn’t recognized as the source of face pain. And some folks get misdiagnosed with TMJ. But in both cases, the patterns of pain may be recognized as some form of nerve injury… Called trigeminal neuropathic pain for lack of a more precise term. The treatment protocols for constant 24-7 face pain start with meds used in Classic TNT and then move into the tricyclics antidepressant meds if Tegretol, Trileptal, or Gabapentin or similar meds aren’t working.
Surgery is more problematic, and trained professional neurosurgeons acknowledge much lower success rates. Many won’t perform MVD, and most realize that gamma knife doesn’t help for long or sometimes at all. The trend is toward with-holding rhizotomy unless there is a component of stabbing electric shock pain also, in addition to the constant burning and throbbing.
A follow up May be useful… Try “who gets tn” under the face pain info tab of our menus. It is the largest sample of experience ever published on the subject. And dental injury pain is among the subjects addressed.
Regards,
Red Lawhern, Ph.D., Resident research analyst, LwTN
See you after I’m back from vacation next week
This paper appears very useful, if a bit long. Thanks Cleo for finding it. My only concern is that most people who come here are already beyond the period in which the authors of the work advise that they be urgently seen. To correct that problem we will need to see many gp physicians and dentists reeducated.
Regards
Cleo, the article is not an opinion. It is a carefully researched survey of over 1200 patient profiles here at Living with TN. And I have been supporting chronic face pain patients for over 18 years. So my suggestion is that you dial it back a bit. We are not in a competition here.
Regards, Red
Jamie - why did you delete your reply.... It is exactly why I started this post. If there are 40% of people who have a blood vessel pressing on a TN and have no problems, why would a dental procedure like this cause it to start being a problem?
I'm not trying to create a fight on this post. I just want people who go to the dentist and then are told that they need these procedures like MVD, gamma knife, etc.. to think before they jump. Do some research on this site and the facial nerve pain site about patients who let this happen and REGRET it FOREVER. Common sense should prevail and when you think you are being recommended treatments that don't make sense, get 2nd, 3rd, 4th opinions. You can't undo stupid.
"Jamie replied to your discussion "DONT TREAT DENTAL INJURIES WITH CLASSIC TN PROCEDURES" on Trigeminal Neuralgia (TN) - Online Support Group
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Ok, Here's a senario...say I go to the dentist for a cavity refill. The cavity was old, deep and decayed. The dentist did his basic procedure for this type of dental complaint --- shot me up with novacaine, drilled, cleaned out the decay, drilled some more, then put a new filling in. Simple, everyday procedure and I'm good to go.
I go home that evening after the novacaine wears off and there's a new pain. A burning, nervy, stabbing pain emitting FROM the TOOTH, not down my face or cheek. Strictly localized on the tooth that was worked on earlier that day.
So the next day, I go back to the dentist complaining of pain coming from the tooth he refilled. He numbs me up and refills it again just to be sure no amalgam came loose or anything else. All looks good. The dentist sends me on my way.
The same night, after the numbing wears off, same pain is there. I go back to the dentist. He takes copious xrays again and pokes around at the filling to see if there are any holes etc. The xrays show nothing is wrong with the tooth. It's a perfectly healthy tooth that just had an old filling that needed to be refilled. I go home that night still in pain.
Fast forward to 5 years later and several misdiagnosis including sinusitis, TMJ, and then TN.
After knowing exactly when and where the pain started and that it is not a typical case of TN, why would I get an MVD, even after an MRI showed nothing was wrong?
My pain developed AFTER the dentist poked around with his needle in my mouth several times trying to fix a cavity. I didn't have TN symptoms until I was poked with a needle in my maxillary area.
The MVD operation goes deep into the nerve branch behind the Ganglion, behind the ear (way past where a dentists needle could reach to do damage). A dentists numbing needle cannot reach far enough in my mouth, into my cranial nerve roots to mess up a vessel to make it lay on another vessel etc. Does this make sense? A MVD is an operation for when the vessels are touching one another when they are not suppose to. I know Dr. Casey and others said MVD can work with Type II cases, but HOW? If the vessels aren't touching and are where they are suppose to be, what is the treatment protocol then? I'm not understanding how someone would fix something that doesn't need fixing? Do y'all understand my concern and confusion here?
What I'm trying to say is that an injury can be done to part of the TN nerve that goes across the maxillary branch, giving most people the Atypical/Type II TN (Not the classic TN) or as in my case, Atypical Odontalgia.
That is why so many people warn the people whose TN pain started out after a dental procedure or operation to NOT opt for the classic operations for TN. I ended up doing it with two Rhizotomies and paid the price. Breakthrough pain and Disability.
Basically, if the dental problem can't be fixed or corrected DENTALLY, then medications are the only route. Most doctors will tell the patients with ATN/AO that as well.
I know what Cleo and many others have been trying to say now. It makes total sense."
Be careful when you go to the dentist and have any work that requires something to be cleaned before it is fixed. A lot of times dentists use bleach (often diluted) to kill bacteria. It sometimes can cause damage but usually doesn't. Many of these rogue dentists who think its ok to put formaldehyde in your mouth will use Sargenti Paste (aka RC2B, RC2W, TCM, N2, etc....) to do the disinfecting. The fumes from the formaldehyde can escape porous teeth and harm surrounding tissue/bone/nerve that you may know about immediately or months to years down the road. You always need to ask "are you using anything with formaldehyde"...even with cavities. Don't ask "what are you using" because many of these dentists use it along with gutta percha or bleach (standard of care products) and will neglect to mention the formaldehyde part of what they used. They did this for years when insurance companies stopped covering them if they used the poison. It never hurts to ask too many questions. Better up front than after the fact when things go wrong.
THIS IS DOUBLY TRUE IF YOU ARE DEALING WITH BABY TEETH. PEDIATRIC DENTISTS WILL USE A MATERIAL (FORMOCREOSOL) THAT CONTAINS 39% FORMALDEHYDE, SOMETIMES DILUTED SOMETIMES NOT. DROPPING THAT IN THE WRONG PLACE AND EVEN PUTTING IT INTO A BLEEDING WOUND, WHICH IS WHAT HAPPENS WHEN THEY DO ROOT CANALS, CAN BE DEVASTATING. ASK ASK ASK....DON'T NOT ASK AND REGRET FOR THE REST OF YOUR OR YOUR KID'S LIFE.
Regardless of how a dentist defends using formaldehyde, don't listen. RUN and find someone else.
Hi RC damaged, thanks for the interesting discussion. It's refreshing to see someone be so ruthless about all the misapprehensions surrounding TN and ATN and the differences between the two in causation and treatment.
What I wanted to ask was, do you think there's evidence for dental causality In classic TN? Especially if there has been no immediate history of dentistry? My TN is classic, type 1. It came on with sore teeth, i.e. I had 'sensitive' teeth that suddenly got way more sensitive and started giving me electric shocks, but there was no immediate dental history. I hadn't been to a dentists in two years or more, previous to the attacks starting.
I went to the dentists when they did start, and she was convinced that an old filling was to blame, although nothing showed on the X-rays. She opened it up, preparatory to doing a root canal, but I felt something didn't mesh, did my research, went to a GP, and he diagnosed me with TN (which I had done via said research, but I didn't mention this to him; it was his own diagnosis entirely). I cancelled the root canal and we refilled the tooth, but I have always worried whether it was the wrong decision.
Having now had an MRI, which, unsurprisingly, because it is so common, was 'normal', I am now in the limbo of having classic type 1 TN, but no compressions on an MRI. Where does that leave me, other than in pain on heavy doses of medication?
Do you think that although it was two years before I had been to a dentist, my 5 previous root canals may have done damage that suddenly manifested itself through my teeth? Is an exploratory MVD a good idea or bad? – always supposing the NHS would give me one (I am in the UK and an exploratory MVD is highly unlikely under their guidelines).
My ex-neurologist (I complained about her) wrote me off immediately as soon as she got the 'normal MRI' diagnosis, but isn't it true that a compression often does not show on MRIs – they are not foolproof? So, do I have a well-hidden compressed something somewhere in there, or am I looking at historic nerve damage in my mouth that took two years to show up???
You don't fit the category of what I am preaching about which is if you go to the dentist not in pain and you walk out in pain, you don't have classic TN. If you can, find out what material was used in your 5 root canals. Get a copy of your records and if you can't ask if formaldehyde was used in them. Don't ask what was used...specifically ask if formaldehyde was used. Its best to look at the records before you even ask.
This material used on me, Sargenti paste (aka RC2B, RC2W, TCM, etc...) has formaldehyde as its active ingredient and there are many many knowledgeable dentists who for decades and decades have believed and witnessed that these types of root canals can cause damage that does not show up for years down the road. The issue with these root canals is that the formaldehyde gasses escape through the porous structure of the teeth and end up damaging nearby tissue/nerve/bone. There is also a problem with these root canals where they have (depending upon the dentist) been sloppily done and the canals are not filled completely...voids are left in them and they can reinfect. And there are also issues where the material "resorbs" over time and what might have been a complete/solid fill is no longer years down the road. Have you seen xrays of those 5 root canals recently? This is probably a long shot but it happens and I'd run this down if I were in your shoes. That material has been used in the UK too.
I'm not an expert on any of this by any means, but if it were me, I sure wouldn't let a doctor cut into me looking for a compressed nerve when one doesn't show up on the MRI. I'm not even sure I would let a doctor do it just because they saw a compressed nerve. A recent bio on a doctor who is associated with one of these TN or facial pain groups said that 40% of living people and 50% of people found on autopsy have/had compressed nerves that never caused a single problem. That is not to say that MVDs have not helped people...some say it has but some also say that it has made them worse.
If it were me...and that is just my opinion, I would run down the dental issues first. Look at the current xrays of those root canals and see what they look like and consider whether or not you may have a cracked tooth that could be causing the problem. All of this is predicated on my assumption that your stabbing pain is in your teeth. If you have endodontists, use one of them to evaluate and redo any root canal. Don't let a general dentist do it.
I am having the same problem with 2 molars (one top and one bottom) on the opposite side of my jaw from where the infamous root canal was done. There is no way I would ever walk down a path or be convinced that it is anything other than a dental problem....and I haven't had root canals on that side. I believe I did have fillings replaced in one of those teeth years and years ago maybe because the one that was in there had started breaking down and I think the tooth had a small crack...I don't remember the whole story. But, again, no one would ever convince me that I had classic TN....and especially needed MVD surgery. But this is my 2 cents.....I just don't believe that tooth pain is a cause for MVD, Gamma Knife, rhiz...?, Botox, etc.... For right now, I use sensodyne tooth paste (actually woke up in the middle of the night last night in horrible pain and slathered it all over the tooth) and take ibuprofen. It has been getting worse over time.
Just my 2 cents but its a slippery slope to start those TN treatments when your pain is in your teeth....
BTW, Woman with the electric teeth, are your attacks related to hot or cold coming in contact with the teeth?