Well, BMW summoned me on Facebook. Sorry for not being around much. Often people from these boards and the BrainTalk communities will contact me through email if they have any questions or comments about my MVD diary. I answer all my emails. My address is email@example.com
There is a huge support community on Facebook as well. Both sufferers and family members from all over the world, post support and ideas. When we are going through a rough patch, ultimately we are alone in our pain. Since there is no outward sign like bruising or blood we look perfectly fine. Only a fellow sufferer truly knows the desperation of this relentless affliction and although they can't help your pain, they can hold your cyber hand from anywhere in the world. I would be happy to be "friends" on Facebook with any TN sufferer and introduce you to the other members. Here is my link, just let me know you are from here. http://www.facebook.com/ellabc
It's a great place to go when you are hurting in the middle of night all alone. Because of time zone differences, you are never alone in cyberspace.
I'm sorry for your suffering. You did not mention where in Canada you reside. I know there is a group meeting in the Toronto area on the last Sunday of each month. Here is the email address of the person who sends out notices about those meetings. Jan@catna.ca
. If you are in the GTA, contact her for further info. I have never attended one of these meetings so I cannot comment on how they work or how big they are.
you can click on "support" in the nav bar on the left side and it will give you the links to all the support groups in the difference provinces.
As for me, my TN has been behaving. Since that weird blip in June, it has been quiet. Going through perimenopause, I find a definite correlation between my TN and hormone surges. Although I do not get shocks anymore, sometimes, before my [irregular] period, I can experience a sensitivity that feels like it is about to be a shock, but it does not come. Sometimes it comes in the form of a premonition. I know that sounds strange, but I actually get a premonition, just before one of these sensitivities. A subtle reminder that this monster is lurking in my head somewhere and keeping me in check, so I never get to forget or take it for granted.
Since my MVD in 2005, I have been able to get on with my life. I work full time, I am still writing my advice column and now have embarked on writing a novel.
I know most people posting in these threads have failed MVD's, because the ones who have successful ones, can't wait to put this chapter behind them and never enter anything which reminds them of their suffering. This is why I posted this thread in the first place, so others can see there is hope. The numbers don't lie. For Classic TN the success rates are in the high 90th percentile. As for ATN, I think each case has to be looked at individually to assess the success rate. But the fact still remains, in the hands of an experienced
surgeon, you may have a good chance of beating this thing. The surgery sounds far worse than it actually is. Recovery time is a lot shorter than going for plastic surgery which people do all the time these days.
I lost 13 years of my life being afraid of MVD surgery and living on high doses of Tegretol and pain. If I had only polished up my crystal ball, I would have not lost those years. Doctors always said, "If the meds work, stay on the meds", so I lived in a Tegretol fog for all those years.
Please feel free to contact me on Facebook or by email. I will do my best to answer any questions about the surgery or just talk and offer some friendly support.
PS Thanks Tina for reminding me to come back.