Hey Everyone,

I had a failed MVD where he cut the nerve because he could not find any interaction between a nerve and a blood vessel. That increased the pain so drastically that the next month we did an RF (radiofrequency rhizodomy) which cause more pain but kind of a more controllable pain.

Over the years my pain mgmt MD and I have discussed if this is more AD than TN but his attitude was nerve pain is nerve pain and we need to treat it. In the end I ended up with a PNS system as well,,a life saver. The nerve can only interpret one sensation at a time so instead of pain I now have a mild tingling which is far more preferable.

It may be too difficult for you but there is a major hosp in Colorado that does these as well. The hard part is not the unit the hard part is getting the right programming done. However within the next few years these will be FDA approved and perhaps at that point it may become more of a viable option for you.

What I will say is that while low dose methadone is wonderful for nerve pain, I found that adding more narcotic made it drastically worse. Please be careful and really monitor if you are getting any relief from the oxicontin. (Please note I am not against using opiates in the treatment of TN) I found the worse my pain got the worse the added opiates made it. So it was like doubled.
It may be different for you,,just an FYI.

I agree with a previous post, get a good MD (at this point I would suggest a pain mgmt MD) and make sure they are listening to your concerns,, if not find another one. Your MD along with your meds is an important part of the the partnership of tools you need to keep going.

If you can hang on,,I think you may be looking at a PNS for your long term answer. Just know that there are many of us out there that have faced what you are facing and we get it,,,and we are always here for you.

Maybe BM knows the facility in Colorado and can pass that along to you,,it may be worth just going (I know it's hard to do, I live near St.louis and I have to go to Cleveland) to get an opinion about whether or not you'd be a candidate for it...something to think about..
Good Luck and keep coming back,,we'll do anything we can to help Beth