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Old 01-07-2008, 06:55 PM   #1
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Osteomyelitis of jaw and pregnant, please help

I just posted an insanely long reply in another thread sharing my story but want to try and condense it here....basically I am 6 mths pregnant and was told I have osteomyelitis of my jaw. I have had severe excruciating pain in my lower left jaw since May '05. I felt it breifly before that in July of '04 but it went away after a few days and it since it has returned I have not gone a day or min w/out it. It has only gotten worse. About 7 yrs ago I had a lot of dental work done in that area, including removal of an impacted wisdom tooth and then root canal/extraction/implant on another tooth in the area. Since the pain started I have been to every type of dr and dentist imaginable...I was in/out of the Er repeatedly(they did nothing), been to numerous dentists, oral surgeons, periodontists, endodontists, neurologists, TMJ drs, pain management, etc. I was on meds for TMJ which did nothing, and then went to a trigeminal neuralgia specialist who put me on anti-seziure meds for 6 mths and when they didn't make a dent in the pain was told I don't have neuralgia. Yet over and over again I have been told by dentists and drs. that I do, when they can't figure out what else it is. I have had my molar tooth in that area removed after being told that might be the problem, only to get a dry socket and end up in more pain and the orginal pain got worse. Then I was told it may be my implant so I had that removed and no change. I've had cat scans, MRI's, and a cavitat. The MRI and cat scan showed nothing abnormal and neither did x-rays. However I went to a holisitic dentist who had me get an I-CAT and she thought she saw something which may be a lesion(nobody else saw anything on it). I was convinced I had NICO lesions but she said from my cavitat that I don't although it was all red on that side. Finally she told me she thinks I have osteomyelitis, she sounded quite certain of it actually but made it sound like it was no big deal and not as bas as NICO. She said my pain should get better now that I am pregnant but it has only gotten worse. In the meantime I started having trouble on my upper right side w/ my back tooth and had 2 root canals and then went to get it removed and the surgeon accidentally removed the tooth next to it which he claimed was not good either. So I had to go and get the original tooth removed as well, so in the past cpl of mths I have had 2 root canals and 2 extractions while pregnant and still have pain on that side as well though it's not the same as the chronic, constant pain on my left. Still I am terrified the same thing is happening to that side and if it wasn't for the baby I would have stopped eating long ago. I have also seeked numerous alternative treatments, including 3 accupuncturists,intuitive healers, 2 cranial sacral therapists, healing workshops, and an extremely expensive holisitc dr. my dentist recommended who said I had a chronic low grade infection but did not know what to do for my jaw. I have spent thousands and thousands of dollars that I don't have and for nothing. I am severely depressed and suicidal from the pain and have been kept on anti-depressants and sleeping pills while pregnant b/c I am in such a bad mental state my dr. fears I will harm myself and yet the drs keep acting like I am crazy and imagining or exaggerating the pain. I have tried a mouth guard and bite tabs b/c I was told something was wrong w. my bite, topical painkiller creams, taken every type of painkiller imaginable, mulitple novacaine injections, and my holisitic dentist put me on a regimen of herbal supplements and nothing has helped the pain. But now every dr. says there is nothing they can do b/c of my being pregnant...I do not want to do anything else that might harm my baby but I need to at least find a dr. who can help me w/ this and take it seriously so that I have a plan after the baby is born b/c I truly cannot live like this much longer. I am in shock finding this site and reading how serious this disease is, and if this is in fact what I have(and I believe it is after reading the stories) I do not understand why my dentist did not seem to be taking it more seriously. Every day I can see my face changing, my cheeks are getting more and more sunken in on my left side and the pain is getting worse. The surgeon I am seeing now says he wants to try injecting the area w/ steroids after the baby is born but other than that, no one seems to have any ideas for me. I am also very ambivalent about taking antibiotics b/c I was told by more then one dr. that they are the reason I have a weakened immune system in the first place, I was on them for yrs as a teenager daily for acne and then long term for my dental problems and then have been taking them about 4-5 xs a yr for chronic throat infections. I am pretty sure they are the reason why this happened to me in the first place...but I really just don't know what to do at this point and am open to ANY and all suggestions from ppl who seem to know what they are talking about and how devastating this pain is. I live in NY(Queens to be exact but very close to manhattan) so if anyone can recommend someone in the city that would be wonderful or even another state, I don't care I will go anywhere and do anything at this point if it might help. I want to be a good mother and I just don't know how I am going to be able to do that while in this much pain. Please help if you can and thank you so much for anyone who took the time to read all this.
~Gigi

 
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Old 01-08-2008, 12:48 AM   #2
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Re: Osteomyelitis of jaw and pregnant, please help

Hi Gigi,

Sounds like you have been through a lot and have seen a lot of dentists. First, have you seen an oral/maxillofacial surgeon? If you in fact have osteomyelitis, he/she should be the one to diagnose you and not a holistic dentist. Have you had a bone scan done?

Second, I am not a doctor or dentist, but if osteomyelitis is ruled out, it does sound like you have TMJ. I know you mentioned that you were taking medicine for TMJ, but did you try splint therapy? The splint is typically worn 24 hours a day. TMJ can be very difficult to treat and not just any dentist can help you. Were you seeing a reputable TMJ dentist? i.e. A dentist who works almost exclusively with TMJ patients?
Also, I wanted to mention that TMJ problems may change the shape of your face. I have also heard of TMJ patients having teeth removed only to have the pain remain in their jaw.

Have you tried posting on the TMJ board?

 
Old 01-08-2008, 09:44 AM   #3
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Re: Osteomyelitis of jaw and pregnant, please help

Hi there, thank you for your reply. No I don't believe I have been to see an oral-maxiofacial surgeon yet. I have seen many oral surgeons but I guess that is not the same thing? That will be my next step, finding a good one and getting the bone scan. The only problem is I don't think they will be able to do that now while I am pregnant. But if anyone knows of a good oral-maxiofacial surgeon in the nyc or ny area, please let me know! I'd like to at least find someone now, instead of having to search after the baby is born.

As for the TMJ...yes you are right actually I do have that as well. I wrote so much I didn't include everything but I was told by the TMJ specialist that I was seeing that I do in fact have it, but he was pretty certain that it was a seperate issue from the chronic pain I have in my jaw. Yes he was very reputable, at first I was just seeing a reg dr. at the TMJ clinic at Columbia Pres. but they actually called in the head of the clinic to see me and take over my case b/c it was so difficult. So that was who told me he didn't think the issue was TMJ, even though I do have it. I didn't try the splint therapy, basically b/c it was determined that was not my problem. Aside from the flexoral he gave me which didn't work, they also did a bunch of tests numbing me w/ novacaine and seeing how I would respond. I am hazy on the details as it was awhile ago and I've been through so many procedures since then but basically through that and my not responding to the meds he determined something else was going on. The holisitic dentist did make these bite tabs for me which I mentioned which I think acted like a splint, I was wearing them most of the day at first and through the night to see if that would help and it didn't change the pain. And no I haven't posted on the TMJ board. But as you said if I do find out it's not osteo I will have to look into what else it could be, although at this point I really don't feel it is TMJ b/c I have been down that road. I am sure having TMJ doesn't help matters but I don't feel deep down it is the cause of it. But anyway, thanks again for your reply I am going to get on looking for that surgeon, that sounds like a good next step.

 
Old 01-12-2008, 08:24 PM   #4
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Re: Osteomyelitis of jaw and pregnant, please help

Hi Gigi,

I just posted a reply to you on the dental problems board...I completely agree that you must see an oral and maxillofacial surgeon. Even better, try seeing one who is also a medical doctor...I used to live in Astoria, and I can tell you that Dr. Michael Turner at NYU Dental School might be a good person to start with. He is an oral surgeon/MD. However...I will be honest, and I'm sure you know already that your pregnancy does complicate matters. I say this because some of the tests they might normally use (i.e. bone scan, CT, etc.) cannot be done while you're pregnant.

Also, true osteomyelitis of the jaw is very hard to diagnose, and usually the only definitive way to diagnose it is through a biopsy. You said you had an iCAT scan done...that is good...definitely make sure you get copies of it on CD, and take it to any oral surgeon you see.

Another oral surgeon I can recommend is Dr. Thomas Dodson at Massachusetts General in Boston. I realize Dr. Turner is obviously closer to you, but just wanted to let you know about Dr. Dodson as well. He is an excellent oral surgeon who really helped me out!

Keep us posted...

 
Old 01-12-2008, 09:17 PM   #5
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Re: Osteomyelitis of jaw and pregnant, please help

Hi Maggie May...Thank you so much for your reply. That is very helpful, thank you! Even if the tests cannot be done while I am pregnant, I just really need to feel like I have some sort of direction and plan w/ this for after my baby is born. May I ask in your experience, I am assuming you were diagnosed w/ this(osteomyelitis) how you were able to find out for sure that was your diagnosis and how your experience w. treatment has been? Also by CT did you mean a cavitat? if so I have had that done also. I don't completely understand the results of it, my dentist confuses me...but basically that is what made her say she thinks it is osteomyelitis and not NICO which is what I originally thought. No one else sees anything abnormal on my ICAT except her either, but I do have a hard copy which I bring to all my drs. I felt very discouraged again last night b/c I saw the oral surgeon I have been working w/ who did my recent extractions and he basically is telling me there is no hope for me. he also said he thought it was NICO but after showing him my x-rays and cavitat, now he is saying he's not sure and wants to speak to my dentist. Although he said he saw nothing abnormal either on the ICat at least. he also said the same as you, that biopsy was the only way to really diagnose it and he kept saying even then it hardly ever shows up and when I asked him how I could treat it, he said it's basically impossible to treat. I also started having pain in another tooth now, on the other side and nothing is showing up on the x-ray so he says it's probably another fracture. I don't understand if it's really my teeth or if the infection or whatever i have is just spreading throughout my mouth, is that possible do you know? I can't bear to go through another extraction for nothing. he says the 2 I had recently should have healed but I am still in pain(not the same pain as the side I think is infected but still pain). I ended up in the Er again last night and am on painkillers again b/c I can't function . I don't know how I am going to get through the rest of my pregnancy like this. Please just tell me that there is hope and things that can be done, even if it's not till after the baby is born, I just need a light at the end of the tunnel so I can hold on to something...I can't live w. drs telling me there is nothing that will help me ever and I have to live like this forever. Anyway thanks again for the info, I am going to look into those drs. ~Gigi

 
Old 01-30-2008, 06:48 AM   #6
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Help I am in pain.

Sorry to chime in here but I needed to know if an ICAT is a good way to diagnose an infection in the jaw as I belive I have an infection. I had an apical after three years of symtoms (gland pain and cheek pain) and no tooth pain which then took the symtoms away for two years and now it is back. I am going in for an ICAT of the sinus and jaws soon but it seems the ICAT is not reliable....then what is?

 
Old 01-30-2008, 09:46 PM   #7
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Re: Osteomyelitis of jaw and pregnant, please help

Yes, make sure that what you're getting is a cone-beam CT scan...iCAT is one company that makes cone-beam CT scanners. I think it's the most popular one out there...Anyway, it's also important to have someone who knows how to read the scans properly. Some dentists/oral surgeons aren't good at that...so you may want to get your scan on CD, so that it's easy to carry with you for a 2nd opinion if necessary. This kind of scan is a good starting point for you...sometimes they will recommend other tests, but many defects and "suspicious activity" indicating infection can be seen on the cone-beam CT scans.

Good luck!!!

 
Old 01-31-2008, 07:23 AM   #8
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Re: Osteomyelitis of jaw and pregnant, please help

Thank you for your reply I appreciate it. I am getting the i-CAT™ Cone Beam 3-D Imaging System. Sine I am ordering this scan on my own how can I find someone who is good at reading this type of scan that deals with finding osteomyelitis in the jaw bone?

You mentioned that sometimes other tests are recommended.. is this due to the defects or suspicious activity?

thank you MaggieMay78 for your kindness

 
Old 01-31-2008, 07:25 AM   #9
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Re: Osteomyelitis of jaw and pregnant, please help

Gigi,

I just read your posts and your story is similar to mine although I am not pregnant. My pain in lower left jaw started in '05 too. I've been to dentists, endondontists & oral surgeons. Notice the pleural...Anyway, after my last cat scan of mandabile last week - it is confirmed that I have Osteomyelitis of jaw. I am going to Columbia Presb. next week to see Dr. Jerry Halpern. He is an oral surgeon. Very good credentials. He also worked at Sloan Kettering for 10 years and does so still part time. From everything I've read about this condition, you must scrape out and remove all infected bone and then have a 6 week or more course of IV antibioctics (at home via a pic line) followed by oral. In addition to the oral surgeon you will need to see an infectious disease doctor for the IV antibiotics treatment.

If you find a good doctor you will be on your way to curing this diseased bone if that is what you have. I live in PA and have been going to all these dentists and doctors here. I am surprised with you living in NY you haven't been able to find a good doctor by now. You say you went to Columbia which also scares me since that is where I am going to go. Columbia is an excellent "teaching" hospital with really good doctors. We should find the help we need there....

I can't imagine having this jaw pain and being pregnant - my heart goes out to you. I know what you mean when you say you can't take much more of this because I have been saying that this last year. Through my ordeal I pulled two teeth, ripped out a bridge, had numerous root canals, 2 cat scans and surgery on my jaw and here I am with this problem still. I am not giving up - I have faith in this doctor I will be seeing. Remember surgery AND IV antibiotic for Osteomyletis of jaw. Please let me know how you are doing.

Jeanine

 
Old 01-31-2008, 08:20 AM   #10
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Re: Osteomyelitis of jaw and pregnant, please help

Jeanine,

Where in PA do you live? I am in Pittsburgh. I also lived in NYC for 4 years and go back frequently b/c my husband grew up there. Anyway, it's not always easy to find the necessary help, even living in NYC...a lot of doctors/oral surgeons do not understand osteomyelitis of the jaw. It is a rare condition, so they aren't forced to learn much about it.

Anyway, I wish you the best of luck in getting this resolved!! I am glad that they finally found out what your problem is. If you don't mind my asking, what kind of CAT scan did you have that showed the infection? Was it a cone-beam scan, or a traditional one?

You are so right in telling Gigi about the antibiotics, if she does indeed have osteomyelitis. (I still think someone more qualified than the "holistic dentist" should be diagnosing Gigi, with the proper tests). If someone has osteo of the jaw, antibiotics are a necessity...I saw one of my friends go through this. She had an IV for 6 weeks, I think, or maybe longer...can't remember now.

Anyway, I think we'd all be really grateful if you let us know how you progress, and what kind of treatment you get. Thank you so much for posting, Jeanine!!

-Meg

 
Old 01-31-2008, 09:24 AM   #11
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Re: Osteomyelitis of jaw and pregnant, please help

MaggieMay78,

I live in the Pocono area for the last 9 years. I am originally from NY. In August I had a standard Cat Scan which showed findings of possible Osteo. I than had oral surgery and had a biopsy. The oral surgeon said when he went in there my jaw looked mostly healthy but he scraped out what he saw was dying tissue/bone. Then they have to wait to see what bacteria grows in the culture from the biopsy. They say the mouth has loads and loads of bacterial normally. Needless to say with the biopsy results my surgeon said he did not think I had Osteo so he did not reccomend me getting on IV antibiotics. He said if he had to go strictly by the scan he said it was an Osteo but when he was in there surgically he didn't think it was????? Obviosly I should have taken the IV antibiotics anyway because there WAS an abnormality on my jaw bone. Apparantly being on so much antibitotics these past 2 and a half years has only masked the infection. You should never be on oral anti biotics for that long - it's not good. You build an immunity to it and in my case it was not strong enough to get rid of the infection so it contunues to grow and in this case right into the jaw bone. I think it's amzaing that dentists and oral surgeons would rather think that every tooth in your mouth is dying one after the other (I mean in a row literally) than "hey maybe there is a bone infection here" Maybe taking a cat scan before instead of just prescribing anti biotic after anti biotic...I know from all of my research that Osteo of the jaw is rare but if you consider each persons symptons and the fact that you had all this dental work - they need to think it can be an Osteo before you pull every tooth in your mouth and spend tons of money. This can be a very serious illness if not treated properly. I have seen and read horror stories. From your jaw it can spread to your head. Not good. Hopefully this new doctor will be able to get rid of this - completely. I will keep you all posted.

Jeanine

 
Old 01-31-2008, 10:35 AM   #12
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Re: Osteomyelitis of jaw and pregnant, please help

I re-read everyone’s post and found the answers to my above questions & much more. I see that you guys are very much going through what I am right now. I am so sorry for that.

I see that you two mentioned to GIGI two other tests other than the i-CAT™ Cone Beam 3-D Imaging System that are helpful in spotting osteomyelitis in the jaw. I think one test was the bone scan and the other was the 5 mm CT scan with 3d Reconstruction. Do I understand this correctly that these three are different tests or are they all referring to the same test?

I feel so alone going through this ..thank you for you help

 
Old 01-31-2008, 12:28 PM   #13
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Re: Osteomyelitis of jaw and pregnant, please help

Stephanie1

Just to clarify, I had a regular Cat Scan and the doctor wrote on the script with 1MM cuts. The first one I had back in August was without contrast and the one I had last week they did first without the dye and then after they took all the pictures they shot the dye through the IV and took some more pictures. So it cant hurt to do it first without and then with the dye. The dye than collects is the spot where there is a problem.

You are not alone. I can't believe how many people are going through this same thing. If it weren't for these message boards you would never know. At least we could all share what we know and have been through which will help us all in the end. Good luck!

Jeanine

 
Old 01-31-2008, 01:48 PM   #14
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Re: Osteomyelitis of jaw and pregnant, please help

I am glad you are on your way to getting this mess cleaned up. I am sure you will keep us posted.

Thank you for your knowledge!

Last edited by Stphanie1; 01-31-2008 at 02:26 PM.

 
Old 02-01-2008, 11:41 AM   #15
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Re: Osteomyelitis of jaw and pregnant, please help

Stephanie and Jeanine,

I am just wondering, how do you think your osteomyelitis problems started? With a certain dental procedure, and if so, what was it? My problems started after impacted wisdom teeth removal.

Thanks,

Meg

 
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