Not very good news to report. After finally seeing someone who knows a great deal about TN I've been told I should have never been a candidate for surgery. So in a way I'm told I'm lucky because I never had the MVD. The doc was baffled as to why the right side has become numb and thought of MS or fibromyalgia, although no signs of MS on last years MRI. Overall I’m more in the trigeminal neuropathy or atypical facial pain class and there isn’t much the doctors can do. An option is to seek treatment at a Pain Management Center. I’m sorry there isn’t much else to say, I was hoping on surgery to solve my problems so now I’m depressed. For those of you new to the site check out John Hopkins website and go to the Trigeminal Neuralgia Center page to get some information and view videos, including an hour long seminar by Dr. Lim on trigeminal neuralgia which at points touches the atypical pain as well. Dr. Lim does not recommend surgical procedures on most atypical patients that don’t have the symptoms of classic TN like the electric/stabbing episodic jolts.

So sorry to hear that you have been through do much with this,,,and being so young makes it even worse. I can understand the hard decision you are facing sine my daughter has CFS and because of misdiagnosis and trying to find someone who could treat her,, she too had to postpone her last year of college for about two years,,,

I can say very honestly that you are VERY lucky that you did not have the MVD. It would have only made it worse. I have Atypical TN and developed AD after having the MVD,,, you lucked out,,be grateful.

It may not be much help but don't give up hope,, it sounds SO easy when they give you the stats on the MVD and we ALL want a procedure or a pill that is going to make this horrible disorder go away,,,but it's just not that easy...

It may be a long shot but check out the thread on PNS,,,, I had mine implanted 6 months ago and it saved my life,, and I am completely serious about that.... perhaps since your pain is so difficult to treat you might be a candidate for it,,,, at least look into it.
Unluckily your regular MD or Neuro will not be able to advise you on this...this procedure is only (safely) being done at a few hospitals in the country....however you may be able to send your records to Cleveland and have them reviewed to see if you fit their profile..I would at least consider doing that,,,, and your insurance would cover the office visit because you are always allowed a second opinion...

Feel free to private message me if you would like and perhaps I can help a bit more,,I have been a support group leader for many years and might be able to help see if some lifestyle changes might help as well...I can also give you more info on the PNS since I have one....
the offer is there if you need me...Good Luck Beth

Hi Beth...
Can you please tell me what the PNS is that you had that saved your life? I have ATN and am at my wits ends with this friggen pain and my neuro telling me, "sorry, no surgery for ATN patients it can make it worse!"

Thanks,
Katie

So sorry,,I should be more specific with that.

PNS or Peripheral Neuro Stimulator is basically a neurostimulator that has be used to help chronic nerve pain in backs for years only it is being tried in an experimental capacity for TN.

If you google neuro stimulator you will get the basic idea of what it is and how it works,,or you can look at the thread here under TN that is listed as PNS,,, it probably has 35pages so I'd only read the last few there is plenty of info there to help you understand the procedure so I won't cover that here..

The bigger issue is are you a candidate (I have ATN and was lucky to respond well) and because it is still considered experimental for TN,, where to have it done. There are only a few places that have been doing it long enough to know what they are doing and where you can be confident of good results.
The other issue is programming...the Rep from the company that makes the unit is not qualified to program them for TN,, they haven't been trained to so even if you go to a great Surgeon and he does a great job if you don't have the proper programmer to back it up you've wasted the effort.

The other issue is insurance,,just because it's experimental doesn't mean that your company won't cover it especially if it comes from a clinic and an MD well known for doing these for TN and with good results..

I was lucky enough to go to the Cleveland Clinic and I'm biased but that's where I'd recommend,, yes because I had good results but more so because I have medicare because of my TN and other disabilities...and they are notorious for declining stuff like this and I had my approval back in two weeks...because it was from Cleveland and because of the MD...no question about it...

He said to me at my first visit ,,well we will be doing you in about 6 weeks and that's because of yhe holidays (I saw him the week before Thanksgiving) I thought he was crazy,,that there was no way it would be that fast,,my procedure was in mid-January and that's because I had to push it back because of travel arrangements......

I have no doubt that other insurance companies may be different but if MEDICARE approved it then most any insurance company will sooner or later...

There is a lot entailed with getting a PNS system and they are not perfect.the TN isn't gone it's another tool to help control thr pain but for many it can be a 60-80% reduction in pain....,,mine is somewhere about 70%...

If you want you can private message me as well and I can give you whatever help I can...I can also call you,,if possible,, and help explain or answer any questions..... FYI there is a hospital in Chicago but I don't care for the units they use I don't think they work as well for TN and a place in Colorado...there is probably someone who knows more about that one and recently a hospital in Tampa has begun doing them but I don't have much info on them yet...

Hope that helps....Beth