Another Newbie - Unfortunately
 

Hello Everybody,

I have been recently diagnosed with ATN-Bilateral, by my neurologist, but we're still waiting on the MRI's to verify the diagnosis/cause. Yep, I hit the rareness lottery. :eek:

My pain started on a Thursday (Nov 12, 2015), as what I thought was a tooth infection, due to my pre-existing periodontal disease. I called my dentist on Friday for an expedited appointment, but I couldn't make the one they had open, due to distance, so I scheduled for Monday morning. Friday was spent using Orajel to numb they area. Saturday, I had a spaghetti dinner fundraiser that I was working at, and as the night progressed, the pain had spread to more teeth and also to the other side of my gums, which I thought was weird.

By the time we finished cleaning up, and I was leaving, the pain was beyond the Orajel's abilities, and now the pain had spread to ALL of my teeth, ALL of my gums, my left temple, and my left eye socket. I wanted to rip my jaw off of my head. Since I couldn't control the pain, I went to the emergency room. This was treated as a possible migraine, but then I was prescribed Levaquin for a possible sinus infection, even though the x-ray showed the sinuses as only slightly cloudy. No pain meds - yea!!! Sunday was spent with more Orajel, and some leftover Vicodin from a previous incident.

Monday, I went to my dentist appointment and she said there was nothing wrong with my teeth or gums, so she couldn't do anything for me. I was in so much pain, I asked her if she could just numb my whole jaw/teeth, but she couldn't without a known problem. Ugghhh!!! When I left the dentist, I just drove to my doctor's office for an unscheduled visit, but I had to see a different doctor, since he was off. She prescribed Prednisone to help with the inflammation of the "sinus infection".

Monday night, I couldn't take it anymore, and wen back to the emergency room. Once again, they went with the migraine protocol. Knowing they wouldn't want to give me narcotic pain meds if I just asked, I told the ER doctor to please call my primary care doctor, and verify that I was not just a pill seeker, or abuser, but I really needed something strong for this pain. He gave me a Vicodin, called my doctor, and then wrote a Rx for Vicodin. He also talked about some nerve condition (TN) that could cause my pain, but I was in so much pain that I couldn't understand/remember what he said. Monday night and Tuesday were spent in a Vicodin fog trying to control the pain (futile attempt),

Wednesday, I was able to see my doctor, and he discussed Trigeminal Neuralgia with me, then gave me the referral for the neurologist. He also gave me a stronger Vicodin so that I could "ride it out" until my neurologist appointment. Not that it would control the nerve pain, but at least I wouldn't give a **** for a while. LOL! Wednesday afternoon, I begged enough that I got a neuro appointment for the next day.

Thursday afternoon (Nov 19th, 2015), my neurologist agreed that it was TN that was causing my pain, but she wanted two MRIs to see for sure what's going on in my head. She started me on Carbamazapine (200mg twice per day) and Gabapentin (300mg three per day).

My right jaw/teeth haven't hurt much since then, but the right side is still having episodes, some severe that you just have to ride out, because I don't know how to interrupt the nerve impulses. Some have scared the **** out of my wife.

I have an appointment with a neurosurgeon on Tuesday (12/1/15) to discuss options for MVD, once the MRIs are done. I'm only 50 years old, and I want this fixed ASAP, since I'm still VERY active in scuba diving, motorcycles, and kickboxing. The kickboxing may have to end, or maybe I just don't spar anymore - LOL.

I consider myself VERY LUCKY to have been diagnosed within only a few days. I've read many stories about those that go months/years without a proper diagnosis.

If you made it this far, then I thank you for taking the time to read my history. :cool:

Have the MRI results come back? I had that test and others. My understanding is in the great majority of cases, a nerve compression in the brain is what qualifies you for the MVD procedure. Without such a compression, it doesn't make a lot of sense to do the MVD procedure.

I suffered bad Trigeminal nerve/facial nerve pain (and damage) after a dental procedure. The MVD didn't show compression (s). Some people call this "Aytypical" Trigmenial Neuraglia, although this is not the technical name for it.

Very very general speaking, I seem to notice that people with the nerve compressions in their brains (where MVD helps) often have that quick horrible electrical type pain. Others, like myself, have a very bad, prolonged boring, deep , relentless pain.

My neuro told me MVD wouldn't work for me since I didn't have a compression as indicated by an MRI. So meds would be my best tx. I use a compounded cream that I rub on my face. You can prob. look at my old posts as I talked about it a lot.

For those who do have a nerve compression (brain) as indicated by an MRI, I understand the MVD procedure is often very helpful.

It's been three years now for me using meds alone. (Again, I wasn't a candidate for MVD as I had facial nerve damage) The first two years or so were rough. Went through many meds. Very recently, I feel I have more control of the situation. Not perfect, but my meds seem to work better or something. I've also learned to avoid triggers, etc.

Dentists seem to know little about facial nerve pain or go into denial. It's good that you are seeing a neurologist. Sometimes you have to get a second opinion as so me neurologists aren't all that familiar with TN or it's atypical variety.

Hang in there!