Here's the deal with MVD and successes. I have done a ton of research, talked to a bunch of people who had it at varios support groups, and spoke to many other doctors (non-neuro surgeons). And here is what we have concluded.
There is no research done post MVD. Sure it has a 90% success rate, but each surgeon defines success differently. For example, even though my life was and is still turned upside down and I almost died, my TN went away a little bit. So...that is a success in my surgeon's eyes and will be in his paperwork.
I had major chest surgery in '99. The hospital did a follow-up at 3, 6, 9, 12 months all the way up to 6 years later till I went into remission. That is what you call follow-up research.
No one calls and asked someone with an MVD how they are doing post op. That is why the success rate is so high. If someone somewhere did follow ups with most MVD people, they would find the success rate to be much lower. And they don't want to do that...if the success rate is lower, less people would go for this costly surgery. That is my opinion along with many others.
And this doesn't include all the complications I had, or strokes, deaths, etc...I'm just talking people who have no relief or the TN comes back.
The funny thing is....I would have had the MVD if I had a 50% chance of relief. TN sucks and most people would still risk the surgery with a 50/50 chance.
They need to do more surveys, research, etc. This disease is not well known enough to warrent the effort though...it seems.
Sorry, but this is something I have been looking into all summer and it really bothers me....a little research goes a lot way. But I was told 97% success from many surgeons, and frankly, I'm not buying it.
OK, I'll get off my soap box now!