I wanted to share with you guys an update on my post MVD results. I had my MVD done almost 2 months ago. (2 arteries wrapped around the 5th, 7th and 8th cranial nerves.) So far I’ve barely had shocks and when I did, I would say they were a 3 at worst. Yay!
Two days ago my the same side of my face started twitching again. Before surgery the twitching would happen right before or during the pain. I was worried this meant the pain was coming back. I’m happy to say that there was no pain! I don’t know why it would twitch w/o pain, but I’m happy there wasn’t any.
Just curious, anyone else get twitching? Haven’t read anyone mention it.
((Ihold)), wow! Incredible results for you so far! So encouraging! I don’t get any twitching that I can think of, I’m glad yours came without the pain. I hope your healing continues on the this path, thanks for sharing your good news.
Mimi
Hello ihold, i just had mvd a week ago and have had painless twitching ever since. I just felt today a little shock that i wouldn’t really call painful compared to the debilitating pain of previous. I hope it does not get any stronger and this was while i was eating only. No pain when speaking at all. I came off of all meds after surgery. ( neurontin and tegretol) against dr advice but I just can’t do the loopy feeling any longer.my only concern is my very irritated tongue and dry mouth. My taste sensation of barely there unless food is spicy then it burns, otherwise can barely taste anything. Just beginning to swallow solid food without panic. Still not taking anything for pain. Any suggestions?
Update: I saw my NS today for my 8 week post-op. He told me that some people get twitching with TN. He calls this twitching with no pain ‘phantom pain’. He says it might go away with time. As long as the pain doesn’t come back, I’m ok with the twitching still being there.
Taesha: Sorry I didn’t respond sooner. I hope you’re still feeling good. I had the twitch thing before surgery, so I wasn’t so concerned when it happened after. I did have an occassional shock or two after surgery (not as horrible as the ones before) but I haven’t had one in about 4-5 weeks! Yay! Is the taste issue still happening? A section of my cheek and tongue were numb for about 3 weeks post-op and things weren’t too appetizing. If you still can’t taste things, I would definitely talk to the surgeon. Also, you might have or have had some issues by stoping your meds cold turkey. The Drs usually give you a timeline on how to taper down on them so you don’t get a reaction. Ie.: I have to stop 200mg of Tegretol per week until I am done per NS’s orders. I really hope you are feeling as good as I am. I still can’t believe the pain is gone.
