So, I had “brain surgery” for TN pain I was having…I had a vein wrapped around my nerve in my face. Had the surgery may 29,2012 I was doing awesome- no pain at all…as of a few weeks ago the pain is back. I had an MRI to check and make sure stuff was good from surgery and it was…so I went to my dentist for the pain, he didn’t really know what it was…only thing he could say was maybe I have tmj and tn…so my questions are- is it possible to have Tn pain with out damage to the tn nerve…anyone else in the same situation? What should I do? Is that possible? Anything will help please. I was fine earlier but have been in pain for a bit now…I just don’t know what to do anymore. Naproxen and Tylenol don’t really work longer than an hour for me…the regular doctors seem to have no clue what I’m talking about and think I’m crazy.
Hi Jess,
I'm SO SORRY your pain came back! Please tell me the drs had you go off your meds after surgery??? If so, GET BACK ON THEM....gradually, like you did in the beginning. Even though you had the surgery....that nerve is still very "angry". It can take quite a long time for all the swelling, etc., to go away. I'm 4 months out from my surgery and no bad pain, but I'm still taking Neurontin and Trileptal....not the huge amts I was on. I have numbness on the surgery side but if I forget to take my meds on time (which I rarely do).....I don't get pain, b/c of the numbness I think....but I can feel that nerve "twitching" and jumping. And a couple of times during thunder/lightening storms and had a couple of pretty good hits. I'm no dr, but I'm pretty sure most people who have been through the surgery will tell you NOT to come off your meds all the way. Hope this helps.
And don't forget, I don't live too far from you....don't know what kind of support system you have but I'm here if you ever need anything. We TN sufferers have to stick together! :)
So sorry to hear this! I had my second MVD surgery May 2012 also. I had been pain free and weaned off all meds for 2 weeks and the pain came back on left side! Last week my right side started in again(I had MVD in 2008 and pain free on right till now) I called my neurosurgeon and they told me there was something odd?? Many of the past MVD patients have been calling in with break through pain?? That is what the doctor told me so just wondering when your pain came back?
Thanks,
Lisa
I had MVD in October 2011 - in January - Pain came back - waaaay less but there. Now it's gone. It takes up to a year for the nerves to fully settle. I can't believe they didn't tell you that!
See if you can get some immediate relief with Rx of Lidocaine patch topical, or an oral rinse lidocaine - or both!
and remission can come and go -- and some have to have 2 MVD's which I would gladly do over the meds!
Keep Posting --
Thanks for the feed back guys. My nerve was never really damaged I dont think. Last night and today it’s so bad, I’m considering the er after work to get some tegrotl (sp) and some pain medicine. Nothing works for me like OTC. The Surgon said it was normal for it to come back but it’s bad and he didn’t give me anything. I was fine for a few months. I just don’t understand at all. It’s so bad right now. I took 4 ibeprofine and nothing so far. But we shall see. I honestly thought having the surgery would fix it.
Pain started a few weeks ago