Ok, so I thought I would give an update about myself and what's going on lately. I am wondering if anyone else has experienced similar:
On 12/17, I had my MVD surgery. Everything went very well, and the surgeon removed a few blood vessels that were compressing the nerve. My recovery went well. It was much easier than I expected. Two weeks after the surgery, the pain came back, worse than before. I ended up in the ER. I met with the surgeon, who told me that one of the scenarios we discussed before the MVD is most likely true: my TN is caused by a rare genetic disorder I have, Acute Intermittent Porphyria (If you have never heard of it, google the name of the disorder, it's not fun). He suggested a balloon compression procedure to destroy the nerve. I had this done on 1/16. I wish I would have never done it! The pain was gone, but the numbness is awful. I have a weird sensation in my right cheek, a burning pins and needles feeling. He says its most likely AD. My ear is numb. I have double vision on the left side (he hopes that improves), and as of earlier this week, the TN pain still gets through! I am under the care of a hematologist for the AIP. She advised no more surgery until we get that under control. Has anyone dealt with TN secondary to something like this? IF so, what did you do? I am going nuts. To top that off, I have been having migraines all week. I am a Medical Physics/PreMed student. Luckily most classes this semester for me are online. Ugh, just want to feel normal. The AIP also causes GI symptoms and leaves me feeling cruddy and run down.