Would osteomyelitis cause the feeling of pressure in the jawbone? I feel a buildup of intense, ready to explode pressure, and then a release back to a dull ache. It remains this way for a week or so until the next episode. The overall situation is getting worse with more facial swelling and lymph node enlargement. Does osteomyelitis present this way? Thanks, all.

I am not sure I have Osteo but I have the same symtoms as you describe and more. I am looking into osteo but it is tough as doctors are very tough to work with. How are you doing and what are your symtoms in detail?

I experienced bone pain with submandible swelling following placement of a perm crown (tooth 18 last left molar) one year ago. It was sporadic at first but is now constant. the pain level ebbs and flows. I've had x-rays, pano's, CT all looks good. My lymph glands are often times swollen in that area. I've seen dozens of dr's and yes most are difficult. They pass it off although I've found a few that have been wonderful. I'm now thinking it's the tooth in front of it #19. I know it doesn't make a lot of sense but when I had #19 crowned recently it was very inflammed. When the same tooth was RC'd, same thing. It was suggested I extract #19. Last week I was told to extract #18. Maybe the focus has been on the wrong tooth. Even though both look fine tooth #19 is painful and maybe this is enough of a reason. To further complicate matters I was given a block recently and was told it wasn't a tooth at all. ????????? I don't understand why I can't get two dr's to agree on anything. My face is swollen and it's fairly obvious even to strangers but most dr's claim it's "normal." What is your story?

Five years ago I had work on 14 18 and then they both developed periapical lessions. Had the lessions (infection) removed and my feeling of fullness went away as well as my lymph node feeling swelling. Both not seen by others but felt by me. After no symtoms for two years it returned and I have now had both teeth removed only find the symtoms remain. I too had CT,MRI, conebeam, x-rays,tomograms, paperramic exrays (sp) and a lot of doctors to only say nothing is wrong. I am working with my family dentist now hopeing we can figure something out. I am thinking a low grade infection in the jaw bone. Have you had a conebeam CT scan?

Is that you Stephanie? I think I may have ticked you off on another thread because I was questioning exactly what is going on with you. Forgive me for my caution. I had an incident on another board in which the person was making stuff up about being sick. It was a bad experience and very cruel of the person to do that when she knew I was so sick.

I like the name. I agree that it is in your best interest to be persistent. As far as doctors being difficult, you are right, they are when they don't know what to do. The biggest problem we run into is the cosmetic issue with the jaw. No doctor wants to destroy a young woman's looks. Nevermind that there are options to restore the bone and the teeth, etc, they almost would rather we die (I say this with a little bit of jest, but I really feel this way). If you have bone infection, it is extremely hard to get rid of. Have you looked into whether or not you have trigeminal neuralgia or neuralgia? Has anyone ever mentioned this to you? I would think infection is more likely given the history of infection, but you never know.

Anyway, I am still around if you wish to reply. I hope you continue to search for answers. I know there is someone out there who can help. I know you had an infectious disease appt and I can only guess that either you didn't go or the doctor refused to do anything for you.

regards.

Five years ago I had work on 14 18 and then they both developed periapical lessions. Had the lessions (infection) removed and my feeling of fullness went away as well as my lymph node feeling swelling. Both not seen by others but felt by me. After no symtoms for two years it returned and I have now had both teeth removed only find the symtoms remain. I too had CT,MRI, conebeam, x-rays,tomograms, paperramic exrays (sp) and a lot of doctors to only say nothing is wrong. I am working with my family dentist now hopeing we can figure something out. I am thinking a low grade infection in the jaw bone. Have you had a conebeam CT scan?

My dr didn't feel conebeam was necessary. In my case when I experience pain tooth #19 hurts. The confusion is that this issue began when I had #18 crowned. ??? I know how frustrating this can be when your face is swollen yet is not seen by the dr's. Very sorry to hear that you had 2 teeth extracted with no relief. It could also be a soft tissue infection. Does Motrin help? Have you seen an oral surgeon? Antbiotics?

....just thinking. Do you have issues with occlusion and possibly putting uneven pressure on certain area of your mouth? This could cause some local areas of pressure and swelling or blockage of glands. I was told to try splint therapy and maybe this would help.

Also, have you checked to see if your salivary glands are obstructed. There is a dye test that would identify this issue.

Yes I have looked into all those ideas only to find nothing. I am glad that you found the tooth causing the problem. WIll you get that tooth fixed if so let me know your outcome!

Nice to hear from you Susan. I have looked into that area and it was said that I did not have TN. I am working with my general dentist right now and I hope he can help. How about you how are you with your problem. Are you in any pain?

Lots of pain. Have been for years. This has gone on for years. Left in a horrible state, but dealing with it. Take pain meds, it helps. I recommend it to at least take away the anxiety which eventually develops when you continue to have pain and no answers as to what is causing it.

Very difficult to diagnose a bone infection in the jaw, either difficult or doctors just don't want to deal with it. I think a little of both.

Keep pressing for answers. I don't know what a general dentist can do for you, but it is kind of your dentist to help you look for answers. I hope he is able to help you.

I know your scan was showing something, so I don't quite understand docs ignoring it. Then again, I had the same thing. Long, long history spanning the last 6 years of my life. I didn't think I could live 1 week with pain and here I am 6 years into it and still dealing with it. It is truly amazing what the human body and spirit can endure in order to continue to live what is really a wonderful live. I feel blessed that I am still alive, but not blessed to be sick. That is the sucky part. If it had to happen to someone, why me? Then again, why not me? Not sure there is a real answer or cure to jaw pain if it is infectious in nature.

I am sure you have said this before but can you describe your pain that you feel. I am sure everyone feels pain differently.
I am set to have a Indium white blood study very soon. Apt. set up by my ENT who does not think I have a bone disease. I read that TryingToFeelGood did not have much luck with it but it is worth a shot. Not sure if you are familiar with his story.

Stephanie

I am sure you have said this before but can you describe your pain that you feel. I am sure everyone feels pain differently.
I am set to have a Indium white blood study very soon. Apt. set up by my ENT who does not think I have a bone disease. I read that TryingToFeelGood did not have much luck with it but it is worth a shot. Not sure if you are familiar with his story.

Stephanie

I had that scan done as well and in my humble opinion it is useless. Don't waste your time. Ask an infectious disease doctor about that scan. I was told the scan is for gut infections, not for bone infections. You may have more luck with a gallium scan, but here is the thing with a bone infection.... blood flow is often compromised and this makes it difficult for the gallium and the white blood cells to get into the site. Did you have a bone scan? MRI with contrast? I think both are superior; however, bone scan will light up if you had any recent work in the area-- extraction, root canal, etc.

My pain is difficult to explain, pressure, pulling sensation and i just feel sick. I feel "infected". I am not sure how to describe the feeling of infection. I have had this so long that pain is a difficult thing for me describe.

I know Trying To Feel Good and TTFG had a bone infection, in spite of the negative scans and the bone was debrided a few times and IV antibiotics were administered. TTFG has nerve damage from the illness and still deals with the after effects of that... pain and effect on the emotions and overall life.

No one thought I had a bone infection either, but I did and do. One thing my counselor always tells me and told me thru all of this is "follow your gut". She also pointed out... "If it walks like a duck, talks like a duck, then it is a.... duck."

Have you also had a bone scan too? My ENT said since I had a tooth extraction that I need to wait. I am lost on what to do. My infectious disease doctor, who I saw twice, had nothing to offer me. He said those exact words too.
I know what you mean about the pain being tough to describe. I do know that it gets worse when I eat things like chocolate, cookies or things that have surgar. Have you noticed that?
So as of right now what are you taking for the pain, and are you seeing a doctor who is working with you on how to find it?

Bone scan- yes, several. Dismissed early on and even later on.
Pain management clinic- I recommend it highly. You may want to try this route while you are trying to figure it out.
Infectious disease doctor-maybe when you get another scan might believe something is going on. He sounds like a typical infectious disease doctor.
Cone Beam CT scan? Why are they ignoring the results?!?
Chronic osteomyelitis is not a riproaring infection and will not show up like an acute osteomyelitis does. There is a huge difference that doctors do not quite understand.
Infection in the jaw is hard to diagnose and even harder to treat/cure.
What about a gallium scan? This is the correct test rather than an indium- white blood cell study test, but you want to make sure it is ordered correctly and that you are checked for acute and chronic infection. If they only check for acute, they will not do the test properly.
Maybe go to a university setting where they are better equipped to work together?
Have I done that? No, so I not practicing what I preach.
I do not have a recommendation on what university to go to.
Can you just try another antibiotic and/or antifungal to see how you do on it?
Mexico? I did it and I know many who have. You can buy antibiotics there without a prescription. I do NOT know if it is legal to bring them back to the US or not. You also can't be certain you are getting the real thing, but a dear friend of mine pointed out that the people who live there buy their meds in the same pharmacies.
I wish I could guide you better, I found a lot of trial and error and a lot of searching out of answers. I also ended up hooking up with other people similar to me and got on the phone to find out what protocols they were using and who the recommend for treatment. I was on different boards so we were able to contact privately and get phone numbers once we were comfortable with knowing who we were e mailing. I made a few really good friends this way and we no longer suffer alone as we have each other to talk to on the phone and compare notes with. I met three of my friends in-person and it really helps with the mental/emotional issue of having a difficult, illness to diagnose, treat and cure. I can talk to my friends who don't ahve this and they just don't get why it hasn't been cured after so many years. The conversations are always the same, " I don't understand why.... How did you get this? Don't do pain management, you can become an addict... Why don't they just cut it out? Why don't they just try another antibiotic?" Underneath it is.... pity and happiness that it wasn't there lot in life to get this horrible disease and underneath that is a total lack of understanding and sometimes of compassion. I mean, how can I be sick when I look healthy? I got that question from a doctor or two as well. It goes like this, " You are a healthy young woman, how did you get this? You can't have it as there is no probable cause." No probable cause is a joke. I got it because the bone was exposed to the mouth bacteria which got into the bone and infected it. I got it because I had a holistic dentist inject some homeopathic remedies in the site. You don't do that. It causes damage and yes, infection. Many docs don't understand that the bacteria that causes osteo are not exotic and are in fact the very bacteria we have in our mouths.. strep, staph, actinomycosis, etc.
Do you have infection? I don't know. I hope you don't. It is a roller coaster ride. I am not trying to scare you as someone else on this board told me I was doing on another thread. I am being a realist and I am painting the picture of what it is. It is a roller coaster ride. Do some get better? Yes, they are the ones who are not posting on these boards as they got well, were so relieved and never wanted to talk about it again. I can't blame them. I feel very similar. If I ever get cured, I may write up my story, post it somewhere that can be found via a web search and then be on my merry way. I can dream and I will continue to dream and fight for what I want. Be PERSISTENT!

Thank you for all the information. I hope to hear from the lady from Boliva to hear what tracer she used (cipro .....something) My doctors do not seem to know what it is. I hope she is doing well.

The wht. blood cell study seems like a waste of time. I need to think about that more. Why do they do these tests if they do not work for that part of the body. My ENT said he called the radiolgist and he said for me to do this very test.

I mentioned that surgar makes mine worse. Have you noticed if it or anything else makes it worse?

thank you for your kindness,

Stephanie

Stephanie,

I don't know about sugar. I never really paid attention to it. I do know stress makes it worse and so does being off antibiotics which I have tried too many times.

Many doctors do not like to be questioned about tests they order, etc. It sounds like the ENT may not have a clue as to what to do, so he is just ordering tests to cover his butt. I just know my infectious disease doctor said the WBC study was the wrong test. My friend who has had this illness for 8 years had a WBC study and it turned up negative as did the gallium scan, so tests are not the most reliable. She also had an MRI that didn't show an abscess that was found a week or two after the MRI when she had the site opened up by her surgeon. The thing with tests is that they aren't always reliable and the only real reliable thing is to open it up to see what the heck is going on in there. With that said, not sure you want to start doing that either.

What antibiotics have you been on?

Susan
PS Let me know if you get my reply.

I did get your other reply thanks. I replied with a few more questions if you do not mind.

So this person that you speak about that was opened up did she heal after the operation and have no symtoms?

Have you been opened up to look at the suspected area?

I have been on several like antibiotics. I took several courses of amoxicillin from Mexico and from doctors. I also have had clindamycin and some levaquin. How about you what kind have you been on?

It would be interesting to hear if cutting out some surgar would improve your symtoms. Stress does make mine worse as well.

Stephanie

Stephanie,

My friend's story is very, very long. I do not mind you asking me questions. I am happy to give you any feedback and information you need to try to get well again. I understand how utterly frustrating this can be. In any event, I did not receive a reply, so please try again.

Thanks,

SusanL95

Okay I tried again. I wonder what happen to Giggi! Is she still out there?

I wonder the same thing. I have seen lots of people come and go and just disappear. They sound so desperate for information and then they just go away. It is a bit disappointing.

Thanks for the other reply. I will reply back very soon.


My hope is when people find that cure they share thier story (knowledge) to help others.

What about Maggie?

BePersistent,

I think you are referring to me in your last post...I have been very busy lately with other problems in my life. but I wanted to quickly reply. I did indeed have the lower right socket opened up (old wisdom tooth site) back in September '07. It turns out that I did NOT have osteomyelitis, according to the oral surgeon and the pathology/biopsy report. What happened is that the original surgeon didn't properly clean out the socket, and left some "debris" behind (whatever that means)...then the bone didn't fill in properly, and I had these jagged edges in the area, some *mild* throbbing pains, etc...it was never anything severely painful.

Anyway though, I agree with Susan that a lot of dentists/doctors are just clueless about these things. I did have a cone-beam CT scan done, and that showed an abnormality in the area, but as Susan stated, you never know exactly what the problem is until they open it up. Of course, if you strongly suspect an infection, you have to be careful...if you don't get the right surgeon, you could end up making it worse by opening it up and spreading the infection. I went to Massachusetts General, and they have some excellent oral surgeons there. Hope this information helps!

MaggieMay

My family dentist want me to see an oral surgeon and I think the game plan is to do a culture. Do they open you up for that? I canot seem them swabbing the area without doing that since it is inside my jaw! Guess I will have to wait and find out!

Stephanie