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I have never heard of NICO...but it sounds like you have ATN. And any time I have had dental work done it aggravates my TN. Opening of your extraction site sounds like- very painful to me..... (owwww) Also.. If they can't see anything wrong with teeth on xrays, it's best to leave them alone. That usually means its just TN pain. I am sorry you are going through this..
Another thing that I do.. is I don't eat anything cold, as it causes pain for me. Room temp only. Hot foods can be a problem as well. I take Amitriptyline for my pain. I used to take Trileptal.
I hope you continue to have good days..
Min
NICO stands for neuralgia inducing cavitational osteonecrosis, and it's thought to be a cause of neuropathic facial pain by some dentists. The cure is to scrape out dead bone from the jaw, which supposedly resolves the pain. The NICO lesions are also supposedly invisible on xray.
I actually asked the neurologist about whether I have ATN (I don't call him my neurologist because he hasn't been very helpful and basically said he couldn't really help me), and he said that ATN is only when people have shooting pains along with the constant pain that I have. To be honest, the diagnosis of atypical facial pain is a little humiliating since a lot of sources say that it's a somatiform (all in my head) disorder. My mother, who is a doctor, has also said that maybe it's all in my head since all the tests have come back normal. She apologized for that later but it still really hurt when she said it.
I already had a few doctors tell me not to rock the boat and be grateful that the pain is controlled with medication. The thing is, I'm only in my 20s and I was really healthy before all this happened. My pain has never gone into remission like a lot of people with TN, so I have a hard time accepting that this is the way it's going to be. I'd be willing to go for the surgery as long as it doesn't permanently make the pain worse, since there is a chance that it could permanently cure me.
Min said:
I have never heard of NICO...but it sounds like you have ATN. And any time I have had dental work done it aggravates my TN. Opening of your extraction site sounds like- very painful to me..... (owwww) Also.. If they can't see anything wrong with teeth on xrays, it's best to leave them alone. That usually means its just TN pain. I am sorry you are going through this..
Another thing that I do.. is I don't eat anything cold, as it causes pain for me. Room temp only. Hot foods can be a problem as well. I take Amitriptyline for my pain. I used to take Trileptal.
I hope you continue to have good days..
Min
Only you can know what is best for you...my heart is breaking for you. I wish you the best in whatever you decide to do.
I know how you feel ....I had a hard time accepting TN when I was first diagnosed...so that is why my heart is breaking for you ....:(((
Hang in there...
Min
Thank you for your empathy, Min. I had the woe is me mentality going for awhile, but happily I'm not in that place anymore. Getting good control of the pain has a lot to do with it. :) I really feel for the people who have severe pain that is unresponsive to treatment. I had that for a few months and I almost went crazy, and some people on here have been suffering like that for years. :(
My mother really wants me to go ahead with the surgery. I'm seeing a couple of other specialists to get their opinions, but I will most likely go ahead with it unless the surgeon changes his mind. I'll keep everyone posted about my journey.
Min said:
Only you can know what is best for you...my heart is breaking for you. I wish you the best in whatever you decide to do.
I know how you feel ....I had a hard time accepting TN when I was first diagnosed...so that is why my heart is breaking for you ....:(((
Hang in there...
Min
Glad you joined this site. Before my MVD my teeth ached/zinged/felt like I had dental freezing which was wearing away and numbness. If Tegretol works check with your prescribing doctor to possibly alleviate more of the pain. Try to keep jaw area warm and this may help
All the best
Chippy
I must admit to being a little bemused by your being told that you can only have ATN if you have shooting pain. Tell that to your ATN!!!!!!!! I ONLY have stabbing or shooting pain when the ATN decides to "take a walk on the wild side" and visit TN. Thankfully this hasn't been for several months now.
In other words I have the first with periods of the latter. At the moment I have aching and numbness which is dead normal for me. The more you read about ATN the more you learn how incredibly diverse it is!! I'm also hugely affected by hot or cold liquids. Nothing wrecks a good cup of coffee quicker than face ache!.
Do your research, search and then search some more. I wouldn't necessarily rush into a surgery before you know more about what it sounds like you have. Good luck and power on.
((( hugs)))
I don't have any numbness, but there is a sense of tightness and the weird low voltage current sensation. I think keeping warm does help. When it dips below 0 here (which isn't often since I'm in the pacific northwest), it sometimes feels like the whole area gets really tight and more painful. I'm glad you got relief with MVD. The neurologist said that I'm not a candidate for any neurosurgery and any neurosurgeon in their right minds would refuse to operate on me. That's why he suggested I see a dental surgeon to see if one of them could help.
Chippy said:
Glad you joined this site. Before my MVD my teeth ached/zinged/felt like I had dental freezing which was wearing away and numbness. If Tegretol works check with your prescribing doctor to possibly alleviate more of the pain. Try to keep jaw area warm and this may help
All the best
Chippy
Thanks for your encouragement. I think what he meant is the diagnostic criteria for ATN is that it should start out as classic TN, or at least still have components of classic TN. Since I never had classic TN, he diagnosed it as atypical facial pain. This neurologist is very well regarded in the medical community, according to my friend who is a neurology resident. He may just not have the best bedside manner, but that's a whole different issue. I look really young for my age so sometimes people mistake me for a high school student, and sometimes I get treated like one too!
Yes, my teeth definitely are sensitive to cold liquids, but I don't notice this as much since I've been on Tegretol. Tregretol is the wonder drug - can't sing its praises enough.
I believe what I have is some sort of inflammation of the inferior alveolar nerve, caused by my extraction site not healing properly. My mother thinks that this surgery is worth a try...but she's no neurology expert since her field is immunology.
catwoman said:
I must admit to being a little bemused by your being told that you can only have ATN if you have shooting pain. Tell that to your ATN!!!!!!!! I ONLY have stabbing or shooting pain when the ATN decides to "take a walk on the wild side" and visit TN. Thankfully this hasn't been for several months now.
In other words I have the first with periods of the latter. At the moment I have aching and numbness which is dead normal for me. The more you read about ATN the more you learn how incredibly diverse it is!! I'm also hugely affected by hot or cold liquids. Nothing wrecks a good cup of coffee quicker than face ache!.
Do your research, search and then search some more. I wouldn't necessarily rush into a surgery before you know more about what it sounds like you have. Good luck and power on.
((( hugs)))
I am glad you are in a good place now. I hope this surgery works.!! I started out with ATN pain for two and a half years...the pain got soo bad..I think that is why I then got one TN strike..on Christmas day at night 12-25-07...
I have never had one since then... I have had small electric shocks, but that's it.
It really Is diverse between individuals, I am also bi-lateral. And that is said to be rare. ..and type 2 or ATN, is not as common. But there are many of us here at LwTN.
Dear Toothache,
First and foremost please remember that YOU and you alone know what your pain feels like. It’s not in your head. Who in their right mind would make up pain?
It’s important to understand that not enough is known about a Trigeminal Neuralgia, ATN, Facial Pain.
So even the most highly regarded Neurologist or Neuro surgeon (unfortunately) can be wrong…you see everyone would like things to fit into a perfect box, honestly the specialists in our field of Facial Pain are only going by what little experience they’ve had with Facial Pain and what they’ve been taught as well as outdated information that can be found online or in medical texts. BUT not enough is truly known …we all don’t fit into a box.
So when that happens a diagnosis of ATN is usually given OR it’s a somatic disorder…
Your response to Tegretol is a diagnostic criteria, ( read below) however because your description and the possibility due to dental damage, it puzzles the doctors. You don’t fit into the box.
Does that mean you don’t have Facial Pain? Uhm no, you do.
So then what do we call it? Really in the grand scheme of things I don’t care what anyone calls my face pain. I just want relief and/or a cure.
Of course not having a name can hinder your ability to get certain treatments, but if MRI has precluded any other cause for your pain,( Tumors, MS, vascular compression) and let’s say your trigeminal nerve was damaged from your oral procedure, many of the treatments available would not be beneficial for that cause of TN/facial pain.
"A diagnosis of classic trigeminal neuralgia may be supported by an individual’s positive response to a short course of an antiseizure medication. Diagnosis of TN2 is more complex and difficult, but tends to be supported by a positive response to low doses of tricyclic antidepressant medications (such as amitriptyline and nortriptyline), similar to other neuropathic pain diagnoses."
http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm
If you’ve been reading the site for awhile, you may have noticed that we all share similarities, yet not one of us shares the exact same course with our pain, treatments etc.
All this to say focus on your current pain relief situation, if Tegretol is working, fabulous! If the pain starts to break through your current dose, discuss with your doctor about increasing and/or switching to the extended release form.
Should you go ahead with further oral surgery? Only you can decide that…I personally would hesitate and really research in to it further. Trust your gut instincts.
Please try not to doubt yourself, I remember well, when I was in that situation. So I encourage you to remember that you know your body better than anyone.
Remember we don’t all fit into the same box.
Positive thoughts Toothache, I’m so glad the Tegretol is working for you!!
(( hugs )) Mimi
I have just had massive infections removed from 4 previous areas of root canals. My daughter saw the infectious black and yellow goo! But my pain is bad and I am trying to get help for that. …
Tegretol? Hasn’t helped me yet but mind you I have just had that bone scrape! I couldn’t get enough local! I felt it at the end so if you get this go for general! I told him I needed general but at least they say my infections are gone. Now what do I do about the pain? The drs aren’t helping. I am lucky to get any food and I have balancing problems I feel like I am being pushed down by my own face!
Min: Thank you for your encouragement. This is the first place where I've found other people like me. Most of these specialists have never seen a patient like me before. A family dentist I saw acted like I was nuts, and I saw her whispering to her assistant...probably that I was off my rocker.
Mimi: Yes, I think the problem is that I didn't fit into this neurologist's little box of diseases. He admitted that he's never had a patient with my symptoms. He doesn't think I have nerve injury (like a lot of other doctors think), because patients with nerve injury present with numbness. He doesn't think I have TN because I don't have the electric shocks. But, he said that I don't really fit the atypical facial pain patient either because I respond so well to Tegretol. He probably prefers that I never go back to see him again, and I don't think I will.
Carey Larsen: Did your oral surgeon see any evidence of these infections on the x-rays? My x-rays don't show anything but case reports say that often you can't see anything. Did antibiotics help your symptoms? I took lots of antibiotics in the beginning from my original oral surgeon but they didn't help. I hope your pain goes away soon. Please keep me posted about your situation. Try making smoothies or buying a commercial meal replacement like Ensure if you're not able to get any food down.
Hi wish I could give you more positive news, but I am 2 weeks since operation and I feel like the areas are going to fly off my face! I went to ER; big mistake. I was detained on the physc ward with armed guards, had child welfare sent in (I’m a Mom) & was told I was making it up!!! Then they saw my surchures bleeding and took a contrast CT-scan. They asked me after if I felt better (?)? when it showed no infections… I said no I have the same pain and they said my pain was now in my head because the infections were gone. Funny, saw no infections on nothing until the dental surgeon opened them up and black and yellow goop came out and there was dead bone to scrape. My daughter witnessed the surgery so it was not a parlor trick. Had to go to holistic dentist…
Hi Toothache - I'd be finding out some more information before committing to any form of surgery. Check out the discussion on ATN on this site. Have a read of "Striking Back" Weigal & Casey too. This book has a few great tables in it on different conditions and potential medical and surgical options. At least if you have a look at these, you'll be able to ask some better informed questions of your medical/surgical team. I've got the ATN and like Min and Mimi say, sounds awfully familiar. I had tooth removed last time and that's what set it off again. Having teeth issues isn't necessarily a cause, so much as a trigger sometimes. If you're doing well on Tegratol I'd use the time to research. You don't want to make your condition worse. Hope this helps, All the best :)
I"m sorry to hear that you were treated so badly at the ER. Do they think that the pain was caused by psychiatric issues or do they mean that the pain is now centralized? Centralization of pain is different from psychosomatic pain, although both can be colloquially referred to as "in our heads." Is there any way that you could get a lawyer involved? Having child welfare sent in sounds scary.
Thank you for sharing your experience so candidly with me.
Carey Larsen said:
Hi wish I could give you more positive news, but I am 2 weeks since operation and I feel like the areas are going to fly off my face! I went to ER; big mistake. I was detained on the physc ward with armed guards, had child welfare sent in (I'm a Mom) & was told I was making it up!!! Then they saw my surchures bleeding and took a contrast CT-scan. They asked me after if I felt better (?)? when it showed no infections... I said no I have the same pain and they said my pain was now in my head because the infections were gone. Funny, saw no infections on nothing until the dental surgeon opened them up and black and yellow goop came out and there was dead bone to scrape. My daughter witnessed the surgery so it was not a parlor trick. Had to go to holistic dentist....
Thanks for your great advice, Smiley. That's why I decided to post here, since I wanted to hear real patients' experiences. I haven't read the book "Striking Back" but my house is filled with medical texts and I've read some clinical reviews and case studies as well. Will they be coming up with a new edition? It was published in 2004 so the information in there might be a bit outdated. I wish they would have an e-book edition as well so that I can get it on my Kindle. :)
I'm seeing some other specialists before committing to the surgery, as per the oral surgeon's referral. He said I might want to see another neurologist who is more familiar with facial pain as well. He also said that taking a MRI of my jaw might show something. The problem is, the Canadian health care system is ridiculous in terms of wait times. Getting in to see a specific neurologist can take as long as 9 months. I had to wait around 6 months to get a MRI of my brain because my condition is not life threatening. That's why I'm going with dental specialists right now because they can see me within a month, being in private practice. On the other hand, I'm grateful that the neurologist appointments and the MRI were all publicly funded, since I hear of many Americans who can't even afford to see doctors or get into debt because of their medical care. But sometimes, I feel really cynical and think that we get what we pay for (which is nothing). I've had acquaintances who actually died as a result of the inefficient system.
The Tegretol is helping but not 100%. I'm a bit of a perfectionist so I'd like to find a cure, if there is one to be found. At some point I will have to give up and just be content with pain management.
Smiley said:
Hi Toothache - I'd be finding out some more information before committing to any form of surgery. Check out the discussion on ATN on this site. Have a read of "Striking Back" Weigal & Casey too. This book has a few great tables in it on different conditions and potential medical and surgical options. At least if you have a look at these, you'll be able to ask some better informed questions of your medical/surgical team. I've got the ATN and like Min and Mimi say, sounds awfully familiar. I had tooth removed last time and that's what set it off again. Having teeth issues isn't necessarily a cause, so much as a trigger sometimes. If you're doing well on Tegratol I'd use the time to research. You don't want to make your condition worse. Hope this helps, All the best :)
Hi again. I am apparently now suffering from phantom pain. I do believe that is when your nervous system gets used to a pattern of feeling. It is unfair to treat a patient that this is their fault. I am now to be fitted with a mouthpiece that can hold medicine against the offending nerve. Apparently the one traumatized by surgery and has to retrained to not trigger phantom pain… ER is going to be hearing from a lawyer soon. My daughter is very major and was my biggest defense. Its about time that people with pain are treated with dignity. Its bad enough to fight this condition without having to defend yourself too. Will let you know how the mouthpieces/medicine retainer works…
Dr HONEY at VGH etc., put things in perspective for me. He said to continue to eliminate the possible causes. One was obviously dental pathology. Infections are life threatening. I have effectively dealt with the infections, according to the recent contrast CT-scan. With Contrast is important. Now to deal with the pain. One thing I have to remember, is the infections have been the CAUSE of this starting 3 years ago and hasn’t been properly addressed until now. So, NOW the pain I can work on, free of the worry of infection. That helps! Nerve patterns can be retrained. I have to wear a mouthpiece with medicine in it, to soak into the Intraorbital nerve! Nice! & my pain specialist has recommended I see him when I get back to Canada; BC. He said he may have a nerve block or two to “show” this nerve how to feel again. Not directly into the nerve but into its ganglion…