Neurosurgeon Consulation Next Week! Bonus info: No feeling in my tongue

I gave in. My neurologist urged/swayed/cajoled/coaxed me into going to see a neurosurgeon. This neurosurgeon is at Brigham and Women's Hospital in Boston. Originally they wanted me to see someone at Mass General Hospital, where they have a TN surgical team. But they got confused, and the Dr. they want me to see is really at BWH. I sort of want to go to MGH because of their TN surgical unit, but hopefully this guy at BWH is good. He only finished his residency in 2009 though, so I hope that is ok. I would prefer someone a little more experienced though.

I am nervous because I feel like once I go see a Doctor I am so easily influenced by what they have to say. What if they convince me to have some sort of procedure I don't want or need?? What if I do need it and I am too scared to get it? What if they tell me I am not eligible for it and I secretly want it? Oh dear. Maybe that's the issue, isn't it. I am hoping for some sort of magical cure, and I'm afraid I am not a candidate. But that is a dangerous wish, because I know that an MVD is risky, and it isn't a perfect fix. The other problem is I have bilateral TN. Right now I am only having problems on my left side. But I can't forget that I have had terrible problems on my right side in the past. What am I going to do, have TWO MVDs?? This is all so silly to project. I don't even know if I am a candidate for an MVD surgery. And then I go back to not even wanting one. But then I do. AHHHH. MADDENING!

In other news: I have no feeling in most of my tongue. None. I can't feel temperature. I can't even feel touch or pressure. On Dec. 10th (I remember because it was two days after my wedding and I was eating leftovers) I VERY badly burned the back of my throat. I couldn't understand why I wasn't more careful. Cut to yesterday, I burned my throat again. Again, I didn't understand how I could be so careless. Then this morning while I was eating my oatmeal I was about to swallow when some of the oatmeal hit my inner cheek. It was SCALDING hot. I couldn't understand. It had been on my tongue and I could hardly feel anything. I did a little experimenting with the oatmeal and sure enough I could feel it on the VERY tip of my tongue, but not the majority of my tongue. I tried touching my tongue with my spoon. Nothing. I have no feeling in my tongue. How does one lose feeling in their tongue and not notice. It is SO weird!

Thanks for listening my fellow TN friends. I hope you are having no TN pain today (maybe wishful thinking, but I do wish each of you the very best)!!!!

Take someone with you!

Please get as many consultations as you can. Once you get a procedure and there is damage there is no going back. I've heard that over and over again. And take someone with you! That's important too!