Just wanted to chime in and let everyone know that last Wednesday (sept. 3rd) I underwent MVD and I'M ALIVE and I WANT TO LIVE!! My doctor (Dr. Mericle - pronounced Miracle) held true to his name! After a 4 1/2 hour brain surgery, 12 horrid hours in the NICU (i say horrid, but all I know is that I puked a lot followed by a sledgehammer pounding me in the back of the head.) then another day or so just sleeping (guess they really juiced me up with the sleep stuff). By Sunday (5 days later) I was ready to go home! I am now pain free!! (since I woke up and was aware that I'd woken up!) I do have numbness in my face/head on the right side. But of course, I have a goose egg behind my ear! The swelling is going down I can tell, so my hearing loss/ear pain is lessening with each day as well. I have to say, as scary as a surgery that this was - I was at the point that even if I died, who cares, at least I didn't have pain anymore.
The Doc actually found that the vessel in my head that was touching and destroying the nerve covering was so long that it zig-zagged around in my head and was so close to the facial nerve (the movement one) so in a year or 5, would have been touching that too - so I'd have been having twitches along with the TN pain. Good Night Irene!
All in all, even though I sit here with a busting headache, bruises all up my arms from IV's, numbness in my face/head, a goose egg behind my ear, and I'm so dizzy I'm walking with a walker - I have to say I'd do it all over again! The headaches, numbness, bruises, goose egg, dizziness are all going to subside and I'll be left with nothing but my fun, happy, healthy life again!
Happy healing to you . . you'll be better in a few weeks but take it easy for now. I'm pain free after my MVD at almost 11 months now. It was the best decision I ever made and any amount of recovery was worth it. I also had a horrible first 24 hrs with terrible throwing up, etc. but it was just one day and better than any all out TN day. I will pray for you for a speedy recovery and for that awesome feeling when the recovery is done and you feel so good. Please keep checking in here. It's always great to bring hope to all here that suffer.
I'm so happy to hear the positivity from you, my MVD is next Tuesday morning and I am scared/looking forward to it. Anything is better than the monster we've had to live with in our heads. I will post when I am able...stay pain free
I was as well (scared/looking forward to it)! I've heard, and know, that everyone does differently - but if you trust your surgeon, rest easy that the nasty evil of TN will soon be a thing of the past! Praying you have instant relief and that your recovery is easy and complete!
houston man said:
I'm so happy to hear the positivity from you, my MVD is next Tuesday morning and I am scared/looking forward to it. Anything is better than the monster we've had to live with in our heads. I will post when I am able...stay pain free
Thanks for posting this ... I had a call from neurosurgery today to say they may be able to whip me in on Wednesday for an MVD (been waiting since April, ended up in the emergency room this week for IV morphine, that helped in my favour I think). I'm scared, I'm a nurse and that makes it worse, but reading your story gives me some hope that they will find something and I can have no pain and get off the meds that make me so sleepy.
So glad my story could help, even if just a little! Definitely go with the surgery, provided that you trust the surgical team and that the main surgeon is well versed in MVD. Still slowly recovering at home, and waiting on headaches/dizziness to go away, but I have faith that it will! The Anti-seizure drugs are awful no doubt! I'm now on only 600mg Gabapentin 3x daily (and I feel like when I follow up with my surgeon next Thursday he will stop that), 400mg Ibuphrofen and for the headaches I'm on fioricet 2 every 4 hours. So meds are diminishing!! There is hope Poisonivy! Just hang in there and keep your chin up!! Praying you find relief and comfort soon!!
poisonivy said:
Thanks for posting this ... I had a call from neurosurgery today to say they may be able to whip me in on Wednesday for an MVD (been waiting since April, ended up in the emergency room this week for IV morphine, that helped in my favour I think). I'm scared, I'm a nurse and that makes it worse, but reading your story gives me some hope that they will find something and I can have no pain and get off the meds that make me so sleepy.
Thank you for writing this. I have not even gone to the neurologist yet but have done enough study to believe this surgery is for me. I long for the day to want to actually live not just get through it.
I am so Happy for you. I had MVD surgery 4 years ago and it did fix my 2nd trigeminal nerve and it has been wonderful. However it has came back recently on my lower nerve. So it looks like another procedure for me. Your surgeon looks like he took care of that possibility and that is wonderful, wish mine had of. Do take it easy and the headaches will subside soon. Just remember KC is right, it does take a while to fully recover at least a year, as to your head feeling normal again. But just think about how wonderful it is to not have TN pain again. I was going out for lunch a week following my surgery, which might not have been a smart thing to do, but, the point is I felt like it!
Tica...Be proactive regarding your medical care. There is no reason to remain in pain. MVD is a rugged recovery, but me and many many others here are contemplating a 2nd MVD...even though we know what the recovery will be like...we still are going for it. Good luck to you. Congrats Kristikins...Love the stories of relief from this horrible disease!!!!!
Oh so happy to hear!!! Take it slow. Wish you continued pain free days. Mine was 16 days ago and I still have some issues. But, each day is a little bit better than the one before. This is my new motivational mantra. "Be the kind of woman that when your feet hit the floor each morning the devil says “Oh Crap she’s up” Yea, happy happy!!! : ). Oh to everyone or anyone else had sonagram done and blood vessel in my ankle has a superficial clot. Drs advice is to put warm compresses on it. Hurts when I put on shoes. Any suggestions?
