Hi Everyone!
I’m new to this group. I have had TN for about 8 years now. I had the Cyberknife procedure last August (2009). I was doing great. My meds were down to 600 mg a day from 3,000 a day before the procedure. I’m still on light meds and have no pain. But recently, my face has gone from a light whispery numbness to a full blown numbness where I can’t feel anything from my nose to past my eye and from my hairline down to my chin. That is almost the entire left side of my face and head, I’m biting the side of my mouth causing my face and lip to swell and I don’t even feel it. Has anyone experienced this? Is it permanent? It’s better than the pain but it’s absolutelu anoying. It’s starting to affect my speech and my left eye. How far does this go? Can it cause facial drooping? Eye lid drooping? Thanks so much for any feedback on this. I have an appointment with my surgeon to find out the medical ansers but wanted to ask you all!
Chip,
Sorry to hear that. I wasn’t aware that the numbness could set in that many months after having the procedure. Did you only have the procedure once?
Liz
Yes, once! I knew going in that numbness was a possibility but I thought that after about three to four months I was home free. Well, in my case I wasn’t.
Chip,
I had Gamma Knife in October of last year and Cyberknife this April. After going through a variety of symptoms, most post-surgical pain and burning, I had an SPG block last week. Since then, my entire left side of my face has been numb. The doc said it was probably numb before, but had been masked by pain. I suppose this is better than electrical shocks of pain, but it is quite bothersome.
What is your status now? Did the numbness go away? What meds were helpful, if any?
I am hoping to find someone who has experienced the same things I am going through and that this is not permanent.
Thanks for reading,
Christine
I HAD CYBERKNIFE IN MARCH 2011 AND HAVE SUFFERED MUCH PAIN AND IT IS GETTING WORSE AND OVER THE LAST YEAR HAVE NOTICED DROOPING TO LEFT SIDE OF FACE LOOKS LIKE I HAVE HAD A STROKE. WENT TO SEE CONSULTANT LAST WEEK AND HE SEEMS TO THINK I AM GOING TO HAVE TO PUT UP WITH THIS FOR THE REST OF MY LIFE. FINDING IT HARD TO EAT AND HAS PUT MY LIFE ON HOLD. I SOMETIMES HAVE TO STOP TALKING AS IT HURTS SO MUCH. ANY ADVISE WOULD BE WELCOME IS THERE ANY TREATMENT FOR THE DROOPINESS THAT I HAVE.BEST WISHES TO ALL SUFFERS.
ANNIE