Hello fellow TN sufferers and supporters. I have had ATN for ten years and in the last two years it has become bilateral and almost impossibel to live as a husband and father. I have had three neurologists, three/four pain management docs and have been on 10 - 12 different types of meds as well as over a dozen MRI's/CT scans with the most recent being in April 2011. The doctors are stumped due to the fact that the MRI's and CT scans do not show the usual nerve/artery/vein problem that is common for TN. The meds provide no relief (I have been on anywhere from 50mg - 150mg daily of hydrocodone while taking the standard issue carbatrol, clonazapam and other meds) Nothing even fades the pain. The doctors are hesitant as to which surgery to perform because I clearly present as an ATN sufferer, however, the tests do not show a clear cause. I have been in and out of hospitals, ER's, doctors offices and cannot get the pain to stop.
Some of the doctors have suggested procedures which are considered experimental by insurance companies which means no coverage for the procedure.
I have had several appointments with the Cleveland Clinic but have had to cancel because I do not have the financial menas to get there for treatment.
Does anyone know of a doctor or facility that offers pro-bono work for cases of ATN that are unresponsive to any meds? Some of the meds actially make the pain worse which leads the pain management doctors to consider something called a "parabolic effect" certain pain meds can create in people.
I would love to put my face through a plate glass window or have a bat right to the face. The pain is unbearable and I need help/feedback/guidance.