Hi All-
I was hoping to get some info about the trigeminal neuralgia center at John Hopkins. Is their main focus on surgery or also medicine?
Just a brief background - I have TN1. I have now had 2 MVD's, 1 in 2011 and another in 2015, with my pain returning about 3 weeks ago since the last one, around a year ago. I have been in and out of the ER while trying to get in to see my neurosurgeon, who I specifically told I am not interested in surgery, but trying to control this through medicine, but was told by the nurse that he still wanted to be the one to administer my medicine. From all the ER visits and past experience Dilantin is the only medicine that has ever made a difference for me. From calling the neurosurgeons nurse he kept bumping up my dosage until I now am at 100 mg/ 5X a day. My Dilantin level last week was at 18.1 and they said the highest it should be is 20. Needless to say upping this anymore isn't an option. I finally was able to get in to see him yesterday and the first words out of his mouth were I recommend doing a destructive procedure. I am 27 years old and just not ready to go down that path. After hysterically crying as he said there isn't much else to do he started me on a steroid because I had a cold a few weeks back and figures that's what caused the flare up. I don't disagree I just don't understand why after 3 weeks of me calling and being in unbearable pain this is the answer I am getting. *question, has anyone been given a steroid for TN? What were the results? did it help? how long?
So now I'm faced with what to do. He wants to see me back in a week, but to be honest I have lost all faith. I am searching around for a neurologist, but mine is retiring so may the search continue for someone who knows enough about TN.
I'm very interested that john Hopkins has an actual TNC, and would like to know more about it. Any information would be greatly appreciated!
Thanks!