I mean thinking about it if there cured more or less there probably making up lost time, and not on these forums
what do you think?
Yes!..in remission…vast majority who are in remission, or have most pain lessened, are not on here
But living their lives… I do both… I got remission because of this site…so I pay it forward.
Also, there is one on here with MVD like me, and he is in remission for 30 years… I am working on year 3 post op…
If you consider MVD, do it within first FIVE years for the highest …90%+ good outcomes! With only a top, seasoned MVD surgeon…I had to leave the state to get my best result.
I am also a success story. I'm only 3 months away from my MVD and pain free but I plan to "stay in touch" with this forum and pay it forward any way I can. I'm even thinking seriously about putting on a "Race to Save Face" 5K run here in Indy in October 2015 (right around the awareness day) to raise funds for the Facial Pain Research Foundation. I have become very passionate about this awful disease and how to cure people from it since I was diagnosed a year ago. It is a rare disease, which makes it tough to find a cure because the funding isn't there like it is for other diseases. Also, I remember how "alone" I felt when I was first diagnosed with this having never heard of it and not knowing anyone who had had it. This forum helped me so much. I ended up connecting and becoming friends with a gal here locally with TN through this network. I feel very blessed.
Hi! haven't been on here for quite some time and I think you are right on the money. When I was on last I said that I was going to stop taking all medications as the side effects were killing me and I hated them more than the pain . It seemed that no one supported this idea on the board nor was there support for alternative ideas IMHO. I went and stopped them anyways and I also started eating better. I always had a good diet but I upped my nutrition even more. I exercise everyday and am training for an Ironman triathlon. I have some scares where the pain tries to break through but so far so good. For me personally I feel that trying to be positive has made a difference and I found this board to be depressing. I am in no way negating the suffering that people are going through as know the pain all to well and I know there are many worse off but I do believe it is worse when you let it get the best of you.
So to answer your question yes, when things are better I believe you stop coming to the board but also in my case I found it to be less than positive and positive thoughts are what I needed.
I agree when cured you tend to try and forget about TN. I am the blessed one that KCDANCER is referring to having been TN pain free for 30 yrs.Back 38yrs ago when my TN started their was no such forums, I dont think there was computers, and nowhere to get advice, comfort or information about TN. Trying to get a diagnosis was near impossible also. So much has changed since then and having places like this to go to is such a gift. One of the many feelings that I had back when I woke up pain free was that I felt like I needed to stand on a Mountain top and scream to all the TN suffers that there was hope and there was a potential cure. This forum has become that mountain top for me. If there is just 1 person that my story can bring hope to then sharing it is all worthwhile. Never give up there is hope for all.
Thank you, Ed! I'm with you that there is hope for all. I try to share my success story (it's only been 3 months) as much as I can. You're and inspiration :)!!
Mybell...That is just so great. It is an unbelievable feeling to get your life back. Stay well and stay pain free.