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03-21-2013, 08:31 PM | #1 | ||
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03-22-2013, 12:57 PM | #2 | ||
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Thanks for the info and encouragement I will get a second opinion after I see the ENT doctor if he doesn't find any cause. I think it's very strange that the neurologist doesn't want to find a cause, but I do understand that it's pretty smart to wait until you find out that it won't go away on its own to do extensive tests or something. (I have no idea what tests they'd do besides an MRI.) There are a couple other neurologists close to me, so it shouldn't be hard to find one.
Dparis: I hope your daughter's surgery goes well! |
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04-04-2013, 10:33 AM | #3 | ||
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So, I went to the ENT last week and he was like "Lol, why'd your neurologist send you to me? It usually works the other way around." and he pretty much didn't know what to look for. But he said I probably have the start of TMJ or a mild case of it, but made sure to say that he wasn't second-guessing the neurologist's diagnosis and even said that I could have gotten it from holding my face weird from having pain.
He also that I should have nose surgery because my septum is deviated and I have really large turbinates It would be cool to be able to breathe through my nose, though! I got him to refer me to another neurologist who my aunt either used to transcribe for or it was the one she saw for migraines. Either way, she seems to think he's pretty great. I haven't gotten an appointment time yet, but it hasn't been even a week and I know doctors' offices are busy. |
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04-05-2013, 12:19 PM | #4 | ||
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Here's a description I found on a neurosurgery site: Quote:
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Jean |
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04-08-2013, 09:42 AM | #5 | ||
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The deviated septum couldn't cause pain, except I guess in my sinuses. The ENT did mention that. I'm afraid the pain is increasing again, because yesterday my jaw hurt a lot for several hours. But I'm fine today, so I'll give it some time. |
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04-17-2013, 12:37 PM | #6 | ||
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So I went to get a second opinion yesterday. Apparently this doctor also thinks it'll go away on its own. But not for good; it should come back at some point. And he said that only about 10% of people he sees with this problem have a cause, the rest just have it for seemingly no reason.
He looked at my MRI and said that if there was a tumor or blood vessel, he'd be able to see it slightly distorting the brain stem. And if he saw anything like that, he'd get me an MRA test. But he thought that it looked fine. So I guess I'll stick with the first neurologist. Even though I like the second one a bit better because he explained things better, he also said that he wasn't taking cases like mine as much and that the first doctor I saw was more of an expert. I'm pretty disappointed that there's nothing I can do to cure it. In any other case, it would be really weird to say, but now I'm thinking "Crap, a wish it was a tumor." |
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04-18-2013, 06:32 AM | #7 | ||
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Keep reading and educating yourself and if there is another doc with more experience, go to him or her. Yeah, it would be great if there was a cure and for some there is, but there is a lot they can do and new things get discovered. I have been pain free most of the 21 years I have had it, though sometimes I've had bad side effects from the meds and I doubt I will ever lose the fear of it coming back. One day at a time...
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10-13-2013, 10:11 AM | #8 | ||
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My case sounds a bit similar to yours...
I had my first TN attack 7 years ago, when I was 30. I was convinced it was dental and after four months of severe pain I was diagnosed with TN. I was put on Amitriptyline and stayed on it for two years until I wanted to get pregnant. I went off of it and the pain never came back... Until this year. Now I am trying Amitriptyline again and it seems to be working. I am still in the process of increasing it. TN is a progressive disease so it does not just go away. It does go into remission though. My mother has it as well and she has long periods of remission. It seems that when it does come back it gets worse, which is what I am experiencing now. There are also different types of TN. I was quite confused because my TN does not come in short bursts of excruciating electric-like shocks. Mine always come on slowly early in the day and by the end of the day my entire left side is killing me, like I got punched in the face. It starts in my bottom and top molars and radiates to my jaw, cheek and ear all on the left side. Once I discovered Atypical TN I was like that's me!!! So everyone is different and everyone's pain is different. And for me there wasn't a definitive diagnosis. First a dental cause was ruled out by several dentists. Next I went to a TMJ specialist who said I have TMD and was given a night guard. My MRI was completely fine. No amount of pain medication would touch it though. Amitriptyline has worked for me but it doesn't seem to be a common medication for TN and I do not think it works all of the time. These are some of the reasons this disease is difficult to pinpoint though. It just seems to be more of a process of elimination. Good luck to you |
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"Thanks for this!" says: | Vowel Lady (11-24-2013) |
02-09-2014, 09:06 PM | #9 | ||
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I think the diagnosis of TMJ is widely overused. It seems if a dentist or ENT can't find a physical cause for pain they use this term.
I was told I had TMJ before I was diagnosed with TN. Quote:
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"Thanks for this!" says: | Vowel Lady (02-14-2014) |
02-14-2014, 11:51 PM | #10 | |||
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J. Jane, I couldn't agree with you more. I went to an ENT, who told me my pain from outter space .... Meaning it was over the top, was probably TMJ. When I told him that two of the top neuros in town think it is ATN likely caused by dental work, he back tracked super fast. Plus, I don't think the meds I was /am on would help TMJ!
Oddly, later, I got some TMJ on the opposite side and I took Soma briefly and some PT. it was just clicking and mild to moderate pain. Did not last all that long and certainly cold breezes didn't bother it. But a cold breeze really bothers the ATN side! I personally believe a MRI and maybe an MRA are important. I think many with TN can have corrective surgery. And those of us with ATN through trial and error can find good meds to work with. My cream seems to work better and better over time. And I have something for breakthrough pain, so I don't feel as frightened. you might try. www.livingwithtn.org I got great info and ideas there! |
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