After four years... After a nerve block that made things worse and a Gamma Knife that helped some, I feel better today than i have in four years. If my pain was a 10 before the surgery, it is a 1 today.I still have to take my meds, but still...
It's only day 2 but I wanted to let you all know that this new procedure called a facial nerve stimulator is out there. The first surgery is temporary with two leads that are placed in my cheek. One along my jawline, the other in the upper part of my cheek.
The wires come out behind my ear and connect to a device that runs a low electrical charge. It's connected to a device that also allows me to adjust the charge for the best comfort level.
If it continues to work a permanent surgery will be done with the whole system permanently implanted in my body.
My doctor at USC told me that I'm only the third person to have this done for TN.
I'll keep you all updated. But there is hope out there. Something new.
Michael, the Gamma Knife – speaking from my own experience here – was not terribly invasive or painful. They numbed by head, screwed a large round, steel thing into my skull, and shot the trigeminal nerve with radiation to settle it down (not numb it). It was day surgery. After a couple of days the surgery itself was over, but the benefits were well worth it. A turning point in my life after two years of 24/7 pain and nearly losing my mind.
Day 2 of the stimulator has brought me more relief that I thought possible. I can actually take my mind off the pain. My mind has had moments where it’s free to think of something else.
Just hope it stays this way.
Good luck to you, Mike. Don’t stop seeking care, asking questions, talking to dosctors, surfing the Internet, and pushing your health care providors to help you get better. That’s the key.
Julie,
Sounds good. Is it possible that the pain will continue to get better? Keep us posted on this. This could be a breakthrough treatment . Are you the 3d person at USC or the 3d person in the US to have this treatment?
Liz
That sounds great! I’m so glad that you are getting relief from the monster with this new treatment. Please do keep us updated on your progress! And congratulations on becoming pain free!
Julie,
So glad to hear things are going well,
I was just thinking about you and wondering how things were going post-surgery and if they are still going well today, i hope they are!!!
I am have a trigeminal neurectomy, they are cutting my trigeminal nerve because they are down to their last option with me, because my pain is so severe and I have not been responsive to any other surgeries or medications. I don’t want to be over excited to think it is going to get rid of the pain because I have been let down so many times but I am just looking for a little relieve and maybe o be controlled with meds, hopefully!
I am excited to hear about your relief!!!
Since my last post I’ve had the Facial Nerve Stimulator permanently implanted and with my normal meds my pain is now gone.
My husband wrote this article telling our story. I’m sorry it’s political, but please look past that. I would be happy to help anyone get in touch with my doctors.