Hi guys,
So I’ve been doing a lot of research and it seems that MVD seems to be the best option for someone like me, late 20’s with failed medical management. I wanted your advice/comments/suggestions, any kind of input really about this. To those of you who already had it done, how was it, how long did it last, was it worthwhile, where did you have it done and by whom, and cost if possible etc etc
And to those contemplating it, I would also like to hear your thoughts for or against.
I’m really sorry we all have to go through this but together we stand, alone we fall…thanks for all the support! 
Hi, justkeepswimming. Sorry to have you in the crowd, but you are right: We are at least together in it.
Before you continue your research: Have you had confirmation that MVD is an option, medically speaking? In other words, did you have an MRI and have they mentioned blood vessels?
I don't want to put a crimp in it, but some people, like me, have other causes for their TN than vascular things. In which case, an MVD is not applicable.
I am staring at the wrong end of meds too, and am VERY glad that there are also other surgical options than MVD.
Crossing my fingers for you!
Hi Justkeepswimming, sorry you are not having success with medical management. I didn’t either, and after a couple of years of increasing pain, and tegretol affecting my liver I had an MVD. Not sure of the cost, mostly covered by my medical insurance, and probably not relevant to you anyway as I am in Australia. The MRI before surgery did not show evidence of any blood vessel pressing on the nerve, but my surgeon was so confident of finding one once he was inside that we went ahead anyway. He said in his experience only a small number actually show on the MRI, and that the MRI is more to rule out tumour or MS lesions.
He was right, found a bunch of blood vessels. 2 years pain free, no meds. I was back at work full time after about 6-8 weeks. Definitely worth it. Unfortunately the monster has returned, back on the tegretol, but the pain not nearly as bad as before MVD. Best of luck with a surgery if you go that way. Lots more info on this great place, I am starting on high dose B12 now as well, so many good reports for helping TN.
Thanks so much for the input guys!
@Tineline: I live in the Caribbean and options are very limited here, basically only medical management which has failed with me. I'm thinking about going to the US to pursue further consultation regarding surgical options however this cost will be fully on me as my insurance doesn't cover this, so it's not an option for me at this time. I've had an MRI done however it wasn't the specialised FIESTA type so no compression was seen, I guess this will have to be repeated if I ever make it to the US. So far though, the doctors in my country haven't been able to find a cause for the TN so we're basically trying everything. Unfortunately i'm having reactions to all the meds....i got Stevens Johnson Syndrome last month with Tegretol :'(
@Duckie: You know doctors say MVD should give you maybe 10 years relief but I feel like everywhere I'm reading people say it's more like 2-3 years....sigh Sorry to hear yours came back so quickly but if you had previous liver damage with Tegretol, maybe you might want to try the second line drugs: gabapentin, amitriptyline, lyrica? Best of luck to you and I wish you success. Hope it goes away for all of us permanently!
Hi Justkeepswimming, When the TN returned my GP wouldn’t put me back on tegretol but tried Endep instead. It sort of helped by changing the nature of the pain. My neurologist was ok putting me back on tegretol after he checked my old blood test reports as I was up to 1200mg/day before it started to be a problem. So I am back on tegretol 400mg/day and mostly ok now. Staying out of cold wind, and trying not to put myself in stressful situations helps:)
JustKeepSwimming said:
Thanks so much for the input guys!
@Tineline: I live in the Caribbean and options are very limited here, basically only medical management which has failed with me. I’m thinking about going to the US to pursue further consultation regarding surgical options however this cost will be fully on me as my insurance doesn’t cover this, so it’s not an option for me at this time. I’ve had an MRI done however it wasn’t the specialised FIESTA type so no compression was seen, I guess this will have to be repeated if I ever make it to the US. So far though, the doctors in my country haven’t been able to find a cause for the TN so we’re basically trying everything. Unfortunately i’m having reactions to all the meds…i got Stevens Johnson Syndrome last month with Tegretol
@Duckie: You know doctors say MVD should give you maybe 10 years relief but I feel like everywhere I’m reading people say it’s more like 2-3 years…sigh Sorry to hear yours came back so quickly but if you had previous liver damage with Tegretol, maybe you might want to try the second line drugs: gabapentin, amitriptyline, lyrica? Best of luck to you and I wish you success. Hope it goes away for all of us permanently!
@Duckie: Ok well glad to hear that and keep monitoring and avoiding your triggers…best wishes to you! ️