Well since January my 24/7 pain subsided. I was able to get off all meds (Neurontin and Percocets). In February a red spot came up on my gum next to the back molar on left side(TN side). After the "abscessed tooth" was removed...the bone crumbled around the tooth. It had to be debried and biopsied. The oral surgeon said I have mandibular osteomyelitis but he "thinks" he cut it all out!!!
I went to family doctor today. He discovered they did NO culture of the bacteria so we don't know what kind of antibiotic I need. I asked him if this could have been causing myTN pain since August. He said he didn't think so. Everything I read says you MUSt have IV antibiotics for at least 4 weeks with Osteomyelitis and yet he put me on 10 days of oral augmentin. I am so sick of doctors and dealing with something that seems to be "rare" and realizing doctors are not that knowledgeable about them. My doctor admitted he has had little dealing with either TN or OSteo. I judge after reading on Mayo Clinic website and a dental website, I understand the protocol better than he does....but doctors have a problem listening to patients.
I just hope I don't lose more teeth because of inadequate treatment.
I hope everyone on here is feeling peace in all of this...it is so challenging.
I can relate to what you're going through and am really sorry they failed to do the culture of the bacteria. It means now it's all but a guessing game...
I had bone/tissue sample taken this week.... this was after my TMJ doctor said they found nothing on my CT which could be blamed for my ongoing pain, so they'll either trust me that I continue to have pain after 5 apicos in my lower jaw or they'll refer me to a psychiatrist OR I agree with the biopsy, which I did in the end. I've gone through all possible treatments except for tooth extraction (it's my front teeth and not enough space there for an implant).
But what I want to say...my doctor said that if they find harmful bacteria in that sample there is usually 7-8 weeks of antibiotics treatment and they do the culture so that they now specifically what kind of antibiotics to prescribe. This is essential; I had ATBs 5 or 6 times before over the last two years for tooth and jaw pain and I always improved for a while -- days or even a week -- but then started having pains again as soon as I came of the antibiotics. So this is why doing the culture is so important; to know what kind of bacteria you're combating, and also why prolonged treatment is necessary .
I had my wisdom teeth removed which lead to osteomyelitis and was treated with six weeks of IV antiobiotics. I was referred to an infectious disease doctor for treatment as the oral surgeon that diagnoised me said that is their area. I'm not sure if your doctor would be willing to refer you, but I know that infectious disease doctors deal with osteomyelitis and have more expertise in treating it.
Thank you to everyone who responded. You begin to feel paranoid...like a hypochondriac when you have to keep being an advocate for yourself. My daughter has been an RN for 20 years and she is very concerned. She used to do train in IV therapy and she said I really need to have IV antibiotics.
I don't need a referal with my insurance so you guys have given me the courage to speak up for myself... one more time. I am going to call an infectious disease doctor myself.
Sorry to hear you are not well, IV antibiotics are generally the course of treatment for osteomyelitis. I had it in my spine after surgery and developed it weeks after. It probably would have been a good idea to check to see what type of bacteria because it does help with treating the osteomyelitis. Bacteria in the gums/bone can be stubborn. I have been dealing with similar situation since Nov 2012 thru March 2013. Just finished my latest round. I had the bone scraped also very uncomfortable. I thought maybe this was contributung to my TN never really got an answer.
I have lost alot of teeth also, cry every time it happens. Just had another root canal last week, was suppose to,be a crown only. My dentist does listen to me though, hes a good one. Its my former dentist that did most of the extractions left with a mess trying to save what I have. Its tough when the infection digs into the bone. I agree with you that they need to listen and read up like we do. Information is such a powerful tool. Good luck to you and hope you feel better and peace to you also
No. a biopsy showed I have infection in the jaw bone. they did a bone scan today and it shows the same. Going to GP friday...hopefully he will put me on the IV antibiotics I need to clear this up! Jab jaw said:
Are you sure that the ongoing tooth/jaw pain is not from the TN
I myself am starting to hate the medical community, I mean I'm sure out there are some wonderful doctors who would take the time to listen to their patients and show a little more care and compassion, but from my experience that is not the case. And I've seen it all with my aunt who has many chronic pain diseases, she has lupus, possibly scleroderma, and countless other things that are going on with her and it's horrible to watch these doctors just not take the time to listen to her or explain anything. They just want to do whatever is easiest and send her on her way. It's ridiculous.
I guess it just takes a lot of searching to find the right doctor, which is really hard when you feel so bad and are really concerned about your health. It's tough. But I really hope things turn around for you! It's easy for this kind of stuff to get you down, but in the end things always work themselves out, and I'm sure everything will work out for the better! Keep on staying positive and I will be sending all of my good wishes and positive thoughts your way.
Just an update! I went to an infectious disease doctor and am currently on 8 wks of IV antibiotics!! Please keep searching until you reach the right doctor. I could have lost more teeth and jawbone had I not went to the Infectious disease doctor!!
Yvonne, good for you IV antibiotics will hopefully kill the nasty bacteria and you will finally begin to feel better. So many things can happen if its not addressed. Keep updating us on your progression. Good Luck to you and feel better!
Can someone tell me about this osteomyletis?? My issues really exploded after my root canal. I have found when I am on a z-pack- I feel better for a while- then it all comes back sooo much worse. My root canal was done in January. I have a small knot that rolls behind my ear. Would this show up on a dental x-ray??
Osteomyelitis is simply an infection that gets in the marrow of the bone. Because there is not much blood flow there, it takes weeks of IV antibiotics to get it under control. An MRI and bone scan showed the inflammation in my mandible bone.. I also had a biopsy of the bone when they removed my tooth. They thought I had an abscessed tooth and pulled it but the bone crumbled when they pulled it, that was the first clue. The knot could be a lymph node that is inflamed from the infection. I felt better on antibiotics but the pain in my jaw and the fluish achy feeling always came back. Go to an infectious disease doctor. They are the best equiped to deal with Osteomyelitis if you have it.
beekeeper said:
Can someone tell me about this osteomyletis?? My issues really exploded after my root canal. I have found when I am on a z-pack- I feel better for a while- then it all comes back sooo much worse. My root canal was done in January. I have a small knot that rolls behind my ear. Would this show up on a dental x-ray??Hi
There is no infectious disease doctor around here. Could I begin w/ my dentist or should I begin w/ my family doctor? I have the flu-ish feelings and the pain is unreal. I am not sure at this point what monster I am fighting- TN or this osteomyelitis after the root canal? Do I have to have MRI contrast dye_? I am allergic to this.
Osteomyelitis if not treated with right antibiotics does not resolve. It happened to me recently with my canine tooth, had the root canal then it abscessed put on antibiotics off and on for months. Dentist had to go in to remove the tip of the root because the infection created its own fissure and infection came out adjacent to the tooth. We tried everything. Finally changed to another antibiotic which so far has worked, but keeping a close watch on it. Everytime he put me on antibiotics within a couple of days it woukd flair up again pain and abscess atfissure site. It found its own little pathyway to drain. He eventually had to open the gum and scrape the bone to clear the infection. Went on antibiotics two more times and its been 2 1/2 weeks no problem. I have a great dentist who has been working with me these past 4 years since my TN diagnosis. I even have his phone number to text him as soon as I know I was in trouble with my tooth. Came in on a Saturday to see me. After a major operation they irritated the lingual nerve when they put the breathing tube down my airway and had me on my left side which has TN. He was going to come to my home for a house call just to check my mouth. Hes amazing, I am lucky. Try your dentist if you thinkmits your tooth, dont wait call right away, if its an infection dont want to get sick from it. The fact you say you have osteomyelitis its a good idea to see him and let him correspond with your doctor tomlet him know whats going on. This way your doctor can guide you from there whether you need IV antibiotics, which you might need. Keep us posted and let us know how you made out. Goos Luck to you!
I don't know if it's osteomylitis- I just know that it all began in November w/ what I was told was ear infections. Took so much anti-biotic- had root canal in January and it all exploded. When I called my family doc y'day she said I had to wait to see the neuro. I'm really rather sick-- and have the facial pain. I'm going to phone my dentist if I haven't heard from him in a couple of hours. I have his cell phone number. I think the office is closed due to spring break in my area. Sigh. I wanted to really see my family doc y'day. I was certain this was TN- b/c the ER doc said it was. I had a CT scan of my brain and ear-- alll normal. I don't know now. Just running in circles lately. I wonder if there is a support site for people who are quite sick but they don't know WHAT is wrong and can't get a clear answer--- and few tests. ?
It is so frustrating!!! But hang in there! If this 8 wks of antibio doesn't do it for me I am going to Mayo clinic. I have heard wonderful things about them and mystery illnesses. Your scenario sounds very similar to mine.
I started out with severe pain in jaw shooting to ear. Went to ER and Neurontin helped so I got the TN doagnosis in ER. Neurologist confirmed but after months of nothing showing on cat scan and xrays, the bone finally deteriorated enough to show on xray. Trip to oral surgeon and he pulled tooth involved. The bone crumbled and was biopsied. Then an MRI and body scan confirmed the oral surgeon did not get all of the infection so 8 weeks IV. Just keep pushing. I had to take 3 or 4 advil every four hours from Dec to March just to keep down body aches and flu feeling so I could function. After 2 wks of IV's those 2 symptoms are gone. Still really weak though.
It really is just a process of elimination and unfortunately we are the ones who have to keep pushing to get test run.
beekeeper said:
I don't know if it's osteomylitis- I just know that it all began in November w/ what I was told was ear infections. Took so much anti-biotic- had root canal in January and it all exploded. When I called my family doc y'day she said I had to wait to see the neuro. I'm really rather sick-- and have the facial pain. I'm going to phone my dentist if I haven't heard from him in a couple of hours. I have his cell phone number. I think the office is closed due to spring break in my area. Sigh. I wanted to really see my family doc y'day. I was certain this was TN- b/c the ER doc said it was. I had a CT scan of my brain and ear-- alll normal. I don't know now. Just running in circles lately. I wonder if there is a support site for people who are quite sick but they don't know WHAT is wrong and can't get a clear answer--- and few tests. ?