Well, I guess it is time to let you all know what has been happening with me. As I write this I am in excrutiating pain in my left jaw. Although I had MVD on March 4, 2009, the pain has returned full force. I started feeling the pain about 2 1/2 weeks ago and it has steadily gotten worse . I have been on the same major doses of medications as before with no relief. Not only do I have the pain in my face but the incision site is still very painful and not healing well because my immune system is shot from all the medication. I have talked to the docs in Pittsburg, (I live in Oregon) and they say that although a rare occurance, another blood vessel has probably moved into the space that they just cleared with the teflon pillows. Of course, they said to come back for a for another surgery ASAP. The head of the NeuroSurg Dept called me himself. I thought that I would at least get a 2nd oppinion about what to do before going all that way again and undergoing such an invasive surgery. AGAIN! I called several surgeons in my area and none of them would even let me see them for a consult. I was told no one but the surgeon who did the surgery could touch me due to the liability issue. Not even a telephone call.
So needless to say I have decided to go ahead and have the surgery because at this point I really have nothing to lose. I can’t live like this and don’t want to try. I now truly understand why this disease is nicknamed the “suicide disease” because “Living with TN” is NOT living at all just suffering in a hell-like existence. I am tired, angry, depressed every emotion you can think of, I feel. I am sick of people telling me to stay positive because I don’t want to anymore. I cry all the time and most times don’t know why. I am tired of being told to “just get over it” blah blah blah. I am not talking about the kind people here on this site mind you, please know that I appreciate all of your kind and positive words. Mostly, I am tired of my close family and friends and people who I now don’t consider to be friends because of it telling me I should try to be more positive. What the hell for? When you feel my pain for just one day then talk to me about staying positive. I am also sick of the doctors saying that maybe the pain is “rebound” pain from the narcotics. Of all people I think I know the difference between real pain and rebound pain. I don’t enjoy any “High” from narcotics they just barely allow me a bit of miniscual relief. They do give me incredible acne and toxicity so, hey, thats a bonus, right? That’s it. My story in a nutshell.