Osteomyelitis of jaw and pregnant, please help

[gigi88]

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

[kkl]

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?

[gigi88]

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.

[MaggieMay78]

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...

[gigi88]

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