I attended a full day symposium at UCLA this past Saturday. I was impressed by the speakers, who were allowed 25 min per presentation. There were 2 other patients there besides me. The rest were drs and nurses, and well, I'm a speech pathologist, so my work is limited with the lip numbness and burning pain. So, I was there in two capacities, I supposed. At the end of the day, I did not learn much more than I'd been told previously, but did make connections with a neurosurgeon, Dr. Nancy McLaughlin and radiologist, N (can't remember first name) Salamon. They were gracious enough to speak with me and give me their email addresses. Unfortunately, I was unable to send them the cd of my earlier MRI. I am trying to get OHSU to send me the 3D digital MRI I had done there, but was told they cannot do that. UCLA vehemently disagreed with that, so I will call them again.
When I am in a kind of remission (my upper left lip is ALWAYS numb, and tingles and gets little electric shocks, I feel like a hypochondriac because I am not laid out unable to move. Then, when I have a flare-up, I can't wait to get "under the knife." I've been told my neurologists that I am a type A personality and a worrier. I get very angry at this as if I am the cause of this pain. I strongly believe that depression and anxiety are byproducts of chronic pain, and does not cause TN or pain. I've had headaches since I was two. TN pain, burning and numbness since 2007 along with tooth pain on the other side of my face (bilateral TN?) with no apparent cause. They want to extract the tooth. I don't.
Had a flare up which triggered migraine this morning. Will go into work as I have no choice (state education workers do not get soc security disability, our disability comes off of our retirement). Just had to write this rather rambling note to those who understand the frustration of this ailment, and side effects of pain meds. When I look in the mirror, I don't look different, but I expect to see a distorted face where my lip is continuously numb. Am I making ANY SENSE? Thanks for listening. I wish you all a pain free day...