Hi there,
Anyone done research on NICO - neuralgia inducing cavitational osteonecrosis? The bit I've read about it sounds interesting, given my situation and history of infection in the jaw bone at the base of a molar. I understand, though, that in the medical profession, it's a bit of a contentious diagnosis. Of course, fibromyalgia and ATN used to be as well! Just curious...
Ducky
Hi Ducky,
Do you have a link for the article you read (if it's availabe on the internet)? I'd like to read it, would you please share it? Many thanks,
Oldriska
Hi Oldriska,
It's on Wikipedia. There are a bunch of medical journals which I've tried to read as well, but they are pretty in-depth and beyond me! The Wikipedia entry is pretty basic though, and outlines the 'theory'. Check it out and let me know what you think!
Ducky
Ducky,
this is very interesting. I have a history of bone infection in my jaw and I experience pain where the infection (now according to x-rays completely gone) used to be. My symptoms are those of ATN...on good days I get dull, aching pain, on bad days the pain just makes me want to jump out of a window. All the while I feel as if there was a hole in my jaw which causes discomfort, and there just as well may be after the surgeries I had! A doctor at a pain management clinic after hearing my story suggested that I could actually have necrotic jaw bone; she said that x-rays are too low grade to show most subtle changes to the bone - so far x-rays are all I had. She told me about a boy she once treated who suffered with a horrible pain in his leg, whose x-rays came out perfectly clean. Then they run a CT scan which showed the bone was virtually just dead cells. This may be a bit exaggerated, but I do believe - and we all know that - that technologies are not perfect and some diseases may just go undiagnosed because of that (or because of doctors who are not thorough or interested enough). Having said that I had all sorts of blood tests done and they showed only minor deviation in the count of white cells and some minor inflammation somewhere in my body. If you have a necrotic bone you're body's reaction would be more severe,I think. Still, I'm getting an MRI done to see if there is any residual inflammation in my jaw. Having read the wiki article now, it seems a CT scan could be more a more effective way to determine if there is something there. Maybe I'll ask for both! By the way, have you had any blood tests done for signs of inflammation?
Hi Oldriska,
I know, it's crazy, isn't it?? I have pushed for two years to get the CT and MRI for the very reason that I think it's an infection in the bone, but nothing ever shows up. I've had a few blood tests for infection, but just a slight increase in the while blood cell count. I've begged my doctors for antibiotics! Last March, I had a flare up that made me absolutely sure it was a bone infection - I had swollen glands all over my body, severe pain in my jaw and heading down my neck and up into my ear, body aches and a low grade fever - all symptoms of an infection, and still, nothing showed on x-ray. My CT was less than a month after that episode. A family friend of my parents had a jaw bone infection years ago, and was on a heavy duty antibiotic for 6 weeks to get rid of it. Apparently bone infections don't disappear as fast with antibiotics because of decreased blood flow in the bone. After 4 years with this, and all negative signs on x-rays, CT and MRI, I still believe it's an infection in the bone, but doctors don't believe me, and aren't willing to put me on heavier antibiotics. Since this started 4 years ago in Sept., I've been on antibiotics 3 times, and I'm sure it got better after the last course. Last summer I had a 'remission' that was the most fabulous thing! I actually had 2 whole weeks with NO pain, zero, and it was heaven. It came back rather slowly, but still, it was 3 months or so of actually enjoying life. I don't know. I would think that infection would show up eventually, but the cavities in the bone are so small. You see my interest in the subject!! It sounds like we have similar issues. My parents live in Victoria, B.C. (I live in Newfoundland, other side of the country), and like typical parents, they have talked to their dentist about me. He is very interested in my case, and I'm thinking about flying out to see him. I have also heard about laser treatment of the jaw bone to 'kill' any infections, but that is even more contentious than NICO! I don't know what to do. Every time it flares up I'm positive that this will be the time that it shows up on x-ray and I can finally get on a good antibiotic. I would love it if someone with a medical degree would read some of the in depth journals and give their opinion on this. Hopefully that will happen! If you find anything else out, let me know.
Ducky,
Funny that you should mention antibiotics! I had 5 courses of antibiotics from January till March this year and every time except for the last time there was a noticable improvement in how I felt! In fact, antibiotics was the only medicine that helped my pain, different kinds of OTC pain-killers did absolutely nothing. Of course I mentioned this fact when I was talking to my neuro and she just nodded her head as if to say this is what happens with TN (and she diagnosed me as an ATN case). I'd almost bet that if I was put on antibiotics now I'd start feeling better within a day! The one thing that confuses me though is that if you have infection somewhere in your system, usually the pain gets worse during the night. My jaw is perfectly painless at night, it starts hurting about 5 mins after I wake up in the morning - this is said to be common with A/TN. Is your pattern any similar to mine?
The swollen glands over your body are puzzling - they were probably due to infection (which may have been anywhere in your body and sometimes infection travels around and settles in different places in our bodies) or it may have been an allergy to something, it's hard to tell. One way or another, your body was probably trying to fend something off at the time.
I think this is a subject worth exploring and I'll try to read more on it! Will keep you informed if I find something.
Take care,
Oldriska
Hi Oldriska,
I am the same - no pain at night (unless in the throes of a really bad attack) and it starts between 5 minutes to 30 minutes after I get up. Eerie how similar it is! I believe that swollen glands thing was the jaw in combination with a flu virus maybe. The area around my jaw pain was a bit swollen and very hot to the touch, which is why my dentist got me a CT within weeks of that episode. Usually the wait is longer. As I said, my blood work was only slightly elevated white count though. I see the neuro again in Sept and will tell her my latest try of Tegretol didn't work and that I'd like to try an antibiotic. I understand that it's drilled into them now not to prescribe antibiotics too much because of all the resistance build up, but I think this is a case that warrants a try! If 6 weeks on a drug that I could take while working could end my 4 year saga, why not?? Yes, do read more and let me know. It interests me very much!
Ducky
NICO is quite a controversial disorder. Mainstream dentists and endodontists have actually gone out of their way to professionally ruin and discredit the relatively few dental practitioners who have advocated for this "disorder", based on the work of Radnor and others. The reason for this pitched battle is quite possibly one of financial self-interest, as one of the causes of cavitational osteonecrosis is believed to be infection introduced by negligence during root canals. Some of these issues are well illustrated in the Wikipedia entry on the subject:
http://en.wikipedia.org/wiki/Neuralgia-inducing_cavitational_osteonecrosis
Regards and best, Red
I asked my doctor about it a while back, and he explained why he doesn't believe in it. He said that when the caverns are cleaned out, people think they get relief, but that's just because the nerve endings have been removed, and that they quickly grow back and the pain returns.
He said they looked at the jaws of "healthy" cadavers who never had face pain and compared them to people with face/jaw pain, and found that EVERYBODY has caverns, and he feels he's adequately studied it and it's not legit. (He actually did the studies himself and discussed the results with me in-depth, and I'm not doing him justice by trying to explain what he said.)
The bone cavities that Crystal refers to actually occur in all human beings. They are not created by or specific to face pain. These cavities provide a distribution channel for nerve endings of the Mandibular distribution of the trigeminal nerve. The mechanism that advocates for NICO are claiming, is the introduction of bacteria into these cavities by dental surgery, and the gradual spread of infection and inflammation along the nerves within.
A basic issue with NICO is that the development of facial pain is very often at a remove of years from the possible introduction of bacteria into the bone cavities. And that long time frame is suspicious, in that there is no other known slow-developing infection processes in other areas of the body that has similar outcomes.
Regards,Red
I though I had the same thing NICO myself because the first time I felt TN, it only lasted 2 months August to Sept., and it stopped. Then a year later I felt TN again in November but once the wheather got cool outside, the TN pain went away and I believe I was given some type of antibiotic for something else. Then this year in April the pain started all over again and I went to see my dentist who referred me to a Dontologist, because I kept feeling pain on my upper molars, which have a bridge on and wanted to be sure it wasn't NICO and the fact that I did not want to accept that what I have is TN, mind you, I still don't accept it. Anyways, the dontologist gave me antibiotics and told me I needed a root canal on the back tooth, which looked very clean on the x-ray according to me, the one that looked like something was all around it was the one in the front of that one. Anyways, went home and took all the antibiotics like he told me, I even tryed stop taking Trileptal, or any epilepsy med just to proove to myself that it was the tooth. The tooth started feeling normal and I said aha, my theories were right, then the pain moved to my bottom tooth and jaw, and including my bottom lip, which stab from within and it throws the stabbing pain all the way to my temple everytime anything touches it. That's when I realized I was wrong and had to get back on the Trileptal which is the only one that calms the nerve at least 80% of the time to a level 7 or 8. There goes my theory, wrong again. Now I'm looking into Arteriovenous Malformation (AVM), because when this started I had been outside in 100% weather, getting a hotflash and feeling like my heart was rasing and had not drank any water that day That night, I started getting the first signs, which was numbeness on the tipe of my nose and it was downhill from there.
Hi Red, I'm so glad you chimed in on this! I'm fairly new to the site, but still knew that you were 'the man' in regards to information. I really believe it could be NICO that I have. Based on my documented dental issues and my symptoms since then, it just makes sense. Unlike Mitzi above, my pain has never migrated over 4 years, not even a centimetre. And the pain is so like a legitimate infection I had at the base of a molar that was very apparent on x-ray, in the same area, even, that anything else just doesn't make sense. Not just that but the other symptoms I have of a low grade fever, cold sweats, body ache, especially in my hips, knees and ankles, edema of the ankles and feet, and swollen gland during flare ups of pain. I have not mentioned it to my GP, as he doesn't even acknowledge ATN, but I will try my neurologist in September. She is a very smart lady, and I know that if she doesn't know about it, she will go and find out all she can. I can't see any big issue with just at least trying a 6 week course of antibiotics! So many times over these 4 years I've sworn that the pain is so bad that now it MUST show up on x-ray but it never does. When I first read about NICO I thought that explained it. If there are even two cells of infection in a cavity, it'll cause pressure and then pain. I'm going to keep looking into this. Or I will fly 3000 km to see my parents' dentist who actually believes it exists. Thanks!
Ducky
Hey Crystal,
As Red says, all bones have cavities in them, or are porous, but it only takes a tiny infection to cause pressure, and it can't be seen on x-ray. This makes me very suspicious! Further research is definitely warranted, I believe.
Ducky
crystalv said:
I asked my doctor about it a while back, and he explained why he doesn't believe in it. He said that when the caverns are cleaned out, people think they get relief, but that's just because the nerve endings have been removed, and that they quickly grow back and the pain returns.
He said they looked at the jaws of "healthy" cadavers who never had face pain and compared them to people with face/jaw pain, and found that EVERYBODY has caverns, and he feels he's adequately studied it and it's not legit. (He actually did the studies himself and discussed the results with me in-depth, and I'm not doing him justice by trying to explain what he said.)
Ducky,
Just to say I also experienced fever, hot flushes and cold sweats, at one point I wasn't able to do even light housework without sweating all over (which isn't like me). I didn't see my GP then, just got some more antibiotics from my dentist - he didn't have any issues prescribing me those, but he always gave me enough to last only for 5 days or so. I also find disturbing that the left side of body has gone "weird" over the last months. First it started with my tooth/jaw pain, then my jaw joints (with left side being more affected than the right side), left side of my neck has constant swelling, left shoulder hurts and most recently my left hand is very painful - it started with one knuckle, so I was paying little attention to it but now it's all hand up to the wrist - feels as if the bones were fractured, sometimes it's impossible to open bottles etc. I thought it's maybe all due to my jaw discs being dislocated so didn't mention it to anyone as yet.
By the way, when I had my first root end canal surgery in July 2011 I didn't get any antibiotics prior or after the surgery and half a year later when I was complaining of pain on a mothly basis it shows up on an x-ray that the tooth wasn't properly filled in before surgery, only had a temporary antiseptic filling which was, by then, 5 months past its use-by date. Of course they had to re-open the tooth and do the whole thing again (execpt for the root end surgery, luckily!) Wonder if this episode could have added up to my current problems.
Best,
Oldriska
Hi oldriska,
Wow, it does sound that we have very similar cases. My pain is in my right jaw, and I often have swollen glands on my neck on that side. The sweating is the biggest indicator to me, just the past few years I’ve noticed it, usually on my scalp and forehead, and it happens when it’s not even hot out. You and I need to compare notes when we next see a doctor! I am seeing my neurologist Sept 17 but am going to try to move it up. I’m just home from my job now at almost 4 am, and I talk for a living and do shift work, and tonight was really tough. I can’t take anything more than Tylenol or Advil before or during work, and neither of those do a thing. I’m having a really bad jaw month! I would so love to get on a long course of antibiotics. That’s my next plan. I just finished a month trial of Tegretol at 800 mg, and I had a really bad flare up after two weeks, so I need to try something else. Not sure how much longer I’m going to be able to continue to work like this! Please, keep me posted if you see your doc first. I am desperate for info/ideas. It’s nice to know someone understands my frustrations about this, not that I would wish this on anyone! Take care.
Ducky
Hi Ducky,
I'm so sorry to hear that you're having such a bad jaw month! It must be very hard and frustrating not being able to take anything more than Advil or Tylenol due to your job. I've had a relatively good couple of days and hope it will stay like this for the weekend as I'm planning a short trip. But with this pain you just never know - one day you're doing ok and then the next your down with pain. I'll probably get to see my neurologist before you see yours; I don't have a date scheduled yet but she works in the same building as I do and I can pop in whenever I get my MRI results back. I've made up my mind that even if the MRI doesn't show anything unusual I'll still try to get a second opinion/get a CT scan or do more research on my own. I just don't want to settle for an ATN diagnosis until other possibilites have been ruled out. Maybe you could try some natural "antibiotics" till you get to see your doctor - I know they might not do as much as the "proper" stuff or they might not do anything, but they're foods or food supplements so at least they should do no harm. I really hope that you'll start feeling better soon! I will let you know the outcome of my MRI and what my neuro says, please keep me posted too.
Take care,
Oldriska
Ducky, when you see your neurologist, please give some emphasis to your whole-body symptoms and ask if you should be evaluated for auto-immune disorders like Lupus. There are overlaps between your symptoms and those reported by Lupus patients.
Regards, Red
Thanks Oldriska, for the sympathy! I appreciate it, especially when things are so bad. Good point, Red. I will do some research on lupus, too. If nothing else, going to my neurologist prepared will prevent that sort of useless conversation that I've had with on GP that I just have to accept I have ATN and learn to deal with it. I'm not ready to 'give up' looking for a solution, rather than just trying to deal (ineffectively) with the pain! Thanks.
Ducky
Hi,
I've just read a rather thorough article about NICO in an online medical journal; it was actually discussed in relation to patiens with cancer in the area of their face/head who receive radiotherapy and who, according to the article, develop NICO in 6% of cases, often weeks or months after the RT treatment. NICO is most often located in the retromolar part of jaw and patients with teeth develop it 3x more often then toothless patiens; this is said to be related to extraction of molars if the extraction is necessary due to the cancer or treatment and also to chewing which causes microtrauma to the affected bone. Other factors that play role are said to be alcoholism, malnutrition, poor dental hygiene, use of corticoids and bisphosphonates (not only in cancer patients but also when used e.g. to treat osteoporosis), injuries of mouth/jaw, cavities in teeth, and dental work (!!!) , such as extractions, root canals, surgeries. It's written there that it's very hard to treat this condition; treatment consists mostly of giving the patient antibiotics long term (klindamycin - it will be called something else in the English speaking countries, I think) and ciprofloxacin, or aztreonam or meropenem. Also, oxygen therapy was mentioned as a supplementary treatment where surgery to replace some of the bone/soft tissue is needed. However, surgery should be avoided when possible as it could make the "disease" progress. It also says that due to the condition being so difficult to treat it is mostly the symptoms that are primarily treated (this is not great news and it doesn't say if it can be treated 100%). I was given Dalacin, which contains the above mentioned klindamycin, for my dental problmes and the pain was gone really fast....it returned a couple of days after I finished my course (every time my course lasted only 5-7 days, which is a very short term for antibiotics). For me this is definitely something to talk about to my neurologist. I might print out the article and ask her if she'd be willing to read it and consider if this could possibly be the cause of my ongoing pain.
Oldriska, who were the authors and what was the publication, please? I'd like to trace the professional connections to know who was speaking and from what basis of practice experience.
Regards, Red