travonn what kind of doctor did the biopsie was it a oral surgeon?
An endodontist
Neuralgia Inducing Cavitational Osteonecrosis is indeed controversial. I doubt if more than 60 or so dentists have ever practiced in attempts to correct this disorder. Several have been hounded out of practice by their mainstream colleagues as "quacks". It remains to be demonstrated who is right or wrong in all of this, because there are no reliable statistics on incidence. It is plausible but not proven that mainstream dentists have reacted so strongly to the proposals of Ratner and others because their own financial self-interest has been threatened.
FYI the therapy recommended by advocates consists of opening the gums down to the bone and directly administering antibiotics to the bone cavities where the infection is believed to reside. That is NOT a trivial operation, and has risks of its own.
However what HAS been proven beyond any shadow of doubt, is that dentists and endodontists have very poor training in the assessment of facial pain from sources other than dental abscess, cracked tooth or grossly obvious temporo mandibular joint disorders. When we analyzed statistics of our members who first saw a dental practitioner for their pain, what we found was that in fewer than a quarter of the cases was the pain recognized as non-dental in origin, with timely referral to a neurologist. See the tab "Who Gets Face Pain" under our Face Pain Info tab on the menu above.
Regards, Red
I have also had NICO, although it took a loooong time to address it. I happened upon a dentist who specializes in head and facial pain who was savvy enough to look closer into my dental x-rays to consider that a shaded area could indicate something worse...which he was brave enough to call NICO once he explored further. Even the oral surgeon who eventually took out the dead bone, and had to remove two teeth because of it, called it everything but NICO. Pain I had suffered from in that area for years and years disappeared after surgery!
My dentist explained that it was once a more common diagnosis, until its founder fell to disrepute. Sounds like throwing the baby out with the bathwater to me, when I looked around on the internet. Red Lawhern has some good info on it I believe. He's the main researcher connected with this wonderful site. He helped me back when I was diagnosed and has been a good friend to me for a long time in my journey.
Thank you for the compliment, Judi. From what I've seen of you over a few years now, you've aided many others on the same journey as yourself.
Respectful regards,
A compliment well deserved, my friend. I'm a drop...you're a wellspring1
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Hi,
What tests did you have done to be diagnosed with NICO? I had a CT scan and an MRI and both came out clean (no infection). By blood samples still show signs of local infection somewhere in my body though. My TMJ doctor wants to take a bone sample from the sore spot in my jaw and test it for the presence of bacteria. I'm not sure I want to have this done because it would be the fifth or sixth time someone cut into my jaw and the pain is really not that bad at the moment, but I guess this procedure would give me the most reliable results? Was your bone infection visible on MRI/CT scan or X-rays? What treatment did you recieve? I was told if bacteria was found I'd get antibiotics for that specific bacteria for five or six weeks...something like that. Thank you!
My dentist found a grey spot on an x-ray that my former dentists had said for years was scar tissue from surgery I had as a teenager for braces many, many years ago. ( I had complained about pain in that area for years and years...high up in my gum above my eye tooth area.) The oral surgeon who operated on me way back then, was trying to pull down my impacted eye tooth, but accidentally broke it. He also left a tiny piece of it-- over the years, an infection developed.
This new dentist took the time to find that the grey area on the x-ray was the same spot that sent me into a spasm of pain when it was pressed. He sent me to an oral surgeon who did further, specialized x-rays that indicated something that wasn't quite right in that area. So, he cut into my gum and found infection in the bony structure above my eye tooth area. So bad that it required the removal of two teeth and quite a bit of gum tissue. He refused to call it NICO...didn't agree with that diagnosis although he seemed to describe it the same way. I woke up in NO pain. Some pain did return two years later. He went back in and scraped out some more tissue that seemed to have some necrosis--hopefully he got it all this time--and it did not effect any of my teeth. (he went through the gum.)
I should note that my dentist was great in creating an extended bridge that also has fake gum above it--my smile looks super!
The out-of-pocket expenses were awful. Amazing to me that insurance does not consider teeth to be medically necessary. More than I paid out of pocket for all three of my brain surgeries combined!! But, greatly worth it!!
My dentist might be willing to consult with yours if you'd like to consider that. He's a great guy and stays very up-to-date.
My prayers go with you as you seek to do what is right. It is so very hard to discern which way to turn with these difficult to treat pain disorders. Were it not for my faith, I would go completely and totally looney.
Judi
I have had all kinds of tests most which are negative they understand the symptoms. I have had multiple surgeries to remove the bad bone. It biopsies to be nico. They say the bone is like concrete. I also take lots of meds
including keflex sometimes which does help the pain. Sometimes they add flagyl as well which helps better.
I have been to iu and uk as well my specialist does discussions all over nationally and internationally. They filmed the surgery once and took it for part of a discussion out of the country. This is just frustrating all the time!! I just want it too go away and all I can do is live with it. Just want to see if others go through this all the time. Nice to find others similar!
I wondered at this comment, "It biopsies to be NICO" by Travonn on Thurs. I've never heard of a confirmation of NICO by biopsy, simply because so few in the dental profession will accept this kind of diagnosis. If you read all of the article Cleo clipped above, (thanks, Cleo!) you'll see many terms associated with osteonecrosis of the jaw (ONJ)--NICO is given just a minor point near the bottom. I'd wonder if I were you, Travonn, about printing out this article and showing it to your dentists/oralsurgeons, whoever. Here's the full address: http://jada.ada.org/content/140/7/864.full#ref-146
There are options... plus, I like to keep in mind something the famous Dr. Paul Brand, who pretty much devoted his life to people in pain, wrote, "Only one tenth of one percent of the fibers entering the cerebral cortex, convey new sensory messages, including PAIN messages. All the other nerve cells communicate with one another, reflecting, and sifting through memory and emotion. Am I afraid? What can I learn from this pain? How does this pain compare to others? Do people care about me? Do I have what it takes to make it? How does my spirituality impact my reaction to this?, etc.
This means that PAIN is one part physical...three to four parts mental, emotional, spiritual. WE CAN LIVE WELL WITH PAIN. It seems impossible, I know. I've been doing it for over seven years now...sometimes pretty badly too. But overall, my life is full of joy, purpose, and hope. Even though pain is my ever-constant companion. You can read more about my journey and my hope in my blog (which is supported by this wonderful site) www.GreatPainGreaterGod.com.
We are better together!
Travonn said:
I have been to iu and uk as well my specialist does discussions all over nationally and internationally. They filmed the surgery once and took it for part of a discussion out of the country. This is just frustrating all the time!! I just want it too go away and all I can do is live with it. Just want to see if others go through this all the time. Nice to find others similar!
Judi from Virginia said:
I wondered at this comment, "It biopsies to be NICO" by Travonn on Thurs. I've never heard of a confirmation of NICO by biopsy, simply because so few in the dental profession will accept this kind of diagnosis. If you read all of the article Cleo clipped above, (thanks, Cleo!) you'll see many terms associated with osteonecrosis of the jaw (ONJ)--NICO is given just a minor point near the bottom. I'd wonder if I were you, Travonn, about printing out this article and showing it to your dentists/oralsurgeons, whoever. Here's the full address: http://jada.ada.org/content/140/7/864.full#ref-146
There are options... plus, I like to keep in mind something the famous Dr. Paul Brand, who pretty much devoted his life to people in pain, wrote, "Only one tenth of one percent of the fibers entering the cerebral cortex, convey new sensory messages, including PAIN messages. All the other nerve cells communicate with one another, reflecting, and sifting through memory and emotion. Am I afraid? What can I learn from this pain? How does this pain compare to others? Do people care about me? Do I have what it takes to make it? How does my spirituality impact my reaction to this?, etc.
This means that PAIN is one part physical...three to four parts mental, emotional, spiritual. WE CAN LIVE WELL WITH PAIN. It seems impossible, I know. I've been doing it for over seven years now...sometimes pretty badly too. But overall, my life is full of joy, purpose, and hope. Even though pain is my ever-constant companion. You can read more about my journey and my hope in my blog (which is supported by this wonderful site) www.GreatPainGreaterGod.com.
We are better together!
Travonn said:I have been to iu and uk as well my specialist does discussions all over nationally and internationally. They filmed the surgery once and took it for part of a discussion out of the country. This is just frustrating all the time!! I just want it too go away and all I can do is live with it. Just want to see if others go through this all the time. Nice to find others similar!
Dang it! I was editing my comment and ran over the 15 mins! Because I sound so "above it all"! Geesh! I'm not! Yes, my life IS full of joy, purpose and hope...but I have days when I pretty much shake my fist at God, demanding an answer from Him about why so many suffer! (Particularly ME, who I consider most important! lol) So, forgive me for sounding so very self-righteous!!)
And thanks again, Cleo, for adding the clip about NICO, so that I would go back and reference the whole article--I had never heard of ONJ. And although the Amer. Dental Association may have a classification for NICO, I can tell you with full confidence, based upon my research of it--and I feel sure that Red Lawhern, who serves as the primary science researcher for this site as well as a main moderator will agree--NICO is accepted by less than 5% of the dental world. I would not spend any energy trying to push any dentist into getting a NICO diagnosis. There is a long story behind that...but to simplify it as much as possible, the primary dentist who achieved recognition in treating NICO patients was later found to be a quack--so the "baby was thrown out with the bathwater" so to speak. The great news I hope this article reveals is that ONJ disorders may cover the same things by different names...so we now have many new options for us! Let's inform our dental practitioners! I'm making copies right away!
Here's that article address again:
http://jada.ada.org/content/140/7/864.full#ref-146
Judi from Virginia said:
Judi from Virginia said:I wondered at this comment, "It biopsies to be NICO" by Travonn on Thurs. I've never heard of a confirmation of NICO by biopsy, simply because so few in the dental profession will accept this kind of diagnosis. If you read all of the article Cleo clipped above, (thanks, Cleo!) you'll see many terms associated with osteonecrosis of the jaw (ONJ)--NICO is given just a minor point near the bottom. I'd wonder if I were you, Travonn, about printing out this article and showing it to your dentists/oralsurgeons, whoever. Here's the full address: http://jada.ada.org/content/140/7/864.full#ref-146
There are options... plus, I like to keep in mind something the famous Dr. Paul Brand, who pretty much devoted his life to people in pain, wrote, "Only one tenth of one percent of the fibers entering the cerebral cortex, convey new sensory messages, including PAIN messages. All the other nerve cells communicate with one another, reflecting, and sifting through memory and emotion. Am I afraid? What can I learn from this pain? How does this pain compare to others? Do people care about me? Do I have what it takes to make it? How does my spirituality impact my reaction to this?, etc.
This means that PAIN is one part physical...three to four parts mental, emotional, spiritual. WE CAN LIVE WELL WITH PAIN. It seems impossible, I know. I've been doing it for over seven years now...sometimes pretty badly too. But overall, my life is full of joy, purpose, and hope. Even though pain is my ever-constant companion. You can read more about my journey and my hope in my blog (which is supported by this wonderful site) www.GreatPainGreaterGod.com.
We are better together!
Travonn said:I have been to iu and uk as well my specialist does discussions all over nationally and internationally. They filmed the surgery once and took it for part of a discussion out of the country. This is just frustrating all the time!! I just want it too go away and all I can do is live with it. Just want to see if others go through this all the time. Nice to find others similar!
You are always kinder than I deserve...I am humbled. Thank you, Red, for all you do for others! This site is AWESOME!!
Hi Judy…
This is an old post I see so not sure if you will even see this. I had a tooth pulled, tooth 12, 2 years ago.
It was an old root canal & had an abscess. I went through a holistic dentist in DC & no antibiotics were given however I developed horrific pain 10 days later & if I touch the bone above extraction I press on an area & it hurts. So 2 years later no one sees anything on an X-ray. I live in VA & would love to know who you went to. Which dentist saw the spot. I just need to rule out the extraction site being an issue. That area is tender.