I have suffered with this pain off and on since my first ever root canal on July 15, 2013. During the procedure the endo was drilling didn't feel anything and after he removed the root and showed it to me he began to drill again. Shortly thereafter a pain like I have never experienced came over me. It felt like thousands of needles sticking into my brain. After screaming the endo stopped and I told him what I was feeling. He takes numerous x-rays and tells me he went too deep but it would be okay. I leave the office in more pain than I arrived in with a prescription of Hydro. Months of antibiotics and hydro soon follow along with the loss of five teeth total. I have noticed that when I take 1500 mg of antibiotics a day my symptoms vanish except for the numb lip. Has anyone else experienced this? I'm now at a completely different oral surgeon, all the neurologists in Memphis have refused to see me because this was due to a root canal. The os treating me said that a neurologist can't help me anyways because the nerve is not severed and this is the best that it will get. I may also add that the new os knows the endo that did the bad rc and the other os who tried to cover the mess up. Again, just wondering if anyone else notices if they take 1500 mg of antibiotics a day the pain goes away.
I am so sorry to hear of your story. I think it's stupid for neuros not to see you because it was a root canal. Have you found one yet? I was just recently diagnosed (not real onset) and I did take some antibiotics for a sinus infection, but I didn't notice a change (I hoped I would). I can't remember my dosage, but I don't think it was as high as yours. It seems interesting the pain goes away at high dosages of antibiotics, may be worth further study.
I was just reading your profile. I cannot believe what you have been through. I have heard a lot of horror dental stories on here and yours just about tops the cake!
I am so sorry that you are going through this.
I had an unnecessary root canal last year. Before that took place I was in a lot of pain for a few months and was given antibiotics several times. I, as well, would feel the pain diminish on them but then come back afterwards. Since then I have learnt that TN comes and goes. It is very unpredictable so I think that may have had something to do with the ups and downs of pain.
You cannot continually take antibiotics anyways. You will become immune and they are very hard on your system. I think that would create a whole other gambit of problems. There are so many areas of study that need attention when it comes to TN and neuropathy in general.
And everything about this makes dentists and doctors very nervous. They don't want to step on each other's toes or place blame on anyone. From what I have seen they all cover a bit for each other.
Don't stop until you get answers. Keep searching for different doctor's and neurologists. Depending on where you are located there may be some listed under the "Doctors" tab at the top.
Everyone here is very understanding and between us there is a wealth of knowledge and experience.
Hi,
sorry to hear that you're in such pain, I like you have ended up with multiple extractions done in desperation & now seeming totally irrelevant as I still experience "phantom" tooth pain in the area of my mouth that has no teeth, which can be quite disconcerting & I know that I'm not the only one on here to have found that. I have found that antibiotics have eased some of my pain during previous flare-ups, but then I also feel that our dentists can forget from time to time that they are not infallible & they can also be a little extraction happy, if you know what I mean. I have also found that a lot of the dental work has left my teeth very brittle, causing further problems.
I hope that you get some relief soon! :-)
Dee
I asked the question of someone else the other day and will ask again here, has anyone thought of extracting all teeth and replacing with false ones? I'm only asking because our dentist experiences are all so horrific that it makes sense to me in a "well at least I know it's not my teeth" way.Southerngal you're story makes my blood run cold!
Do you not have an overseeing ombudsman or whatever for rogue dentists? Someone to report them too?
The thing about the antibiotics makes some sense. Many antibiotics have an anti-inflammatory effect, as well as the germ killing mechanism. So it would seem that whatever one you are on---has that action in it, and decreased some of the inflammation of the nerve, which in turn helped the pain. The issue about your doctors---I deeply empathize with you! I am a ten year TN gal---and I could share a real horror story about the physicians and surgeons I have dealt with since my diagnosis. Oh yes! Many of these docs stick together! Sadly, they are not there for the benefit of the patient--it is all about money and covering their back side. (I spent many years working in the medical field--so I speak from experience from a career and patient perspective) I no longer work due to my progressive TN. The good news is that there are some very caring physicians and surgeons out there! I had to travel 800 miles to find one---unfortunately, I can no longer afford the trips to go see him, but if you have the means to go elsewhere, then I say to you---GO NOW and QUICKLY. There are many doctors mentioned on this forum, and then you can check their credentials online also. I wish you all the best, and I hope you can find some good treatment. I have you in my prayers.
yes Catwoman, that thought has crossed my mind at various times over the years but I suppose it all boils down to basic pride. I'm only 47, the thought of having absolutely no teeth sends shivers down my spine. :-)
I reckon that all my problems started when I registered with a newly opened dental practice back when I was 19. He convinced me that it was best to root canal a lot of the teeth in my lower jaw before the problems began resulting in my only having seven teeth left in my lower jaw. I was young & gullible & back then there was no authoritative board governing dentists over here & even now, they still aren't "policed" too well here in the UK. Ironically, despite growing up in the same small town, my husband & I never met until we both moved to Belfast to work in government offices but when we did meet through both renting a room in a "shared" house, it turned out that he had registered with this same new dentist & had been told the same thing as me & is in the same boat as me now, with brittle teeth that just keep breaking & having to be extracted. Luckily he doesn't suffer from TN, I seriously doubt that he could cope with his particular affliction. ;-)
Pulling all my teeth is not an option. The ones that I still have do not cause any pain. As for dentures, I now have traumatic ulcers that NEVER go away on my gums above my teeth only on my maxillary (top). When tooth #8 was removed I had a "flipper" made. It was a total waste of 816.00. It hurt to wear it and less than 8 weeks I lost tooth #9. I didn't want to get one at all but the last appointment with the new OS he ordered me to get one. My bottom teeth have shifted tremendously since # 25 was pulled. Thankfully, I don't have any bottom pain at all now. OS said he also wanted to see how much my lip still droops, on the right top side, after I have partials in. I'm missing the same amount on both sides on top. The droopy lip IS NOT from missing teeth, it's from nerve damage. I quit cold turkey two days ago with the Neurontin. It was causing more problems and I had become a walking zombie. I surly don't need to add to to the pile. The last time I had an electrical zap was the day the OS prescribe the meds. Today was my first one that I recall having since I started the meds on the 13th. It's raining, so I expected it to happen. I videoed it today. I'm hoping that someone can tell me why the vein or nerve - whichever is under my top lip- will make a knot and twitch/pulsate (got on camera also) and can link this to, hopefully, finding a cure. On a lighter note, Humana has assigned me a Clinical Access Team - whatever that is- and she is working on my case only until she can get me to someone who can and agrees to treat me. Hopefully, since Humana knows I've filed suit against the chain restaurant they know they will get their money back and will get me a great doctor and allow me to have the treatment that we agree on. I can actually point to the exact area that my pain is at and it radiates outward. When I have the radiating pain my left side will start twitching, the nerve/vein under my top lip will form a ball. I've put the attacks into 3 separate categories - small, medium, and I want to die. I would never kill myself I wouldn't put my family and love ones through that. I'm a fighter. I never understood how people could be so selfish until this. When I have those " I want to die" electric shocks the only thing I think about is killing myself. After the episode is gone I'm mad that my brain would even think that way, it's not me thinking that ... hard to explain. I'm a single mom and Candace is my world. I have a wonderful boyfriend and my mother has always been my backbone, my cheerleader, etc. I will get fixed. I've got to find some one , the right one, to treat me. I swear, I've aged 15 years since this accident. The numbers on TN suffers just doesn't seem correct kinda like the illegal alien numbers living in the US. I believe there are a lot of misdiagnosis too. I will definitely vet my physician. Just because Humana finds one doesn't mean I'm gonna let him treat me. As for Lyme disease, this pain began during my first root canal, I can pinpoint the exact site. The endo refused to give me copies of those x-rays. I did secure a copy of the panoramic x-ray the first os took before he charged me for a procedure he didn't do. I'm 99.9 % positive it was the root canal. I was in pain after he admitted to going to deep and the pain has never stopped. I didn't have the dropped lip before the root canal either. It never "woke up" after the root canal. Wish I could post pictures of my mouth. It's very obvious. My right top side doesn't move when I talk nor when I smile just stays turned down. But, hey, take my blood and run every test possible. I need a cure as do the rest of us!
catwoman said:
I asked the question of someone else the other day and will ask again here, has anyone thought of extracting all teeth and replacing with false ones? I'm only asking because our dentist experiences are all so horrific that it makes sense to me in a "well at least I know it's not my teeth" way.Southerngal you're story makes my blood run cold!
Do you not have an overseeing ombudsman or whatever for rogue dentists? Someone to report them too?
((((((((( hug ))))))))))
We have a state dental board unfortunately, the endo sits on it as well as teaches at the University of Tennessee which is suppose to be the number one school of Dentistry. The endo sent me to his buddy the first os who also teaches at UT. I could write a book on him. I know for a fact that there is wide-spread cheating going on in the dental programs and the University is aware also. They've turned their heads and have the answers to board questions the state board knows, not sure they didn't give the answers to the school. Memphis is corrupt from the school systems, police department, to the Mayor's Office. Too many kin to each other. My personal dentist since I was 12 who referred me to the endo he sits on the board at the university, too. He knows what has happened to me. It's very obvious if you see my face. It's pathetic! I went to get records from endo and was denied to have copies of all x-rays - said I didn't need them. They gave me x-ray of tooth that wasn't even treated with rc. I have an attorney, but that's not getting me the care I need. I want to be fixed. A law suit wont fix me besides I'm already suing the restaurant. I was the fourth person this has happened to. The drs. just made it worse. I'm sure if I sue they will all turn on each other and point fingers. I've got all the other medial records. Their record keeping is laughable. None of them wrote any of the symptoms, lip numbness, twitching, leaking tooth after rc, headaces, etc. One said teeth were fractured - which is obvious- one said no fractures. One said tooth 24 was dead and need rc. Thankfully, I didn't do it. The new os said it was perfectly fine. I still have it and it doesn't hurt. The new os is the only one that has noted in my file everything I have concerns with. Endo said I had a facial stroke then said I trained my mouth to turn down then said it would go away in 6 months to a year after first rc. After second rc, he refused to see me. Wound up in the er. I could go on.... like I said, pathetic! I don't think that reporting the problem will do any good because they are all intertwined.
Southerngal said:
Pulling all my teeth is not an option. The ones that I still have do not cause any pain. As for dentures, I now have traumatic ulcers that NEVER go away on my gums above my teeth only on my maxillary (top). When tooth #8 was removed I had a "flipper" made. It was a total waste of 816.00. It hurt to wear it and less than 8 weeks I lost tooth #9. I didn't want to get one at all but the last appointment with the new OS he ordered me to get one. My bottom teeth have shifted tremendously since # 25 was pulled. Thankfully, I don't have any bottom pain at all now. OS said he also wanted to see how much my lip still droops, on the right top side, after I have partials in. I'm missing the same amount on both sides on top. The droopy lip IS NOT from missing teeth, it's from nerve damage. I quit cold turkey two days ago with the Neurontin. It was causing more problems and I had become a walking zombie. I surly don't need to add to to the pile. The last time I had an electrical zap was the day the OS prescribe the meds. Today was my first one that I recall having since I started the meds on the 13th. It's raining, so I expected it to happen. I videoed it today. I'm hoping that someone can tell me why the vein or nerve - whichever is under my top lip- will make a knot and twitch/pulsate (got on camera also) and can link this to, hopefully, finding a cure. On a lighter note, Humana has assigned me a Clinical Access Team - whatever that is- and she is working on my case only until she can get me to someone who can and agrees to treat me. Hopefully, since Humana knows I've filed suit against the chain restaurant they know they will get their money back and will get me a great doctor and allow me to have the treatment that we agree on. I can actually point to the exact area that my pain is at and it radiates outward. When I have the radiating pain my left side will start twitching, the nerve/vein under my top lip will form a ball. I've put the attacks into 3 separate categories - small, medium, and I want to die. I would never kill myself I wouldn't put my family and love ones through that. I'm a fighter. I never understood how people could be so selfish until this. When I have those " I want to die" electric shocks the only thing I think about is killing myself. After the episode is gone I'm mad that my brain would even think that way, it's not me thinking that ... hard to explain. I'm a single mom and Candace is my world. I have a wonderful boyfriend and my mother has always been my backbone, my cheerleader, etc. I will get fixed. I've got to find some one , the right one, to treat me. I swear, I've aged 15 years since this accident. The numbers on TN suffers just doesn't seem correct kinda like the illegal alien numbers living in the US. I believe there are a lot of misdiagnosis too. I will definitely vet my physician. Just because Humana finds one doesn't mean I'm gonna let him treat me. As for Lyme disease, this pain began during my first root canal, I can pinpoint the exact site. The endo refused to give me copies of those x-rays. I did secure a copy of the panoramic x-ray the first os took before he charged me for a procedure he didn't do. I'm 99.9 % positive it was the root canal. I was in pain after he admitted to going to deep and the pain has never stopped. I didn't have the dropped lip before the root canal either. It never "woke up" after the root canal. Wish I could post pictures of my mouth. It's very obvious. My right top side doesn't move when I talk nor when I smile just stays turned down. But, hey, take my blood and run every test possible. I need a cure as do the rest of us!
catwoman said:I asked the question of someone else the other day and will ask again here, has anyone thought of extracting all teeth and replacing with false ones? I'm only asking because our dentist experiences are all so horrific that it makes sense to me in a "well at least I know it's not my teeth" way.Southerngal you're story makes my blood run cold!
Do you not have an overseeing ombudsman or whatever for rogue dentists? Someone to report them too?
I have just finished reading your story and have officially been rendered speechless. No mean feat!
Cleo,
First rc was on 7/15/13 then extracted on 10/25/13 but had endured an apico two weeks before extraction.
I don't have a clue what the tooth was packed with - It was temporary because my regular dentist was suppose to put something that was permanent with color to match to keep it from turning yellow. -that's what I was told. It was after extraction that I saw my dentist. Needless to say, he was pretty pissed. He left the room when I showed him a tooth that was chipped that wasn't which happened while I was knocked out for apico and then when he told me to close my mouth too make my imapressions for the flipper he said " close your mouth right, " I told him I was. He said," your back teeth aren't touchin." When I told him the os adjusted my bite he took off his gloves and threw them in the floor and left my room for over 20 min. There was no way I was going to tell him when he returned that the os said I had a bad dentist. I have since told him and gave my dentist his number. I made notes as well as remember that when he went too far after making numerous x-ray's to position the thing in my tooth - what ever it is- and he flushed my tooth with something that smelled like what you put in a swimming pool to shock it. I had some of it drain out of my nose when I got home. It was some kind of antiseptic, he also changed to a different file number. I read yesterday about the bad stuff that has numerous names. The endo is also a member of the American Endodontist Assoc. - most of them use the stuff even though they know it's bad. I still have ALL my teeth. Including the two the endo did the rc on. I wonder if it can be tested. Do you have any idea, Cleo? He sure as heck wont be honest about it - He hasn't been honest yet - why start now.
Cleo said:D
I have only read part of the story here so far and had to stop and ask a few questions if you don't mind. How long after the root canal did the extraction take place? Did the endo or any other OS mention to you about what chemical concoction was used in that R/C TOOTH after the drill mistake?
Hi Southerngal,
I am very sorry to hear about what you are going through. Regarding antibiotics, every time I was put on a round of antibiotics (Dalacin) I had very little pain. In my case, I had a persistent infection which a root-canal surgery helped for a month or so but once it got back my surgeon refused to take an x-ray for months and I was stupid enough to keep seing him and trusting him the pain was unimportant until the infection got really bad - then the antibiotics and more surgeries started.
I took the OS and a dentist who had no license to treat patients in my country (I found out later) and who sent me to this OS after messing up my teeth to the court and you would not believe the things that can happen once you do that...my lawyer said it is the most natural thing for doctors who end up at court to alter patient reports and cover up for each other but my OS went a step further when he photoshopped a digital x-ray:/ It cost me a lot of money to prove that it was done in a graphic program but when it was proven I took it to the police. I do not expect anything major will happen but at least I feel I fought for myself. By the way, the dentist without a license was employed by another dentist who was a president of the Board of Dentistry in my district of Prague that was in charge of my case. You would think this is such an obvious conflict of interest but maybe the world of dentistry thinks different from the rest of the world:)
Take care and I hope you'll feel better soon,
Oli
Oh dear Southerngal, so sorry to hear of all your trouble.
I believe my TN developed increasingly after a failed root canal, the tooth had to be extracted and the dental practitioner at the time left both roots behind (the extraction site had to be disturbed again so the roots could be dug out). Since a young child I have always had dental problems, over-crowding, tooth decay causing early fillings etc etc, I believe this may have given me early TN symptoms.
The more I read about the horrendous stories us TN sufferers go through after dental procedures, the more I think Trigeminal Neuralgia is in everyone. Its possible that nerve damage can occur in any patient during or after a dental procedure, infection can be set off and/or increased sensitivity of the Trigeminal nerve. I suppose infection can occur at anytime regarding different diseases/conditions, also stress and anxiety can lead to nerve compression of the trigeminal nerve I believe.
One dentist said to me that some patients are more suseptable than others regrading Trigeminal Neuralgia, they said what we learn as dental practitioners as the norm, some patient's are more prone to develop increased nerve sensitivity (TN) during or after a dental procedure.
I hope you can get treated very soon, do you have a dental care agency in the US ? Here in the UK we have PALS (Patient Advice and Liaison Service), also NHS complaints section. In most cases the service is outstanding and patients are very well looked after, no professional will ever turn away a patient in-need.
I also have had several dozes of Antibiotics over the years regarding tooth abscess, cold cough infections. Only ever been given the regular Amoxicillin 250-500mg, seems to work by the 3rd day but will always make me feel bloody awful regarding head-ache and co-ordination and movement problems.
Good luck, kindest regards.
Dallas
Dallas,
I can't imagine living with this for years. I've only had problems since July 15, 2013 - during root canal - although, my injury was from a damn bone in a chicken wrap at a local chain restaurant. I have insurance - the US has changed our medical policy we have to have certain things in our policy regardless if we need it to help pay for those who can't afford it - I lost my private policy because it didn't meet the new guidelines. I lost it right after this happened. Finally got insurance back in April this year after hours of phone calls. I've spent over 10,000.00 (my money, my mom's, and boyfriend's too) getting treatment during the period that I didn't have insurance. Since insurance I've spent 1000.00 - not counting the cost of the policy 354.00 a month. Anyways the insurance company has a network of doctors that if we use then the insurance will pay more. Network doctors as well as doctors who are not in the network have refused to see/treat me. I notified my insurance and told them to find me a neurosurgeon ASAP. I'm waiting.... Explained that I now have nerve damage which is a direct result of endo "going too far" - his exact words during a rc procedure. Every neurologist here in Memphis that treats TN has refused service because they don't get involved is something that may result in litigation. It was actually a doctor who diagnosed me over the phone after several calls ( him calling me back questioning about my symptoms). I had never heard of TN until he said it. He then advised no one in this town would touch me and then proceeded to tell me he probably knew who the endo was that did the bad work. Names were never discussed. Insurance Company has to "approve" treatment. I'm really worried about this. I had great insurance before all this as well as great health. Never been on any daily meds. Had a beautiful smile. In my last year of school. Had to withdraw from school and can't work. Single mom. Thankfully, I have a great boyfriend and my mom is still living and is helping some. She was diagnosed with 3 of 3 aggressive breast cancer 2 years ago. I've never had to ask for money, never. I hate that I've been a financial burden as well as caused worry to my loved ones. I've always been the strong one and now I feel like I've been beat down. I can't hide the pain/twitches. Living with TN is horrific. I think dentist and oral surgery procedures cause a lot more than what the numbers are. I also believe there are thousands out there being treated by the dentist or oral surgeon for this condition but have no clue what exactly it is. I wouldn't have if I listened to the endo and os. They were flat out lying to me. Hopefully we ALL can find a cure. It appears that not everyone's is the same kind/symptoms and not everyone has the same results from treatment. Good luck. I'm praying for us all.
Well I quit taking the gabapentin and started antibiotics a week ago. On Friday I had 2 facial attacks with zaps. I hadn't had any zaps while I was on the gabapentin. The knot that was on my top lip close to my nose disappeared after the 2nd zap - it was horrible I thought my left lip was going to rip because of the pulling it was doing and my neck joined in also which has never happened. I think the knot relocated to my #8 extraction site. I now have constant needle-like throbbing and my maxillary is swollen at the bottom - very noticeable. I'm glad I can talk now and people can understand me. Yesterday was my last antibiotic but I still have same symptoms, of course, it's rained every single day. Went to GP on Monday. She said that I def need to see a neurologists and that a dentist or oral surgeon should not be treating nerve damage without taking MRI etc. that's not their field. She's referring me to her friend who is a neurologists. She also suggested that I change dentist and oral surgeon since they know each other. After reading the new os examination notes I don't trust him. He says I insisted that he pull perfectly good teeth. He said they were bad teeth and that is what is written on my Consent for Oral surgery form that I had to sign before the removed 7,10, and 25. He also states that he removed 17, 32, and 24 among other discrepancies. He's just mad because I'm going to a neurologist after he advised me they couldn't do anything for me and he would treat me for the TN which he diagnosed three weeks ago.