Tamara update from the horse's mouth

Hi everyone,

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.

My heart goes out to you. I was in your shoes a few years ago, I had a repeat MVD, but I waited a year just to be sure. It didn’t get any better so I had the surgery again. I felt all the emotions you are going through, no one can understand someone elses pain unless they have been through it. My incision healed OK, but 7 years later it is still very painful. If you ever want to talk or ask any questions I am here. I had my surgery done in Pittsburgh also, may I ask what hospital you had yours done at?
Take care, Marlene

Tamara…words just don’t seem like enough and truly I can’t think of the words to express how sorry I am for how you must be feeling right now. Please know that I am here for your support and will be praying for you.
Sending hugs and healing prayers your way, Judy

Dear Tamara, i had same problem, It is simply awfull. You are in my prayers. Listen have you heard of CYBER KNIFE??
I had it six months ago in Italy. Now no more pain, no meds, nothing, just little numbness on the right side of my face, after five years of tegretol i am ok without meds. I would not let me open my head for a second time. Inform about this procedure Get in touch with Standford University Hospital. My neurosurgeon has been formed there. It works really please do not loose hops.

Dear Tamara,
I’m sorry you are still suffering so badly. I don’t think anyone understands this pain unless they have suffered it themselves. I’m thinking of you.
Jo X x

Dear Tamara,
I honestly can’t think of the right words to say - just know that I too, do understand, and wish that I could visit & see you in person just so you have one other person by you that appreciates what this monster does to us and how it makes us feel. I’m wishing with all my might that this next surgery rids you of the pain you are now feeling!
I have to confess my ignorance in one matter – in that I had no idea that TN meds damage the immune system. How do your Doctors help you to manage that.
My best thoughts, hopes and wishes go to you right now!
Take care,
Kerry xx

I’m sorry. I will keep praying for you.

Love and hugs,