Dont treat dental injuries with classic tn procedures

General General TN & GPN (Old Site)
41

Well, you certainly have given me a lot to think about, RCD. All the stuff about formaldehyde damage is very interesting, but I'll have to do a bit of research to see if I can even access my records here in the UK. A real problem because they were done in two different places under several different dentists!

But I admit I'm more concerned by the disparity, if that's the right word, between the drugs working and a dental problem. To my knowledge, anti-convulsants don't deal with dental pain (although they may well work on generalised nerve damage, even if it is further down the line) so if it was a genuine tooth problem my Carbamazepine wouldn't work, and it does. So that makes me wary of a tooth explanation.

I am also wary, and always have been, of the fact that X-rays showed nothing and yet, this pain is here, in spades. That's kind of a hard one to overlook. But mostly I am not convinced by a dental problem explanation because the pain doesn't really act like a true dental problem. I think if I had a bona fide dental problem, which had gone undealt with for 7 months, I'd know all about it by now!

All that said, you've given me a lot to think about. I'm going to do my research on formaldehyde and tracking down my records and see if anything workable suggests itself. Thanks for that. This condition is such a dead-end, anything useful you can work with is always helpful. It gives you something productive to do if nothing else!

Oh, nearly forgot, yes, my teeth are sensitive (extremely) to hot and cold. It's my single biggest problem. However, and it's a big however, my mouth is very touchy about winds, which is classic TN, but not a classic tooth problem - so that one always gives me pause for thought.

And isn't it the case that TN nearly always makes people rush off to the dentist? It's the nature of the beast that people mistake it for a dental problem. For many, a conviction like yours, that it's a dental problem, has made them lose many teeth, through unnecessary root canals and extractions.

It's a minefield altogether. Believe me I've wrestled with this one long into the night, many nights, to no avail. Ah, it's a bloody monster indeed....

42

Anti- convolsants do work for me and I have a dental problem. I have taken Neurontin, tegretol and carbatrol. They all had some benefit and I was moving between the three before I ended up on carbatrol Extended release and then added in baclofen which has apparently been shown to make the anti-convulsant more effective. I got tired of the try this try that combination game and when I had enough I was on the carbatrol.

If you have tooth sensitivity to hot and cold that is the tell tale sign that you need a root canal. I was told that if I started doing procedures to fix my dental injured nerve, it would get worse. When I said, how can it be worse, the doctor said "you didn't jump when I touched you". I knew exactly what he was talking about as I had seen a show on Discovery Health about nerve damage and wind/touch being a problem. You most definitely can have a dental nerve problem that is bad enough to not be able to touch at all, including sensitivity to wind/touch...

As far as nothing showing up on the xrays, missed canals hidden behind others will not show up on xrays. Partially hidden canals that are not completely filled will not show up on xrays. Small cracks in teeth will not show up. Teeth problem don't always show up on xrays, sometimes it takes the naked magnified eye.

TN problems don't typically send people to the dentist. It is far more often that dental problems are misdiagnosed as classic TN. That is the reason I stay on this site. There are way too many people who have dental problems, let doctors treat them like they are TN and end up far far worse off for it.

Again, if your problem started with sore teeth, you are far more likely to have a dental problem and starting to deal with it like it is TN is going to be a problem that you can't turn back time on. Just symptoms can not dictate which one you have when the problem is mouth related. The symptoms overlap, the diagnoses don't.

43

Oh yes, the dreaded drug combos. I'm doing that currently, combining Tegretol at the moment with Gabapentin, but so far no improvement. I did have success with Lamotrigine and Tegretol but it crucified me with migraines, so I had to give it up. I've heard of Baclofen being good - that was recommended to me before, so I am going to keep that high on my list of drugs to try. The next one I'm trying will be Amitrryptiline (sorry, not sure of the spelling in that one) - you can tell I don't have much faith in Gabapentin! I am up at 400mg presently and other than extreme tiredness it's like taking candy - no effect whatsoever. In fact, I suspect it could be a culprit in causing this extra mouth pain I have presently. It started when I started Gabapentin. But I am trying not to jump to conclusions. Connection doesn't prove causality and all that!

Unfortunately, sensitivity to temperature is also a TN problem so that doesn't prove anything categorically either. Like I say, it's a mimicking, chameleon disease this one. And I can't say I agree about dental troubles driving people to TN diagnosis, for the simple reason most dentists, and sadly a few doctors, have never heard of it. And ask how many members on here had teeth wrongly root canalled or extracted before getting a diagnosis. Most of them, so we shall have to disagree on that one. But thanks again for the formaldehyde tip - I am going to do my research on that one.



Root canal damaged said:

Anti- convolsants do work for me and I have a dental problem. I have taken Neurontin, tegretol and carbatrol. They all had some benefit and I was moving between the three before I ended up on carbatrol Extended release and then added in baclofen which has apparently been shown to make the anti-convulsant more effective. I got tired of the try this try that combination game and when I had enough I was on the carbatrol.

If you have tooth sensitivity to hot and cold that is the tell tale sign that you need a root canal. I was told that if I started doing procedures to fix my dental injured nerve, it would get worse. When I said, how can it be worse, the doctor said "you didn't jump when I touched you". I knew exactly what he was talking about as I had seen a show on Discovery Health about nerve damage and wind/touch being a problem. You most definitely can have a dental nerve problem that is bad enough to not be able to touch at all, including sensitivity to wind/touch...

As far as nothing showing up on the xrays, missed canals hidden behind others will not show up on xrays. Partially hidden canals that are not completely filled will not show up on xrays. Small cracks in teeth will not show up. Teeth problem don't always show up on xrays, sometimes it takes the naked magnified eye.

TN problems don't typically send people to the dentist. It is far more often that dental problems are misdiagnosed as classic TN. That is the reason I stay on this site. There are way too many people who have dental problems, let doctors treat them like they are TN and end up far far worse off for it.

Again, if your problem started with sore teeth, you are far more likely to have a dental problem and starting to deal with it like it is TN is going to be a problem that you can't turn back time on. Just symptoms can not dictate which one you have when the problem is mouth related. The symptoms overlap, the diagnoses don't.

44

Red, the issue on this board is that people who have dental injuries are being swayed by people who have classic TN. This "carefully researched survey" states

There isn’t much we can do with these nerve injuries aside from waiting for a recovery which may not always happen. But with these precautions your chances of an injury are likely to be much reduced.

Unfortunately, they don't elaborate on it more. There are so many dental injured people here having Gamma Knife, MVD, etc... because they are desperate and they don't like the truth about dental injuries which is...unless you do something almost immediately, there isn't anything you can do about it. And they can find doctors who will do whatever procedure you want, probably out of ignorance. If they don't believe what we are trying to tell them, they should research through this board and read some of the horror stories. Personally, I think it would help to make two main threads on this board - one for dental (and other) injured patients and another for Classic TN 1 - the disease that came out of nowhere.

This article that Cleo posted clearly says that the damage from dental injury can be so severe that you cant stand touch and a breeze blowing across your face. There is a active poster who believes that since this is her problem and anti-seizure drugs help her, she is 100% TN 1 and has tell tale symptoms of the need for a root canal or repair to one that has been done. I'm not trying to criticize her, I just think that there needs to be someone who monitors these types of situations with the credentials needed to keep people from comparing apples to oranges. Are there not any doctors/neuros who know the difference between an injury and a disease to help out here?

On the dental nerve injury board that went down years ago, we didn't see injured patients being diagnosed with the TN disease and having illogical MVD surgeries, gamma knife, etc.... We did frequently see people have nerves cut, frozen, grafted with very little success and often increased pain.

45

Maybe this is why some people get the disease (TN1, TN2, ATN) and not from the dentist (the condition of neuralgia on the trigeminal nerve due to injury).

http://facingfacialpain.org/index.php?option=com_content&view=article&id=165&Itemid=135

46

Excuse me? I'm a little unclear on where the quotation comes from. It wasn't in the article "Who Gets TN?"

I think I understand your proposal to split out commentary and information on dental-injury related face pain versus classic TN with its seemingly spontaneous volleys of lightning-strike electric shock pain. But our shared problem is that the "split" is not nearly as unambiguous as we might like. Over the past 18 years I've seen both sides of this story. Some people have a dental procedure and face pain emerges six months later. Is their pain due to dental procedure, or has it emerged spontaneously? How doe we discriminate the two? Likewise, how do we reach people whose facial pain is more immediate after dental extraction or root canal -- before the injury becomes so deep that remedial measures really can't be expected to work? The great majority of people come to Living With TN after months or years of facial pain problems that their doctors don't fully understand.

These things being said, I would concur with you that Gamma Knife is never really appropriate as a remedy for face pain that can be closely associated with a dental procedure. I've made my opinion and the research on this issue known at multiple places on this site. I would personally like to see the procedure banned for face pain overall, because it fails so often and pain recurs within three years in so many people who are initially successful in a GK procedure.

There is also a developing trend among neurosurgeons to resist using RF Rhizotomy in patients whose dominant pain features seem to be "atypical" or neuropathy-related. Rhizotomy is a form of controlled damage to the trigeminal nerve (creating a lesion) which interrupts the ability of the nerve to transmit bursts of pain. It's effective for seven years or more in about 50-70% of patients with classic TN, and perhaps half that with patients whose pain is neuropathy-related or indeterminate. And yes, it can make matters worse in some patients (not all).

This is the core issue at the present state of medical practice: we know that the destructive procedures can cause worsening of pain in many patients. But we also know that these procedures can provide pain relief AND DO in thousands of people who suffer with atypical forms of face pain. Doctors really don't know how to reliably distinguish between these two groups of patients. So should doctors deny that possibility of relief to thousands of people out of concern for the risks? You tell me.

Your further thoughts are welcome,



Root canal damaged said:

Red, the issue on this board is that people who have dental injuries are being swayed by people who have classic TN. This "carefully researched survey" states

There isn’t much we can do with these nerve injuries aside from waiting for a recovery which may not always happen. But with these precautions your chances of an injury are likely to be much reduced.

47

Red, I don't see the post now but it was your response to the article that Cleo posted... See below from my email notification...

-------

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

48

RC, I've met George Wiegel many years ago and he's certainly qualified to comment. He's co-author of "Striking Back -- The Trigeminal Neuralgia Handbook". The "why" of TN and ATN are still a puzzle; it may not be correct even to call them a "disease", since they really aren't transmissible in any way we can reliably trace. "Disorder" is more often used. While I applaud efforts of the type he describes., I wouldn't hold out too much sort-term hope for a gene-based therapy that doesn't cause side effects. There are very few of those being used in current medicine (at least that I know of personally). And individual genes very often interact in more than one function or condition within the body; the interactions are a bear to quantify, regardless of progress in mapping the genome as a whole.

One other and related approach to TN pain is being pursued in the UK with Stage I trials of a medication which has proven effective against migraine and which suppresses a gene specifically associated with chronic face and head pain. Unfortunately, as I've learned in correspondence with the company doing the trials, it may be three years or more before the company can test this drug on a large scale in clinical settings, and even longer before it can come to market even in the UK. I'm no happier about this situation than you are, RC. My wife has had bilateral TN1 and TN2 since the late 1990s.

Regards, REd


Root canal damaged said:

Maybe this is why some people get the disease (TN1, TN2, ATN) and not from the dentist (the condition of neuralgia on the trigeminal nerve due to injury).

http://facingfacialpain.org/index.php?option=com_content&view=a...

49

I am glad to see on another board that a dental injured person went to Dr. Casey and was told that there was nothing to do but medications and possibly those electrode implants. Maybe he understands the difference. I would hope that before someone went to extensive and invasive electro operation that they would give that Calmare/Scramble Therapy a try. The only doctor in the US whose practice is 100% scramble therapy is in RI the one who I was sent to by the nurse who trains on it. She said he gets all the hard cases Very compassionate doctor, responsive and understands this pain. Its non invasive and if it doesn't work after 2 treatments or has little effect after a few more he stops. I plan to do this in the spring. He is the only one who I will let near my nerve. I have hopes but cautious.

Again, Red, I'll ask that you delete my account. Last time I asked, you did not do it although I thought you said you did. It kills me to hear these stories where people end up making themselves worse because they and their doctors don't know the difference between a condition and a disease. You might want to read the article I posted above your response written by the author of Striking Back. Maybe the disease is genetic. I'd like to see some literature, studies, lawsuits where someone convinced the medical community that the disease was caused by the condition.

I get sucked into this because I feel bad for people who have a condition that they make worse and just read that someone got better. We need that forum back that is just for dental injuries where they are treated like dental injuries and dentists were on there trying to help and keep people going down the right path.

50

Cleo, I have the book on my desk in front of me, and George's name is on the cover along with Dr. Kenneth E.Casey. And quite frankly, I am tiring of your constant sniping and contention. Now KNOCK IT OFF, please.

Red

Cleo said:

George Wiegel AKA Tom Wiegel isn't co- author of the strike back book. According to his own words---He has undergone 3 MVD procedures and nerve destruction and still waiting for the pain to be deleted.

George Weigel … Famous Striking Back Author

Joins Our Volunteer Team

“Your Pain Has Been Successfully Deleted”

By George Weigel

51

RC, please don’t ask a very hard working and caring Moderator to do what you can easily. We always hope our members will stay, most find comfort, support and solace here. However, if you do wish to leave, you may close/ delet your account at any time. It is a quick and easy job.



Root canal damaged said:

I am glad to see on another board that a dental injured person went to Dr. Casey and was told that there was nothing to do but medications and possibly those electrode implants. Maybe he understands the difference. I would hope that before someone went to extensive and invasive electro operation that they would give that Calmare/Scramble Therapy a try. The only doctor in the US whose practice is 100% scramble therapy is in RI the one who I was sent to by the nurse who trains on it. She said he gets all the hard cases Very compassionate doctor, responsive and understands this pain. Its non invasive and if it doesn’t work after 2 treatments or has little effect after a few more he stops. I plan to do this in the spring. He is the only one who I will let near my nerve. I have hopes but cautious.

Again, Red, I’ll ask that you delete my account. Last time I asked, you did not do it although I thought you said you did. It kills me to hear these stories where people end up making themselves worse because they and their doctors don’t know the difference between a condition and a disease. You might want to read the article I posted above your response written by the author of Striking Back. Maybe the disease is genetic. I’d like to see some literature, studies, lawsuits where someone convinced the medical community that the disease was caused by the condition.

I get sucked into this because I feel bad for people who have a condition that they make worse and just read that someone got better. We need that forum back that is just for dental injuries where they are treated like dental injuries and dentists were on there trying to help and keep people going down the right path.

52

I thought I tried to delete it once before and couldn't and was told by Red that he would. Sorry if I'm confused....I take a lot of drugs and can barely remember important things.

I was told that if I delete my account, all my postings, including this thread will go away. I think things that are said here need to be available for people to read. I'll just stop the email notifications.

I'm really sorry that this dental injury issue becomes such a hot and frustrating issue. It shouldn't be but people are desperate...as I fully know I'm 9 years out and still desperate.

53

When I joined this group I wrote about my situation with a root canal, first ever in 68 years. I also shared that I had met an oral surgeon who performed cavitation surgery on a regular basis to people who had had dental procedures that did not heal correctly. I agree with “root canal damaged” on all points. When I introduced the cavitation theory there was little response or one or two just pooh poohed it. I went ahead and had the surgery on three sites in my mouth and sure enough these sites had never grown normal bone and were filled with " crud". My TN has improve 40-50% and I am confident that with time it will resolve itself. My doctor uses your own blood platelets injected into the sites once they are clean to stimulate bone growth along with ozone to make sure the area is free of harmful bacteria. I am so sorry for the pain we all have felt. Everyone just wants their life back. I am so glad I rejected all the other surgical options that were presented to me. I know I would be worse, not better.

54

Another note about materials used. I agree that you must question what is being put in your mouth. My dentist would never use formaldehyde - ozone only,and biocompatible fillings. We will look back on the procedures that most dentists use as brutal. The whole idea of a root canal the way they are currently done is insane. Read Weston Price, DDS…

55

Hi Selah, very interesting to hear about cavitation surgery. That's a new one to me - I've never heard of it. Can you tell me what it is, or recommend a link where I can go read up on it? Ta!

56

You can tell I'm not a dentist because, other than the odd looking blot between the two roots of the first tooth, I can't tell what's overfill and what's not. What part is the extended file???

57

In the print provided by Cleo, it appears that overfill has occurred in the small "clot" between the two roots of the left tooth. The bright space in the lower part of the left root in that tooth appears to be a broken-off metal file head.

58

Hi Red, do you mean the little curved 'claw' sitting behind the blot right at the bottom of the back root on the left tooth? If so, that kind of looks like it went through the back of the root tip, or it got bent and couldn't be pulled back out. I'm curious about this because on one of my root canals the dentist went right through the tip of the tooth and I think lost a bit of the file head. I did try to find out if it was the root canal next to my 'problem' tooth i.e. the tooth that triggered/triggers my TN, but the dentist was unable to identify it. (This was a good few years later; I had moved away from that dentist.) To be honest, I wish I had enquired more about it at the time and taken a better note of what had happened, then I wouldn't be adding it to my list of things to worry about now!

Richard A. “Red” Lawhern said:

In the print provided by Cleo, it appears that overfill has occurred in the small “clot” between the two roots of the left tooth. The bright space in the lower part of the left root in that tooth appears to be a broken-off metal file head.

59

Yup... the curved "claw" looks like a badly bent tip for a drill bit / file bit. However, the resolution of the picture is just about at the limits of what would support that interpretation of the image. On this one, I yield the floor to Cleo as she's studied more dental X-ray prints than I have.

Regards, Red

60

Why do you think when it’s starts with dental work that it is different?