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Trigeminal Neuralgia board


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