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Old 08-27-2013, 09:50 AM #18
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Vowel Lady Vowel Lady is offline
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Vowel Lady Vowel Lady is offline
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Vowel Lady's Avatar
 
Join Date: Aug 2006
Posts: 1,190
15 yr Member
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I'm so sorry you are suffering with this pain. Like I said earlier, I have TMJ on one side, and ATN, on the other.
ENTs do not know about this disorder.
Stick with a good neuro. Perhaps you should get an MRI with contrast relatively soon and an MRA as well. See if your neuro is willing to order these. If not, it might be a good idea to get another one.
My neuro ordered two MRIs with contrast and an MRA.
I understand if medication can't get it under control Microvascular Decompression Surgery, also known as MVD surgery, often works very well. Some people get TOTAL relief!!!!
I have also heard of people getting better over time and it changing to more like an atypical trigeminal neuralgia (which is what I have). I use various medications...one is a cream I put on my face. The Gabapentin is in the cream, so the side effects are a little less. It still does negatively influence my memory.
Check out the useful sites thread. I go to a TN group on line and have gotten some really helpful information talking with others with ATN.
Good luck.
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