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Possible Osteomyelitis or Trigeminal Neuralgia


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Old 01-24-2007, 09:11 AM   #1
suedickman
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Possible Osteomyelitis or Trigeminal Neuralgia

Hi there. I am new to this forum but I am pretty desperate at the moment. My husband has been struggling for the last year with jaw pain, ear infections and extreme fatigue with body aches and pains. He has been to numerous dentists, a periodontist, an endodontist, a MaxilloFacial surgeon who all said that his teeth and bone appeared normal in Xrays. He did end up having two root canals followed by extractions of his two back maxillary molars and the one tooth just popped out in one piece which it apparently should not have done. After that we were told it is no longer a dental problem so there were numerous visits to our Family Practice doctor, two Infectious Disease doctors and four ENT specialists. We transferred from our local doctors in Janesville Wisconsin to the University Hospital up in Madison and the last ENT surgeon we saw there thinks it is a viral infection in the Trigeminal nerve and has put my husband on Nortryptaline and Lorazepam and he has to go and see the Pain management clinic which could take three to four months. He also wants my husband to see the Rheumatology Department to rule out connective tissue disorders but as his blood work appears normal we are having some problems getting in to see them. He is really sick at the moment and I do not know what to do as we immigrated to the US from South Africa a year ago and if he loses his job we will have to return as I am not allowed to work with the visa I am on. We have a two year old daughter and moved here for a better life for her and I really do not want to return to South Africa but my husband is not coping with work at the moment. He is constantly dizzy and has pain in his jaw that he describes as being like someone cutting into the gums and a feeling of pressure like he is in a vice that extends into his neck and is also in his ear. He has a little lump that comes and goes on his gum and it is tender to pressure. He has no fever but at times says he feels flushed and very warm and sometimes he gets a red rash on his back, arm and neck which also disappears again. All of his blood work appears normal each time it is done, cultures taken from his gums don't reflect anything, his panoramic Xrays appear normal, his MRI's appear normal and the two CT scans he has had done only showed some inflammation around where the tooth was pulled in July of last year and also there is evidence that he has had previous ear infections but there does not seem to any damage or anything that would indicate osteomyelitis. We were told by the Maxillo that he saw that it was not osteomyelitis because there is no bony fragments and the Xrays appear normal. However, the pain he describes is not really like Trigeminal neuralgia as it is constant, it is not like a sharp electrical pain and it is not triggered by certain activities. My gut feeling is that he has an infection somewhere in the jaw that is just not showing up but I am not sure if that is possible. It also has moved from one side of the jaw to the other which I don't know if it is possible with osteomyelitis. He has started having anxiety attacks on top of everything but that could be a side effect of the Nortryptaline. He has been on numerous antibiotics (Clindamycin, Augmentin and Flagyl) with some relief but the problem either comes back or persists. Any advice on what the problem may be and other people's experiences of pain like this would be most appreciated. I really want to help him and get our lives back on track as at the moment it is like a nightmare.

Thanks for any help and suggestions.

Sue Dickman

Last edited by suedickman; 01-24-2007 at 09:21 AM. Reason: Ommitted some info

 
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Old 01-24-2007, 09:57 AM   #2
katzfriend
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

You mentioned that your husband has a "bubble", is this near a tooth that had a root canal or a deep filling? It could be an abscess. Sometimes they do not show up on x-rays and the can cause a multitude of problems. Is there an integrative/holistic dentist in your area? I have heard of many people that were told that their teeth were fine, when they had infected teeth in their mouth (which did not show up on x-ray). Best of luck to you!

 
Old 01-24-2007, 10:34 AM   #3
suedickman
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

Thank you for your suggestion. Any advice at this point is totally appreciated. I will have a look to see if there are any holistic dentists in our area

 
Old 01-24-2007, 11:48 AM   #4
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

Has he been checked for lyme disease? Also - some of his symptoms sounds much like tmj - you may want to check out the board for that forum - they also have a Great TMJ dr thread that you could check for one possibly in your area. Did most of the problems start after the teeth were extracted?

 
Old 01-26-2007, 06:26 PM   #5
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

He has been tested for Lyme disease but it was negative. The problem actually started with toothache which led a root canal and then an extraction and then the trouble started in the molar next to the first one which also led to a root canal and then an extraction. However, nothing was ever found radiographically to indicate that there was an infection although the last molar came out of the mouth with one tug and in one piece which indicated that it was probably dead. From then it became more of a jaw pain with ear infections and systemic symptoms as well as swellings that come and go in the gums and the lymph glands and sores in the mouth. The small bump that he has at the moment on his jaw that comes and goes is on the other side of the mouth from where the problem started. It is all very ***arre but the more I read the more I think that there is an infection that they are just not picking up. He has a Neurology appointment, another dental appointment and an ENT appointment next week and then he also has an appointment with a Rheumatologist towards the end of February. I just hope that someone has some ideas and that he can hold out until they do as he is really struggling to work and says he feels dizzy and weak the whole time. Thanks once again for your advice and good wishes.

 
Old 01-27-2007, 02:59 PM   #6
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

The first root canal did seem to help for about four to five months and then the problem resurfaced. The second root canal he was really sick the following day and collapsed at work and ended up at the ER and the tooth was extracted three days later and seemed to have been a dead tooth as it came out with one tug and in one piece which it should not have done. Most of my research has led me to think about cavitations in the jaw bone as it does seem to not show up radiographically and blood tests can also be normal. I also see that there is a lot of controversy surrounding a diagnosis of NICO. I am not a doctor and I just want him to get well so I was pretty discouraged to read about how difficult it can be to get a diagnosis. I am not happy with the latest theory about Trigeminal Neuralgia simply because his pain appears different to what TN sufferers experience and he has so many systemic symptoms. I think that we will have to persevere here and I have suggested to him that if he does not get some answers very soon he should try to return to South Africa to see if the doctors there cannot help him. My husband is a pharmacist so he has a good relationship with some of the doctors back there and they may be more amenable to trying to treat an infection or at least go looking for it. I still hold out hope though that we will come right in the US. Anyway thanks for your suggestion.

 
Old 01-27-2007, 09:24 PM   #7
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

Your husband's story is almost identical to my own story. Like your husband, my problems started a few years ago with a root canal, which then led to various extractions etc. With this my pain only became worse and more difficult to control. In England I seen so many doctors, dentists and other specialists who most were completely useless and at times rude. However, since moving to Costa RIca last year I have started to get some answers and treatments. Like your husband, my blood tests were normal, dental x-rays proved inconclusive, and the pain, tiredness, depression, and general weakness made working almost impossible.

I eventually seen some excellent specialists here who investigated things much further and, surprise surprise, they discovered an infection in my jaw bone. Following the surgery to correct this, the surgeon told me that the bone was so infected that it had turned black, so it was removed and a bone graft was carried out to replace the damage. I am still not out of the woods, and I still have problems but I am getting some excellent treatment from the doctors here and they are really willing to try to get to the bottom of this and to try to find ways that might help me to manage the problems that I have better.

I wish I could write more by I don't have time right now. However, my advice to you is for you and your husband to try to find a good "orofacial" specialist in your area... A well trained guy in this area will be able to have much more knowledge about this kind of things. I would advise you to stay away from general dentists and doctors as most of them know absolutely nothing unless the problem is very obvious, and now that I know what I've learned I feel quite a lot of bitterness to the way I was treated as my condition was often simply brushed as "in the mind" or "due to a low pain threshold" etc....

Please, do NOT accept this kind of treatment and stay away from any healthcare professionals who try to pass your husband's problems off as something of this nature. What your husband is feeling and experiencing is very real, and he needs to get some adequate treatment as quickly as possible just to get some quality of life back if nothing else.

I will try to write again some time over the next few days if I get a moment. Good luck with everything, and feel free to contact me via this board at any time if you would like me to elaborate on anything.

 
Old 01-28-2007, 03:30 PM   #8
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

Dear Dale2004

Thank you for your response. Your story only confirms what I in my heart believe - that my husband has an infection of the jaw that is going undetected. I have one quick question for you - How did the doctors in Costa Rica finally discover your infection? Were there any specific tests they did that were different to the ones you had done previously? Thank you for your advice about finding a good OroFacial Surgeon - we will definitely try to do that.

I really hope that your health continues to improve and that the doctors are able to help you resolve your remaining problems.

 
Old 01-28-2007, 04:25 PM   #9
dale2004
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

I consider myself to have been very lucky to have gotten a diagnosis. There is no specific test that can be on done to detect an infection in the bone, what you need is a very experienced surgeon to be able to make this diagnosis based on examination only.

In my situation I was having a lot of pain in the front of my face and teeth. My endodontist in Costa Rica decided to perform a second root canal in the front teeth to see if this would calm the pain down, however after eight shots of anesthesia and feeling completely numb, I could still feel a lot of pain in my teeth and face. My endo was concerned and it just happened that in one of the other theatres a very experienced oral surgeon was operating, so my endo asked him to take a look. When the surgeon arrived, he simply tapped the teeth and press on very specific areas around the jaw to see if there was any reaction - there was. He told me that he didn't think there was anything wrong with my teeth and he was almost certain that I had an infection in the jaw bone, however, the only way to know for certain would be to actually cut into the area and take a look. I was desperate and so decided to go with this, and he performed the examination an hour later. He was very surprised to find that things were far from normal and I had the surgery the same day.

The problem is that there is no easy way to detect this kind of infection and most people do continue to have some problems even after surgery. It is notoriously difficult to treat. I also wanted to say that while I am certain your husband doesn't suffer with classic trigeminal neuralgia, some nerves of the face could be involved and can cause constant pain. Just to make things even more confusing, some antibiotics can have an analgesic affect, and so just because the condition improves a little bit with antobiotics, it doesn't mean that it is definitely an infection.

I think your husband is in for a rough ride, but there is a solution out there for him. Personally, from your description, I think he has a jaw bone infection, and I please tell him that I know exactly how he must feel, the frustration can be just as disturbing as the physical symptoms.

I could ask my Orofacial Pain Specialist if he knows of anybody in your area (although my specialist is Costa Rican, he trained and worked in the US for many years). Unfortunately I don't think I'm allowed to name specific doctors on this forum and it doesn't appear that I can send you a private message - which is a great shame...

Please tell your husband that there is an answer out there for him. And not to give up, because as soon as he finds the right treatment, he can start on his road to recovery... Best of luck to you both!

 
Old 01-28-2007, 06:15 PM   #10
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

You can check with the forum administrator via e-mail but I think you can name a doctor and his city, state and country but no specific location, address or URLs (web sites).

 
Old 01-29-2007, 12:54 PM   #11
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

Thank you for your post. We saw a neurologist today who was very thorough and spent 45 minutes with my husband. She does not feel that it is Trigeminal Neuralgia and thinks that it is very possible that it is a jaw infection. Although we still haven't found the problem and a treatment I was so relieved to hear her say that and she was very compassionate. She has referred him to the Infectious Diseases Department at the University and has told me to watch out for signs of meningitis in the mean time and to take him to their ER if my husband does get very sick. She is also tapering him off some of the meds he was on for the Neuralgia. I really hope that we are on the right track - she is the first person to really acknowledge that there might be an infection and she was very concerned that he is struggling to function. So hopefully we are a step closer to him at least getting a bit better. Thanks once again for all of your ideas and help. I will keep you posted as to his progress.

 
Old 01-31-2007, 12:49 AM   #12
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

I have no idea what your husband's problem is, but I am sorry to hear he is suffering. I know you mentioned CT scans...but you should be aware there are newer types of CT tests, known as "cone beam" CT scans. If you do an Internet search for the "NewTom CT scan", you will find more information. These are VERY detailed tests used specifically in the dental community. I have a friend who had an infection of the jaw, and her dentist uses this type of scanner to monitor her progress, and make sure the infection hasn't returned.

I would highly recommend looking into this. I hope you can find answers soon!

Last edited by MaggieMay78; 01-31-2007 at 01:05 AM.

 
Old 03-23-2007, 10:17 PM   #13
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

Hi there
Hope you are still around on the posts have just come across your post regarding husband. His symptoms seem so similar to mine I have had for about 8months now been to numerous dentists, endontists, ENT's and oral surgeons all with not much help. I actually have swelling and pain in the jaw bone with teeth pain, extreme tiredness and a few other on and off symptoms, apparently no abscess in teeth all tests proved positive. I would be so interested to know how your husband is going as I have just been sent to yet another ENT which is 3weeks away but I like you believe that it is more like a jaw infection but cannot get anyone to really listen because x-ray was normal. I have just had a really bad flare up of symptoms with even the bone under my eye socket was swollen and very painful as well as jaw. Anybody with any advise it was be so much appreciated. I am just about going out of my mind here and I have a 5year old and 18month old that also rely on me to be strong and healthy.

Thanks so much in advance for any advise.

 
Old 04-03-2007, 12:47 PM   #14
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Re: Possible Osteomyelitis or Trigeminal Neuralgia

What is an "oralfacial "specialist? Are they MDs dantists?

 
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