I have had TN on my right side since Dec. 2007. In the last 3 weeks I have not only been having symptoms on my left side, but crippling,debilitating attacks. Feeling like a burning skillet has been slammed into the side of my head or searing needles poked across my face.
I go in for a cyberknife consult hopefully next week(the appointment is for Thursday if my husband can drive me). I know numbness and even bells palsy like symptoms can come of it but how will it be if they do it on both sides. Will I look like I’m always frowning, unable to smile?
As a note I am not an MVD candidate, there is nothing pressing on the nerve(right side anyway, I go in Monday for scans to check the left side). The myelin is simply wearing away. I’m to have scans with and without contrast, I think my doc is checking to see if MS may be the cause. I don’t know what/why the myelin is just disintegrating.
Oh poor you hun, I too have Bilateral TN , but have had MVD right side and waiting to see if I am having the left side done. I have never heard of cyber knife what is that? xxx
From what I gather its like gammaknife. The blast the nerve bundle with radiation to basically kill it. It looks like it has a 50% chance of causing remission for 5yrs. Ive been told the bundle will regenerate and I’ll have to have it redone later on. I won’t know all this info from a direct source until Thursday.