Hi Scoopy,

I just read your thread and it reminds me a little bit of me. I have been dealing with this pain for more than 2 years.
my pain started out in my tooth. thought I had a toothache and went to dentist. he could not find anything wrong, but said I could have cracked tooth syndrome. decided to have root canal and crown. Was back in his office after several weeks in severe pain and they told me everything looked great and it was just soreness and needed to give it time. I was in tears and told them this was not soreness. they gave me a couple of pain pills and sent me on my way. went back to dentist again after several more weeks and they said something. I was more insistent that something was wrong. they were not very nicety me and kept telling me that it was just sore. I kept telling them I new the difference between sore and pain. gin ally they said they could send me to an endodontist, but they didn't recommend it because it was expensive and they would not give me any pain pills. I realized at that moment that they thought I was a drug seeker. really hurt my feelings and I was very angry. told them I wasn't asking for pain meds and to just make me an a ppt with endodontist. endodontist was very nice and helpful.
I did end up with 4 root canals and 3 crowns . During the 4 th root canal, which was a tooth retreat I could not get any relief from nova cane he stopped procedure and said I think you have a nerve problem and wanted to send me to a pain specialist. I went home and decided after some research to see a neurologist.
neurologist immediately diagnosed me with TN. my pain ran across my upper teeth and sometimes up my nose into my eye area. she did an MRI and said it was atypical. I then started all the different anti seizure meds. the med would help some and then within few weeks pain would increase. Dose of med was increased and then another would be added. I went on like this, but side effects of meds made me a walking zombie and pain kept escalating.
my pain seemed rather constant, but I would have breaks although they were always very brief. the pain level also varied somewhat. I spoke with my neurologist about the possibility of having typical TN and asked if maybe a compression just didn't show up on my MRI. she said absolutely no way, I had atypical and would always have pain and be on meds. I choose to get another opinion and went to a neurosurgeon that specialized in TN. he took one look at me and said he did not know how I could even stand up they had me on so many anti seizure meds and doses were so high and I was still in co stant pain. I told him I wanted another MRI and I wanted and MVD. he said no MVD unless he found a compression.
he was several hours from me and I made an a ppt to have an MRI the next week and had MBD scheduled immediately following, that same day if he found anything. he found the compression and I was wisked away to surgery. woke up pain free. it was amazing, but I did have problems.
Woke up with intense pain in back of head. it was like TN had moved to back of my head. he kept telling me it was just from the surgery and it would calm down within couple of months. went back to his office several times within 5 weeks complaining of back of head and he kept assuring me pain would stop and then within 6 weeks my TNin teeth came back suddenly full force. Went back to him and he redid MRI and said everything appeared fine and suggested gamma knife. I declined. went to duke to see a neurosurgeon there. He listened to my story and said if it was his head, he would go to Pittsburgh to see Dr Janetta and have him open me back up and see what was going on. he said the only way I would know was to have a look. he didn't want to do it. he said I should go to the best.
A week later I was in Pittsburgh and saw Janetta and Dr Sekula. They were wonderful. they agreed to do a second MVD together thenext day. it had been 3 months since my first MVD at this point. second MVD was harder to recover from, but they added more padding and my TN was once again gone.
they said my pain in back of my head was probably from my occipital nerve. they said my original incision was not in the normal place and was a little high on my head and very close to my occipital nerve area. they thought maybe my nerve was caught up in scar tissue.
3 weeks later I had them do a third surgery to explore the occipital nerve. they found my occipital nerve was shredded and in shambles and they could do nothing to fix it. they think it was caught in retractor during my first MVD because of the incision placement. I went home devastated and still in pain. started looking into a stim implant for my occipital nerve. in the meantime, I started having a tooth pain. this time I really felt it was one particular tooth that had had 2 root canals and a crown because when I flossed it smelled bad besides the pain. went to endodontist in mid may and he took dray and said my crown did not fit properly and had caused an abcess. had another root canal, finally went to a new dentist and paid for a new crown. now my TN pain will not go away again. my neurosurgeon feels that the trigeminal nerve is just irritated and will calm down this time on it's own. I also just had a stim implant last weeks on my occipital nerve. it has reduced my pain by about 75%. I am still on pain meds, but am already reducing them. they also said that if my trigeminal nerve does not calm down I can have a lead placed on it to help.
Sorry, very long story, but wanted to say it is always best to get a second a third opinion. Don't just assume by one Dr that it is atypical or AO. sometimes it can be typical. my pain was so bad it felt constant, when in reality it was just firing so much and for so long it seemed constant. I did have breaks. also compressions do not always show up on MRI even when it is the right kind of MRI. it must be a special thin slice and still may not show up. my advice would be to go to the best Dr. I would go to Pittsburgh and be evaluated, even if it is hard to come up with the funds. at least you would know what you are really dealing with. if I had gone to Pittsburgh in the first place, I would not be where I am today.
hope this helps you in someway.
Easygoing