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

No problem, it happens to me all the time.

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.