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Originally Posted by abecrombie
Katie **
New to the sight. Not quite sure if I am even in the right place yet. I have had 2 Microvascular Decompressions in the last 3 years.I have been in excruciating pain for about 8 1/2years now due to a root canal. I have been up and down the east coast to drs, dentists, nuerologist, oral surgeons, brain surgeons and I can not even count anymore the list of medications I have taken. Neither surgery worked. The only thing that temporarily takes the pain away is chewing so I have gum in my mouth 24/7. I sleep with it! That is what the Dr's find so confusing is that chewing makes my mouth feel better. Xanax also works for short periods but I am on in my own opinion way to much. Makes me so sleepy. I have been taking 6-8 mg a day for the last 6 years. The Dr says the next step is the DBS but I am a little skeptical. Would love to here some stories that had happy endings. My pain is in my mouth. Lower left jaw on the inner part burning and pulsating...Can anyone out there relate? Thanks in advance for any feedback. Anyone from NJ??? Katie
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Hey Katie I totally relate. As I mentioned in the first post of the thread "atypical TN...MVD on way" I've seen a dozen or so "medical professionals". My doctors also have no idea why chewing or eating temporarily takes away my pain, in fact they seem to ignore that fact. Almost every night I sit and constantly eat something very bland like animal crackers haha, sounds funny but flavored snacks like chips make my pain increase ALOT. I should try chewing gum more, I used to do this but for some reason it seems like the food helps more. My constant burning, pulling feeling is located all on the left side of my face, in both my upper and lower jaw- the burning switches between jaws many times throughout the day/ very weird they usually do not both burn simultaneously, left side of tongue burns and feels like sandpaper, the burning seems to follow my tongue into my throat. My left ear is extremely messed up, sound is a bit muffled, every time I move my jaw it clicks and pops (they tell me no TMJ problems), my eardrum seems to be affected as loud sounds and pressure changes cause the pain to increase. Besides the burning and pulsating I have extreme pressure built up under my left eye and sinus cavities. At times I also feel as if something is moving under my skin near my eye, almost twitching with every heartbeat.
I just had my pre-op tests and my white blood cell count is double what it should be, I have to go back tomorrow to check for infections in the body, maybe i have a sinus infection? So my MVD, scheduled for next Friday will probably be postponed....I'm assuming Katie would not recommend an MVD for our similar pain? My pain started as a strange numbness in my tongue and I cannot remember at this point if i had just had a cavity filled.
Have you tried Lyrica yet Katie? It is the only med that has dulled my burning, but nearly not enough to live like this forever. The drug took awhile to take effect, by 150mg twice daily it started to mildly help, still way better than taking nothing. Is DBS- deep brain stimulation? Ya I'd be real skeptical about that as well, sounds real freaky too me.
Feedback from anyone is welcome, still feeling pretty scared about surgery.