One year to the day later

AND NO PAIN!!!! Just about now, 365 days ago I was lying in the Neuro ICU with this big, stupid dressing crushing my skull, whining to my husband about how much pain I was in and had I known an MVD would be so painful I never would have gone through with the surgery. And then I threw up. Then I threw up on the resident. Then I whined some more. I think I threw up a few more times. The first 18 hours or so after surgery were absolute misery with a capital M, but once I hit that mark at about 1:00 am the morning after my surgery it has been nothing but improvement, to the point where the only remnants I have of my surgery are a small numb spot on the side of my tongue and a bad ass scar behind my ear. (I tell everyone it's from a bar fight and they should see the rest of the biker gang that I took out single handedly)

For anyone out there debating going ahead with surgery, there is relief out there, there is light at the end of the tunnel, there is a possible end to your pain. I had some very dark times where I thought this was what my life was going to be, constant, torturous pain that no one could see and most people thought was just in my head. MVD was the right choice for me, I have never been so thankful for a miserably painful experience and a slow moving recovery in my life.

Today is my 5 month pain free MVD Anniversary. I celebrated with a visit to my neurosurgeon where we laughed about the ‘divot’ in my head and he told me that he fully expected to never see me again. Life is good!

Happy mvdersery! Lol ; )
So happy to read your update, one year later! Thx for sharing, I wish you continued well being, enjoy!

Happy 5 months to you MimiK! I wish you the same!

I’m 6 weeks post mvd and no pain, just low energy. I’m pleased and hopeful!
(( hugs )) Mimi

Yay! So happy for you! I plan on the MVD if mine ever gets to the point that meds don't control it. Glad for your nice story...........and I LOVE the bar-fight story!

Thanks everyone! I am so grateful to my surgeon, he truly gave me my life back. I even got the "unless you’re having pain there’s no need to come back"speech from him. While I love my doc and his staff I hope I never have to see them again! Mimik and Mimi I’m so glad to hear you’re both doing well and Donna I hope you can just manage your symptoms with meds and never need the surgery. While I’m so glad I went through with it, it was an absolute BEAST. Good luck to everyone out there!

i have been living a nitemare for a year, the doctor over prescribed me so i wound up in a hospital with a crash cart, then he had me on a dose of carbomazipine for a man twice my size, i couldn't walk got dizzy couldnt drive and the pain was maddening. He refused to do anything but give me more drugs, my primary thought i had vertigo, i finally found a neurolgist that said what i have is a bad case of trigeminal and need surgery as meds dont work for me.. now i am looking at a mvd and am scarred to death but it's either this or a gun because i can't live like this anymore it is not a life i am just scared

Hi sluggo! So sorry to hear about the trouble you’re having. I knwhen I was taking neurotin

Lets try this again… I know when I was taking neurontin and tegretol I felt like I was drunk all the time. In top of that, it didn’t help the pain in the least! Surgery is scary…it’s flipping BRAIN surgery but I know I got to the point where I was looking forward to it just so I wouldn’t feel the pain, even if it was just while I was under anesthesia. It’s a tough surgery and yes, you’ll be in pain afterwards, but from my experience it was THE best thing I could have done. Good luck and keep us posted!

Gosh I thought I was the only one who had horrible pain post-op. Not TN pain , but surgical pain. Like the worst headache I've had in my life!! All I've heard is "I woke up pain-free". Thanks for sharing for those going into surgery, to be prepared.

i will have my surgery soon, i can't even imigane having my life back i can't even remember what life use to be like. I feel like i have always been daily tortured and in agony at times, what it use to be like to eat a steak or corn cob, my life has been reduced to shakes soups, eggs and on a good day torn up chicken like some animal would eat. I can't bear to use the puree maching it just tastes different to me, like blah. I know there was a time i was happy but it's like a dream. now doctor to doctor dentist to dentist month after grueling month. more antidepressants, and the counselor telling me i must focus on the positive. the meds make it so i can't drive, somedays i lose my balance, but i can't go any lower on meds and the others don't work. I ask why me I've had so many bad things happen to me in my life why me why don't i just die it would be easier on everyone. Your post has given me some hope, all i hear is how mvd will ruin you, you will be deaf, in pain forever it wont work for long, I don't know thanks for giving me some hope

Hi KG,
The post op pain was murderous. My head felt like it weighed 100 pounds and that damn dressing was like a tourniquet. Sure, my tn pain was gone but CRIPES! I heard so many people say the same thing with waking up with no pain. Maybe they just had better drugs than me!

Hi sluggo,
I totally understand what you’re saying but you can’t give up. There is help and treatment out there, have you seen a neurosurgeon yet and if so do you have a surgical date yet? Not every MVD has 100% success rate but I know for me I had to try. And sure, I might have to have it redone at some point, I’ll cross that bridge when I come to it. EVERY surgery has risks, but you have to decide for yourself when the benefits outweigh the risks. All you can do right now is try to get through each day. Try not to do the “Is this what I have to look forward to for the rest if my life?” because honestly that will just bring you down. It helped me to try to look at what I was going through as a challenge as opposed to a sentence. Fine, you rotten nerve, you want to try to zap me every chance you get? Okay, I’ll push through that and that will drive me to research more options and treatments.
Keep me posted and good luck!

want to say that all i read was horror stories, yours was the first that gave me encouragement I am going in for the mvd tommorow. It has been reduced to either the surgery or a bottle of pills, I can't live like this anymore. This is total hell I feel like a horse with a broken leg they show them more mercy people who are around you they don't understand the hell the pain i am hoping i won[t lose my hearing that's scary but i am risking it and you helped me decide that it just may not be as bad as I've been told

Good luck tomorrow!!! Think of it this way, there are thousands of these procedures done every year, unfortunately you’re most likely to hear the horror stories instead of the folks that do great and move on with their lives. That’s why I felt it was so important to let folks who were going through this know that there ARE success stories. Don’t be surprised if you wake up and your hearing on that side seems muffled. That happened to me but it went away gradually over a few weeks. The first 24 hours are going to suck but with all you’ve gone through to get to this point what’s one more day?
Best of luck, everyone on here is pulling for you!!!