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kristin76 
8:19pm, November 26, 2008
the doctors at tufts craniofacial pain center told me i definitely do not have TN. they also do not think i have neuropathic pain in the classic sense.
they told me they think i have myofascial pain, compounded by my bite change which is traumatizing my teeth and causing them to be sensitive. they told me i do not need any root canals; that although i do have cavities in those teeth, they're small and would not be causing this kind of pain. (the other dentist wanted to fill and file my bite down!)
dr. scrivani is very smart and professional. he's also very friendly. if anyone reading this lives in boston, please go see this man for your face pain. we talked at length about my symptoms. i told him i was very afraid of being the .00001 % person who had this strange facial pain phenomenon. he's pretty familiar with trigeminal pain and he said for me to have the symptoms i am having, it's nearly impossible for it to be an abnormality of my nerves. he said two nerves malfunctioning at the same time is statistically very unlikely. my pain doesn't fit and he's seen alot of people with trigeminal neuropathic pain. (but i still think everyone is different!)
i have to get a new splint to reposition my lower jaw. i also have to go for physical therapy.
i am not sure how i feel about this Dx. my face and teeth pain is so widespread and chronic, i feel it will never go away. i kept asking the dr. "are you SURE i don't have neuropathic pain?" he said my nerves are being oversensitized from the pain signals, but the nerves themselves are fine. however, aside from an obvious lesion or stroke of some kind, he told me there is no way to detect an abnormal central nervous system function. medicine is just not sophisticated enough right now. he said how they diagnose is purely from the patient's pain history and how the patient presents in office.
i just don't know. he told me not to discontinue the pain meds because he said they work on your brain by lessening and changing pain signals. he said they work on pain in general, not just nerve pain.
i'm feeling scared and overwhelmed again. i still feel like i'm slipping through the cracks. i still feel like i AM this ultra rare case. i just can't believe this is "neuromuscular".
one interesting thing which happened was the director of the center came in to examine me and he sprayed this ice cold liquid on the right side of my neck. then he asked me to tap my forehead to see if i got those weird pins and needle sensations. so i tapped and strangely enough, although they were not entirely gone, they did diminish.
it just seems too simple.
it was $450 for the initial consultation and exam. the new splint will cost $950 and each subsequent office visit is $175.00. and they don't take my insurance. my parents, who told me, "just go, don't worry about the money" are going to shit egg rolls.
i've been up all night researching. i'm going to bed.
