Hello family, I just wanted to share a few things with you all. I had two brain surgeries done a little over a year ago and now the TN is back.It doesn't appear that the surgery was a success for me and I'm trying to keep my spirits up with this hard reality. When I think about ALL my family went through with the surgery it is very disappointing that they are now back to square one with me and this pain.
I have been living with TN for over 10 years and I have it on both sides of my face. I also have lupus and I'm convinced that this is the root of where my TN is coming from. I have a lot of evidence that I feel ( of course the doctors don't agree) is pointing to my nervous system is under attack from the lupus and TN is just one of the many secondary diseases showing up.
With that said, I was really excited to hear about these facial patches, because it will definitely be something I will inquire with my neurologist about. I have been off of all my TN medication for a year and now we have to start it all back up. Has anyone else had this experience with the surgery?
Thank you so much Kc Dancer Kc, you are the best. I go and see my neurologist in the morning and you really gave me a lot of hope, that the surgery still has a chance of being successful. I will be asking about the patch and no my state is still working on passing the marijuana bill. This would help me with both the lupus as well as the TN. Thanks again, I really appreciate it.
Hi, I haven't had an MVD but just wanted to say that i am sorry that your surgery wasn't successful. Hope the visit to the neuro provides some options to reduce your pain.
I am so sorry to hear that yours has come back. Hopefully Kc Dancer is correct. I had two MVD without success. After the first one, I woke up from surgery PAIN FREE!! It was unbelievable. A week after the surgery, I started having pain in my tongue and before long, it was all back. I had no relief after my second one. I still want to give you hope, Remember, we are all different. Be very careful about what choices you make from this point. I wish you all the best!!! Donna
Thank You for your words of encouragement Donna. I went to the neurologist today and he was disappointed as well. I'm currently on Lyrica for a l several other nerve disorders going on in my body. I have nerve disorders from my feet to my face, this is why I truly believe it is all the lupus. My neuro. said he's finally starting to believe it too. After all these years, I have been trying to tell him this for years, but I guess now he's a believer. He also gave me the prescription for the patches for my face. I told him about all you wonderful people on this site and how helpful this is for me, I really wanted to go deep into a depression about the TN coming back, but thank you KC Dancer, Donna and Trish because you ladies held me up when I was at my weakest point. Much love and appreciation.
