We are patients living with Trigeminal Neuralgia, here for your support.

My face doesn't even look like it used to!

Since ATN hit a few years ago it seems my jaw/smile is completely deformed. I used to be pretty - now I feel like I can't even smile without my teeth hitting and my jaw feeling out of whack. I feel it deformed my jaw, mouth and chin. Any of you notice this? It seems like everything shifted. Maybe it has something to do with the surgery? I try to ignore it as well as I can but sometimes it really gets to me and makes me sad. It's also uncomfortable (molars hitting when smiling). I hate it!

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Permalink Reply by Richard A. "Red" Lawhern on June 29, 2011 at 8:20am

Which surgery did you have, Jamie? And has your bite been evaluated by a dental surgeon?

Regards, Red

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Permalink Reply by jamie leigh on June 30, 2011 at 4:43pm

Hi Red,

I had MVD but no compression was found. I have since been to a TMJ specialist and have a bite splint.

Jamie

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Permalink Reply by Richard A. "Red" Lawhern on June 30, 2011 at 4:52pm

I have to wonder if the bite splint might even be contributing to your bite problems. Unless you had clear evidence in abrasion on the teeth, it can become very dicey trying to figure out whether you are dealing with facial spasms of neurological versus structural/TMJ origin.

For the limited amount this may be worth, I know of several patients who have had facial paralysis or numbness after MVD. But I can't recall having talked to anybody whose bite went out of whack for reasons at all related to having had an MVD.

If you still have TN pain, a lot of physicians would regard you as a natural candidate for RF Rhizotomy. Have you talked to anyone about that possibility?

Regards and best,

Red

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Permalink Reply by jamie leigh on June 30, 2011 at 7:52pm

I've never heard of RF Red. TMJ was ruled out before I was diagnosed with TN (which I found out on my own was ATN...my neurologist said there was no difference). An oral surgeon checked me also before the neurologist and said "myofascial something or other". I went to the TMJ specialist several months after my surgery because I was having so much tooth pain. I wear the splint at night and it has relieved the teeth sensitivity but my jaw is still misaligned. He filed my wisdom teeth down a bit and said the next step would be to possibly pull them. I'm too afraid to do that though because I'm afraid it will bring back the extreme pain.

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Permalink Reply by Richard A. "Red" Lawhern on June 30, 2011 at 9:12pm

Jamie, I suggest that you spend a bit of time with the "Help with Research" tab, at the top of this page, if you haven't already. Then let's talk again. Before you can decide on a future course of pain management, you first need to have a consistent and actionable diagnosis. From what I'm seeing in your comments, I don't think that you do yet. You may need to be seen by a regional medical center like Mayo or Johns Hopkins, if you live in the US, but in any event you need a second opinion by someone who treats large numbers of facial neuropathic pain patients.

Go in Peace and Power

Red