This is a classic situation where medical insurance needs to roll over for our dental work..I did not care about having a pretty smile, I needed the pain to stop...My TN worsened after the dental surgeries...However I also had two parotid glands removed at my neck level...so one rolled into the other and neither insurance would pay up...The medical insurance said it was a dental problem, dental insurance stated it was a medical issue...on and on and on...and yet I was medicated and in pain...let alone able to handle making all the decisions and paying for them...co pay or not...
Yes, Bless your hearts. I can feel for all those who have responded. Be strong and look at options and journal them down...
Wish I could give you an answer, but I can't. All I know is that I have most of my TN pain where there is NO TOOTH. After multiple fillings, root canals, etc., I finally got a diagnosis of TN. Then just to be sure it wasn't the tooth, I had it pulled before I had my first MVD in 1998. When the pain came back 9 years later....there was the pain again in the very same spot of the missing tooth. Repeat MVD and no pain for 9 months...then WHAM...the same dang pain where there is no tooth. I dread going in for check ups and cleanings because it always causes a flare-up. Are you in remission after MVD? How long have you been in remission? I think I would enjoy being pain-free for a while.....unless it is a matter of needing fillings/repairs and it's not just aesthetics.
I believe the TN started with , be putting underā¦he yanked my neck with my teethā¦
ā¦Iāve had many whiplash in decades!
Nikki Anderson said:
As you said before, the faft that you are feeling pain in a tooth that is no longer there proves, and should prove to your dental pro that this is not a dental issue. the TN issue takes place behind your ear where your terigeminal nerve enters the outer-facial area.
I'm confused here. I suffered from TN pain for over seven years before my MVD, and it was definately a seperate, very unique pain different from actual dental problem pain even though it pronounced in the tooth and mouth area. Are some not able to identify between the two? Also,my understandiing of my MVD was that pieces of teflon were placed between the trigeminal nerve and the arteries that were reacting with it electronically. I have been pain free since the time I woke up from surgery a year and a half ago, and I dont think I could take it if that electrocuting pain came back. So is it possible that these insulating pieces of teflon actually move out of place in your skull?
So glad to know you are in remission :) I had lots of dental work done when I was in remission...including fillings, root canals, extractions & implants without any TN triggering. Although none of my work was done in the area of my TN (which is left upper). Now that I am in chronic pain though, even a cleaning causes massive flareup...even if they are ever so careful on my TN side.....just the water spraying & air blowing on my TN area is excruciating. I am very careful with my own dental hygiene....I use an ultrasonic style toothbrush...it does a really great job keeping my teeth & gums clean with minimal TN flaring. Best of luck for continued freedom from TN pain.
Yes. After 9 pain-free years, when I had my repeat MVD, the surgeon told me that the teflon pads had slipped down and that the nerve was also tethered with a lot of scar tissue. He cleaned up all the scar tissue and replaced the teflon pad...and I awoke pain free from surgery. But the pain came back in only 9 months. My assumption is that there is now new scar tissue pulling on the nerve. Where I feel pain is in the area of the #12 tooth. It feels like a hot poker is being shoved up into the root of the tooth (like when you are in need a root canal)...along with a burning sensation on the roof of my mouth and now I also get eye pain...like a knife being shoved repeatedly into the inner corner of my eye along with a constant, underlying boring-aching pain.
Nikki Anderson said:
I'm confused here. I suffered from TN pain for over seven years before my MVD, and it was definately a seperate, very unique pain different from actual dental problem pain even though it pronounced in the tooth and mouth area. Are some not able to identify between the two? Also,my understandiing of my MVD was that pieces of teflon were placed between the trigeminal nerve and the arteries that were reacting with it electronically. I have been pain free since the time I woke up from surgery a year and a half ago, and I dont think I could take it if that electrocuting pain came back. So is it possible that these insulating pieces of teflon actually move out of place in your skull?
Nikki - It took 5 years for me to get a diagnosis and no one was positive that there still was not a problem with the tooth. Even though I knew in my heart that the pain was from TN and not the tooth...I was very worried about having an MVD and waking up only to find I still had tooth pain. I did not want to take any chances..if the tooth was gone, I knew it couldn't be the problem. So I had it out and I have not missed it....I had a bridge made and was pain free for 9 years. Unfortunately, when the TN came back...the same effin' "tooth" pain came back :( Nikki Anderson said:
Not Again said:Alright, If I misunderstood, then i apologize. It actually took a psychiatrist to initiate my diagnosis to my medical and dental professionals which was a very frustratiing situation. However i dont understand why you would consider pulling teeth that are healthy when you know it is an issue that has nothing to do with your teeth. I've found that the teeth pulled before my diagnosis needlessly are sorely missed, and i have issues because of their abscence. Just sayin...
I think WE understand that the pain is from the trigeminal nerve and where we often feel the pain is in our teeth and mouths. Besides feeling pain where there is no longer a tooth, another part of my pain is a burning sensation on the roof of my mouth. And yes, dentists are often unaware of the miserable condition known as TN...but not all of them are ignorant. In fact, after going from DDS to oral surgeon to endodontist to ENT to neurologist etc., it was finally my own dentist who diagnosed my TN. And my first MVD got rid of the tooth pain. But alas, it came back after 9 years. But I digress...... what I understood KC to post as her original question was whether she should have dental work done or just get dentures. She is currently in remission & dental work will often exacerbate TN pain (happens to me every time I even get a cleaning).
Nikki Anderson said:
Guess what! Trigeminal neuralgia , although felt in your teeth, has absolutely nothing to do with your teeth! I want you to know that I too, because originally i felt it in my teeth, experienced so much pain and disbelief from professionals that it had a very adverse affect on my life. i began to feel that i was insane becasue every professional told me the pain must be in my mind. After a neurosurgeon took me seriously, and I had an MVD, I woke up with zero pain, over ayear ago and my life has been able to grow and proceed because some astute doctor took a chance. You must make thwem be aware... do not lose teeth for no reason, dont let them feel you are psychologically emoting. It is real.. and you need help/
Some of of my dental pain is different. But if the TN is in a manageable condition, but still feeling it, I find it's difficult to tell from an abscess. Because like TN an abscess can radiate pain into the face and along different teeth, especially if there has already been a root canal in that tooth. It's not the tooth nerve that hurts, because the root is gone or dead, but the infection is very painful. Sometimes the only time I can differentiate the mild TN pain and a severely infected dead tooth is a fever. Then if after a day on anti-biotics and the pain is gone, I know for sure that that tooth is the problem. My teeth are also a "trigger" area for TN which is why when I have to have a root canal it that particular area the TN gets worse for about 6 months. My neuro says that a portion of her TN patients are triggered when having to undergo dental work. She recommends taking an extra TN pill before any dental work.
Not Again said:
Yes. After 9 pain-free years, when I had my repeat MVD, the surgeon told me that the teflon pads had slipped down and that the nerve was also tethered with a lot of scar tissue. He cleaned up all the scar tissue and replaced the teflon pad...and I awoke pain free from surgery. But the pain came back in only 9 months. My assumption is that there is now new scar tissue pulling on the nerve. Where I feel pain is in the area of the #12 tooth. It feels like a hot poker is being shoved up into the root of the tooth (like when you are in need a root canal)...along with a burning sensation on the roof of my mouth and now I also get eye pain...like a knife being shoved repeatedly into the inner corner of my eye along with a constant, underlying boring-aching pain.
Nikki Anderson said:
I'm confused here. I suffered from TN pain for over seven years before my MVD, and it was definately a seperate, very unique pain different from actual dental problem pain even though it pronounced in the tooth and mouth area. Are some not able to identify between the two? Also,my understandiing of my MVD was that pieces of teflon were placed between the trigeminal nerve and the arteries that were reacting with it electronically. I have been pain free since the time I woke up from surgery a year and a half ago, and I dont think I could take it if that electrocuting pain came back. So is it possible that these insulating pieces of teflon actually move out of place in your skull?
When my TN goes into tooth area it feels exactly like when I need root canal. Only way I know for sure is dental x-rays. Dentist has said & showed me on x-Ray that my nerve across face (ear to mouth) is very low and goes right into area where teeth roots are. Wonder if nerve placement has anything to do with us feeling ourTN in teeth?
I agree Marjorie....I lost a filling and the tooth was broken, it was a back upper molar and my dentist referred me to an oral surgeon who specialises in patients with TN and TMJ and uses an IV sedation. My dentist was so good , he knew right away that the risk would be too great because they never know how deep the root and that to pull a tooth with someone with TN on the same side would be like pulling a tooth on someone without freezing it because all the freezing in the world won't numb the nerves. I haven't had too much problem with it since and it's been 4 weeks now. It was nice to feel very taken care of.
Now if only my Dr. would be this knowledgeable about TN.
You totally need an oral surgeon who specialises in TN or TMJ otherwise yes, they'll yank the tooth too hard and I know because 18 years ago I had one pulled and I've had TMJ ever since!!
I don't know about you guys but all this pain for so many years has taken it's toll on me, 54 going on 69, feel it and most days I look like it too.
Oh well, this support does help, at least I don't feel like I'm alone or crazy or a hypochondriac anymore.
Marjorie said:
My suggestion to all that have dental problems. Check out your dentist find out how much they know about tn before you make a decision as to what you want done and if possible do your dental work while in remission. A good dentist that knows about TN will work with and get the job done with little delay. But root canal, extraction and other evasive dental work is a big risk expecially if it's in the area of your tn. May God help us all it's so much we have to deal with.
Wow! A dentist or oral surgeon that specializes in TN! You are so lucky, sedated and everything :).
Cheryl said:
I agree Marjorieā¦I lost a filling and the tooth was broken, it was a back upper molar and my dentist referred me to an oral surgeon who specialises in patients with TN and TMJ and uses an IV sedation. My dentist was so good , he knew right away that the risk would be too great because they never know how deep the root and that to pull a tooth with someone with TN on the same side would be like pulling a tooth on someone without freezing it because all the freezing in the world wonāt numb the nerves. I havenāt had too much problem with it since and itās been 4 weeks now. It was nice to feel very taken care of.
Now if only my Dr. would be this knowledgeable about TN.
You totally need an oral surgeon who specialises in TN or TMJ otherwise yes, theyāll yank the tooth too hard and I know because 18 years ago I had one pulled and Iāve had TMJ ever since!!
I donāt know about you guys but all this pain for so many years has taken itās toll on me, 54 going on 69, feel it and most days I look like it too.
Oh well, this support does help, at least I donāt feel like Iām alone or crazy or a hypochondriac anymore.
Marjorie said:
My suggestion to all that have dental problems. Check out your dentist find out how much they know about tn before you make a decision as to what you want done and if possible do your dental work while in remission. A good dentist that knows about TN will work with and get the job done with little delay. But root canal, extraction and other evasive dental work is a big risk expecially if itās in the area of your tn. May God help us all itās so much we have to deal with.
I know right! It was the best experience you could hope for, I had no issues from the sedation and I slept like a baby that afternoon when I got home and again that night.
I'm not as scared now that my Dentist is in the know, too bad I couldn't get the iv sedation for fillings etc. I can't even tolerate the cleaning just like so many others here.
Wouldnāt that be great?! My son has special needs and gets most all dental stuff done under sedation from ped. spec. dentist- trust me, I asked her if she could treat me too- LOL!
I have had 24 implants during my TN illness and since my last MVD. I had dentures for 40 years and had a number of places in my lower jaw with exposed roots. I had to go to India to have my implants done because of cost and because of the type of implants needed for my lack of crestal bone. I am now finished with my dentisty, a full mouth restoration, and I have no pain, dental or TN. I can only thank God for it all, but my Dentist in Kochi India was tremendous and so was my neurosurgeon in Vancouver Canada. If you want further communication about this, let me know.
I have an amazing dentist who has worked through every step of the TN with me. I canāt tell you how many times I made appointments and insisted that I needed a root canal and the tooth was fine. Dr Orzech took xrays and made sure and sent me on my way. The meds I am on have damaged the teeth very badly. i have needed many root canals. The dry mouth that came with the meds eventually damaged the teeth so badly they stared to break off at the gum line. About 18 months ago i had all of the remaining teeth pulled on top, had 5 implants put in and then a permanent denture placed. All done in one day. It was very painful afterwards for appx a month. Best decision I have ever made regarding the TN. The denture has made it like a cushion so when I chew there is no more pain. Same with brushing my teethā¦no more pain. It has made my life so much better. I thought it would feel wrong to have something that was not my own body residing in my mouth, but for the most part I forget its even there.
Lawrence, it was wonderful to see your post and know others have done this. To the best of my knowledge I am the first person with bilateral TN to have done this in North America.
KC. I completely understand your pain (no pun intended). I was very recently facing the same issue. I am currently going through very extensive dentistry work.I have had 14 teeth pulled and have 7 fillings and 1 root canal still facing me. My latest pain episode was only 2 months ago. My teeth were so bad that I have not had steak in over a year. I decided that the TN was not going to ever go away and that i needed to do this either now or later... I had one side of my teeth pulled with no issues at all. When I had the second side done I did had another string of episodes because the very back teeth were very deeply rooted. I am still dealing with some burning/stabbing pain. I still have about 5 visits left... I think only you can say if it is worth it or not. Teeth are so close to the root that my opinion would be that chances are good that you might have an episode if you have to have teeth pulled... I hope for your sake that does not happen. On a side note, I worked with my neurologist and amped up my Tegretol before the dentistry work started to hopefully keep the pain at bay. That might be something to consider? I wish you all of the luck with your decision.
I had that problem . went to the dentist he refreed me to an oral surgeny . had oarl surgery on it āboached root canalā . felt fine for awhile it would hurt every.now and then then it was full blown hurting ātn did not know it at the timeā so went to a different dentist and he said your root canal was āboachedā and eitjer needed another root canal or surgery . i said ānoā . āpull itā i was done with root canals and surgerys . next couple of monthes leading up to the remal the pain got agoningly worse and at that point i was have pain in my lower teeth as well . hopeful that once the dreaded tooth was gone the pain would go with it . how wrong i was so i schudule another apointment and the dentist said that one little tooth cant be causing all that pain . like i was in sane or something and then i went back again and sern the dentist that extracted the tooth told him what was going on and said it sounded like nerve damage and said it would take awhile but it would get better and while all these was going on i was treated for an ear infection then swimmers ear guess what it was none of the above . anyway even tje the tooth is gone i still get phantom pain in a tooth that is not there
Nikki Anderson said:
Nikki Anderson said:
Seriously, when you have nerve pain in your teeth, after the nerve has been removed as I haveā¦ they will try to make you feel you are crazy, but you are not! Trigeminal neuralgia presents itself in your teeth in many instances, asnd because dental professionals are unaware of it, they will prescribe un-needed surgical procedures. Do not be disheartened, what you need is to see a neurologist, only then will you recieve the respect and understanding we need. Dont give up hope.
julie said:
I STILL HAVE NERVE PAIN ONLY DEEPER AFTER CROWN AND ROOT CANAL! AND WHEN I PUSH ON TOOTH IT STILL HURTS. SO UNLESS NERVE IS DEAD TO BRAIN DOES IT WORK??? THEY HAVE SEARCHED AND XRAYED AND NO REASON FOR THIS TOOTH TO FEEL ANYTHING.
My my goodness, 24 implants...I am totally blown away reading this...
How long ago was this done...
how long did the procedures take..
what would the total US dollars run?
you have my attention, my new found friend...my oh my.
please keep us in your communication jounal entries....I cant believe what I have read. Amazing
Lawrence Rae said:
I have had 24 implants during my TN illness and since my last MVD. I had dentures for 40 years and had a number of places in my lower jaw with exposed roots. I had to go to India to have my implants done because of cost and because of the type of implants needed for my lack of crestal bone. I am now finished with my dentisty, a full mouth restoration, and I have no pain, dental or TN. I can only thank God for it all, but my Dentist in Kochi India was tremendous and so was my neurosurgeon in Vancouver Canada. If you want further communication about this, let me know.
Get dentures. Definitely. I was in your place a couple years ago. My teeth were breaking but I was so scared to have them done. Then my allergist told me if he didn't know me like he did, he would have thought I was a crack addict. yep. I couldnt even find a dentist that would touch me let alone a oral surgeon. I ended up with a child dentist who worked with an older oral surgeon who actually understood tn. they decided i should try to keep the teeth they could fix and go with partials instead of taking everything out. I was scared, I really did not want to be wearing dentures at only 42 years old so I went with repair and partials. It was a disaster. One of the teeth they repaired was used to hold the partial in. It kept breaking apart so i went thru hell while they tried to fix it. The pain was so bad I was crying which really upset my poor hygenist He decided I had to either have that tooth extracted or a root canal. I was done. I had the rest of my teeth pulled and now have full upper and lower dentures which I should have just done in the first place. I put myselft through so much unneccessary suffering. Its not just the root canals and crowns. I dont have to deal with the pain of trying to brush everyday. I have "atypical" tn that is always on with triggers causing attacks that are just indescribable, which I am sure everyone can relate to. My constant pain is cheek, temple, forehead, with my 3rd brach pain only caused by triggers like cold or brushing my teeth. I have done all the treatments, surgeries, and procedures which did not work and some increased the damage. Last year I tried a stimulator chich caused so much more irreparable I was told that was it. There is nothing else to try. The best I can hope for is to find a way to keep the pain somewhat controlled. One more thing I have found not only to I not have to deal with the pain from brushing my teeth but the dentures have eliminated a lot of the pain from hot and cold.
This is probably more than I should have written. I've never posted anything before. I really hope this helps you.
Iām in the same boat right now, but Iām not in remission, so itās a little easier for me, as soon as I can I will be getting my tops done, as I had a filling in the back of one of my front for teeth fall out making that tooth fragile and guess what, you got it, I was a Jack o lantern for Halloween. My front two teeth are crowns that are 20+ years on and Iāve Bern told itās great when they last pay 10. Skating accident gone wrong. Saved my brother from a broken arm and took the busted mouth. My opinion is if your mouth is bad and you need more than a couple teeth worked on, just get it all taken care of at once. Then work in getting back into remission. Itās miserable stuff even
thinking about it. Sorry you are dealing with it!