thanks for the reply sadie, nice to see hear from others my age

my biggest fear in my case is I'm finding many physicians don't bother with MVD for atypical cases. My doc's just seem to have no clue what else to do except operate due to how much pain I'm in. I have only experienced the sudden electric stabbing shocks of typical trigeminal about 20 times throughout the last 3 years, which I am very grateful for. My horrible burning pain however has slowly spread throughout my face and started sticking around for weeks on end, then became a daily pain that slowly got worse throughout the day until by the end of the night I wanted to kill myself. And now for about the last 9 months that pain is unrelenting, constant, and consumes my life. I've also developed a pressure in my sinus cavities, under my eye and deep in my ear that is unbearable...I feel like I have a sinus infection every day, like a massive head cold along with a migraine. The majority of my pain is on my back gums, back of the tongue into the throat region, and deep into my ear...which drives me crazy. My hearing is off, my taste many times is off- side of my tongue feels like sandpaper constantly. Foods are a major cause of flaring up my pain- coffee almost makes me cry. For some very odd reason however I can find minor relief from my pain while eating...my docs don't understand that one...I dont know if its the process of chewing or what but my pain subsides for only moments while I eat...unless i'm eating jalapenos then it explodes with pain..hehe

anyway I'd love to hear opinions from anyone....do I truly sound like a candidate for MVD? many of my findings online say otherwise...with my surgery a month away that kinda freaks me out. I also don't like that my symptoms also fit the description for other facial pain..like anesthesia dolorosa...which I never heard of until this site...obviously I haven't had any surgeries yet that would have given me AD, but the description of pain is spot on besides the extreme facial numbness, I only have minor numbness. I've never had any facial trauma that I recall... could AD occur from a simple cavity being filled at the dentist?

sorry for goin on a little rant..this site is great...first few times I've communicated with others with facial pain...any feedback is welcome

Honestly, from my research doctors dont do the surgery for Atypical TN. BUT if one is going to do it, go for it!!! If your in that much pain you need to do whats best for you. If you are already not in school/job now is the best time. I can relate 100% to that point where your ready for life to be over, but honestly surgery saved my life. yes i do have typical but also have atypical symptoms. The surgery made both of those less painful. It was the best decision i ever made.

I wish you the best and hope that the surgery shows something on the nerve so that they see whats going on and can fix it for you. Its so funny how you talk about coffee because I am the same way and i LOOOOVE coffee so its horrible first thing in the morning when i make my kcup and i cant drink it for an hour!

I was in my last semester of college during my worst pain and i still to this day dont know how i made it through. I think it was the thought that this is the end your almost done.. but i must add that i was going to the ER every week for pain shots because it would get unreal. I think you made a good decision by worrying about your health because thats what you need to do. No one deserves to live like this and college isnt going anywhere. To lighten the mood a bit, the economy sucks, jobs opportunities suck!

Please feel free to message me anytime with any questions, concerns, or just need to talk about this. It is tough because you are at this crazy stage of college in your life but YOU WILL MAKE IT THROUGH THIS!!!

keep in touch!

If you take the time to watch Dr. Casey, he addresses the current thinking regarding MVD's for atypical pain. You might get some pertinent insight into what you are asking about although not from a patients perspective, but still key to your issues.

Could you summarize what the thinking is about MVD for atypical pain for those who don't want to watch a two-hour video?

When it was originally posted, I probably could summarize it but that was quite some time ago. The thinking has shifted regarding the benefits of an MVD on atypical pain and the timing seems to be more important (as in the earlier the MVD from the onset of pain, the better). I'm pulling this from a very medicated memory so take it with a grain of salt. Hence, I still urge anyone considering an MVD to watch it. Dr. Casey is a practicing neurosurgeon in Michigan and while the video is long, its very watchable for patients.

thanks for the tip, where can i find this video?

The link is in post #3 of this thread, above.

haha wow, sorry didn't see that... i even looked for it the first time you mentioned it... guess my meds makin me loopy

Just a few quick notes....

OK, get a second opinion. It's your health in question,, where are you located,,perhaps someone knows an MD in your area.. I had an MVD and no it did not work but that does not mean I don't believe in it, I do. It has helped many people.

Have they done a MRI and an MVA??? (MVA is the vascular system and will usually show if there is a problem or inconsistency with the blood vessels) both are mandatory (I think) for being able to diagnose if an MVD is appropriate.

As surgeries go I think the MVD is not all that bad. I spent one night in Neuro ICU (again mandatory) and was up walking the next day...my back surgeries were much worse. Hell my gallbladder surgery was much worse.

OK some basics...get rid of all aspartame, caffeine, MSG and avoid sugars,,,all will increase TN pain.... get lots of sleep (get ambien from your MD if possible) the more sleep the better....avoid stress ( at least TRY to!!) learn to meditate,,it helps with stress,,even if all you do is learn some basic breathing techniques,,,it really does work!!! Do not use any tooth whitening products,,they sensitize the nerves and make TN worse. Of course drink lots of water and try and eat as healthy as possible,, avoid processed foods.
Also,,remember to take a good B complex vitamin and a multivitamin with selenium,,, Vitamin D with magnesium and calcium are also advised because of side effects from the anti-convulsants...

I encourage people to always go back to the basics because it seems that as the disorder progresses we all have a tendency to forget the basics and no matter at what stage we are we all benefit from remembering to do the basics because they work....

As for the surgery,,,my concern is that your MD's may just be grabbing at this procedure because nothing else seems to be helping control your TN. That's why seeking a second opinion is SO important. Your insurance company has to give you one so do it....this is your long term health and you want to make sure that you feel confidant that you and your MD's are making the right decision... even if you postpone the procedure to do it...there is some question about an MVD for atypical TN and if it might make it worse...I would really encourage you to get a second opinion...

The only other procedure that MIGHT be available is a PNS...it is still experimental and only done at a few certain hospitals...you can check here on the forum and read about the PNS systems ( yes I have one and no not everyone is a candidate for the procedure) because most likely your MD will not be able to give you answers on this... It is not normally done on TN patients so most Neuros don't know anything about how well these work or if you would be a good candidate..... you'll get more info here on the forum....

If you have any other questions you can always private message me and I will help with anything I can....good luck..I hope it all works out for you....Beth

Thanks, that's what I wanted. And it was helpful. I did read something recently about the sooner the better with the MVD, which surprised me because I was encouraged (or at least not cautioned against) trying other things first when medication wasn't enough. I was wondering why I wasn't encouraged to go right to the MVD, so it is helpful to see that as a change in thinking rather than bad advice.