Hi everyone, Just a question, did anyone think they had a tooth issue and keep visiting the dentist only to be told they have nothing wrong with their teeth, before going to the doctor and being diagnosed with ATN. I have constant burning in my upper right back molars and cheek pain which never switches off. It is less in the morning but gets worse as the day goes on. Does anyone recognise these symptoms as typical, as I just want some reassurance that I am going down the right path, before I start taking a concoction of drugs to help with the pain. Thanks to anyone that can help me.
Hi Lucy, actually I had 5 root canals (2 on the 2 teeth) all 3 teeth were extracted. The dentists are very ignorant as to directing patients to a neurologist in determining if it is a tooth problem or trigeminal problem. Also, in the same token you can have an ignorant neurologist thinking its a dental problem which was in my case. Both type of doctors were very ignorant in my case as to what was going on. I am now diagnosed with ATN and trigeminal neuropathy with permanent damage. I will be heading to a nerve injury doctor out of Atlanta on the 21st of this month. I’m on tons of meds and very miserable 24/7.
The first endodontist tested me 3 times and couldn’t find anything wrong. She didn’t do unnecessary work on me, but she didn’t refer me anywhere either. So I went and found another Endo who couldn’t find anything wrong but he eventually agreed to give me a root canal I didn’t need. If the first Endo would have referred me to an oral/facial pain specialist, she would have saved me a lot of time and pain. I’m going to write her a letter thanking her for not doing unnecessary work, but also let her know that next time that happens, she should refer the patient to a particular doctor, or suggest they see their Neuro.
Thanks for your replies. I have not had any extractions or root canals, but the lingering thought is, have they missed something? Is this really an early nerve dying in the tooth? So although I have not had dental work done, at least by taking them out, you would know one way or the other. Already sick of the pain and just starting out on this journey. So glad I found this site for support.
Hi Lucy,
My pain is exactly the same as yours... above the back molar teeth and constant burning pain. Our type of pain is considering atypical. Typical trigeminal pain is when jolts of electric type pain go through the trigeminal nerve. I only have atypical pain.
I am 2-3 years ahead of you and yes you do wonder ALWAYS has anything been missed. Regards to dentist because of the pain i was describing they went ahead and did 4 root canals that did nothing for the pain. I then had 2 molars extracted(had a bridge placed in so i didnt look like some homeless person) and this still did nothing. Although, chewing was hard for me on that side because the pressure of pushing the molar tooth up into the gum made the area hurt a lot !!!. So having no teeth there has actually made it 'slightly' better, but that said i still chew only on my right side.
My advise to you... having done acupuncture, physio, polyp removed from sinus, deviated setptum repaired, teeth extracted, splint made, chiropractor, chinese medicines... is to get a good neurologist and ask him about getting an MRI scan done in the trigeminal area. This will allow him to rule out any other underlying factors allow you to proceed emotionally and mentally forward.
Luke
You might want to talk to an oro-facial pain specialist. They are few and far between, but better qualified than either dentists or neurologists. Some physicians might call your pain "atypical odontalgia" (literal translation "unusual tooth pain"), which is coming to be thought of as a facial neuropathy condition that operates primarily in the mandibular branch of the trigeminal nerve. Try running that term on google and see what symptoms you turn up.
Regards, Red
I did. Fortunately, my dentist recognized the signs and told me thought I had some form of TN. I am very grateful to him for his diagnosis and for not doing unnecessary dental work.
Thanks for your advice. I am in the UK, so I think they are called either maxillofacial surgeon or Neurologists. The last time I went to see the doctor he was unsure who was best to refer me to. My question is - Is the Oro-facial pain specialist the same as the Maxillofacial surgeon? Thanks for your time, I really appreciate any advice or support at this early stage in my journey.
Richard A. “Red” Lawhern said:
You might want to talk to an oro-facial pain specialist. They are few and far between, but better qualified than either dentists or neurologists. Some physicians might call your pain "atypical odontalgia" (literal translation "unusual tooth pain"), which is coming to be thought of as a facial neuropathy condition that operates primarily in the mandibular branch of the trigeminal nerve. Try running that term on google and see what symptoms you turn up.
Regards, Red
Thanks Luke for taking the time to send me a message. I am feeling pretty low at the moment, not knowing where to turn. I like you feel uncomfortable eating on the right side where the pain is and am worried that due to eating on one side only, I am making the whole thing worse and that I will end up with some issue with the jaw joint. I will ask the doctor to refer me to get an MRI to see if they can see anything which may be causing all of this. Have you had an MRI - what was it like?
Luke said:
Hi Lucy,
My pain is exactly the same as yours... above the back molar teeth and constant burning pain. Our type of pain is considering atypical. Typical trigeminal pain is when jolts of electric type pain go through the trigeminal nerve. I only have atypical pain.
I am 2-3 years ahead of you and yes you do wonder ALWAYS has anything been missed. Regards to dentist because of the pain i was describing they went ahead and did 4 root canals that did nothing for the pain. I then had 2 molars extracted(had a bridge placed in so i didnt look like some homeless person) and this still did nothing. Although, chewing was hard for me on that side because the pressure of pushing the molar tooth up into the gum made the area hurt a lot !!!. So having no teeth there has actually made it 'slightly' better, but that said i still chew only on my right side.
My advise to you... having done acupuncture, physio, polyp removed from sinus, deviated setptum repaired, teeth extracted, splint made, chiropractor, chinese medicines... is to get a good neurologist and ask him about getting an MRI scan done in the trigeminal area. This will allow him to rule out any other underlying factors allow you to proceed emotionally and mentally forward.
Luke
Thanks for taking the time to reply, I really appreciate it. Have you been able to move forward in your treatment and get any kind of relief from the pain? I seem to have so many questions and was feeling quite isolated before I found this site. I was getting really worried as I kept going to the dentist and saying I had this pain and the dentist kept saying there was nothing there. You begin to feel like they think you are some kind of attention seeker. At least I have found people who believe I have this pain. I know it will also be a source of information as so many people have gone through the same journey. I am very grateful for any help or advice at the moment.
Amy Culpepper Elliott said:
I did. Fortunately, my dentist recognized the signs and told me thought I had some form of TN. I am very grateful to him for his diagnosis and for not doing unnecessary dental work.
Hi Waigmacker, I too have been diagnosed with ATN & trigeminal neuropathy with permanent damage. I want to wish you good luck at your appointment in Atlanta and would love to hear the outcome. Would you mind sharing the name of the nerve injury dr. you are going to.
waigmacker said:
Hi Lucy, actually I had 5 root canals (2 on the 2 teeth) all 3 teeth were extracted. The dentists are very ignorant as to directing patients to a neurologist in determining if it is a tooth problem or trigeminal problem. Also, in the same token you can have an ignorant neurologist thinking its a dental problem which was in my case. Both type of doctors were very ignorant in my case as to what was going on. I am now diagnosed with ATN and trigeminal neuropathy with permanent damage. I will be heading to a nerve injury doctor out of Atlanta on the 21st of this month. I'm on tons of meds and very miserable 24/7.
Hi lucylucy,
I am also in the UK and I had an MRI last September time, I found it OK to be honest as there was a cool breeze flowing through and I listened to classical music whilst in there. I closed my eyes and imagined that I was on a train journey and that helped alot. Where in the UK are you? I'm in Leeds
yes i did for sure. hope the pain subsides for you
Hi Michelle
I am in Nottinghamshire. Just a question, how long were you in the MRI scanner for? Did it locate what was causing your problem? How are you at the moment?
Michelle said:
Hi lucylucy,
I am also in the UK and I had an MRI last September time, I found it OK to be honest as there was a cool breeze flowing through and I listened to classical music whilst in there. I closed my eyes and imagined that I was on a train journey and that helped alot. Where in the UK are you? I'm in Leeds
Hi Lucy
I'm sure Michelle can tell you about her scan but perhaps it will help if I also tell you about mine. I had a scan at Taunton hospital around a month ago. I think I was actually in the scanner itself for around 20 minutes. I was nervous beforehand but actually it was fine. I had Queen on the headphones which helped to 'drown' out the noise of the scanner, it is a bit noisy in there.
What I liked was the arrangement of angled mirrors in the part of the scanner directly above me which meant I could look out and see the technicians next door, I did not feel claustrophobic in there at all because of that. It made a real difference!
My scan was successful in that a compressed nerve was found on the scan so we know what is causing my problems.
Hi
Thanks for your reply. Maybe the scan will not be so bad after all. Can you close your eyes whilst you are in there? I think that would be the best method.
Yes, you can close your eyes if you wish to. It's entirely your own choice. I think it's very much a case of doing what feels right for you. I did not find it uncomfortable in there at all to be honest.
One thing I would suggest is that you take some music that you like - it's a good distraction. :)