Update: two and a half months after the MVD

Well guys, I know it’s been awhile but I’m just giving an update! I’m FINALLY back at work and back in the normal routine of things. It feels great to not be scared I’m going to have an episode again. Although I feel like sometimes I’m waiting for it to happen. Everything is going great, scar is healing up and it’s completely covered by my hair (Which I grew out really long just in case!) The little random pains are still there but they only last a minute or so and I can deal with it. My scar looks great and the only problem I’ve had with it is that it ITCHES something AWFUL. But apparently it does that when it’s healing. Hope everyone is doing well! Stay strong all :slight_smile:

Great news! Glad to hear you recovering well. I had my MVD surgery on Dec. 14th and not back at work yet because I am afraid to go back. I might end up having to have some mental health counseling jus to go back. It's been 3 months and I am afraid of something happening. I am out of sick and vacation leave but am receiving disability. If I go back and I have a problem then I want have any cushion. I have a lump in the back of my head that is squishy at times and hard at times. They say it's from a spinal fluid leak and it will eventually absorb in my body but they won't give me a timeframe on that happening. I hurt it two weeks ago and it put me down for a couple of days. They offered me a spinal tap but I didn't have it. They did a CT scan and never called so I am assuming it's fine.

Good to hear that you are doing well. It certainly gives me hope. Thanks for sharing.


I had my MVD done 5 weeks ago and I am going back to work next week. I am also having the little random pains. Are you still on medicine or has your doctor weaned you off?

Christy: That is great. I am waiting for my breakthrough. I don't know if your question about meds was directed towards Amy or myself so I'll answer for me. I am still on 1200 mg of gabapentin. I am happy that most of the MVDs seem to be successful. I am not having TN pain which is good but having some pains and then puddle of fluid. I really am happy for you and Amy. I am sure I'll be back to work soon too.

Take care!

Hey guys. I am finally (as of this week actually) off of everything. I feel like I just took jaws of life to my ball and chain that was my medicine. It’s such a relief. I just hope it works and doesn’t come back.

Stay positive Amy. It will be good and you’ll do great! I am trying to believe that my nightmare will be over in a couple of weeks too!

Cathy, thanks for responding. I too am still on tegretol, gabapentin, and baclofen!! Because of the small twinges that I am still getting he wants to wait to take me off of them. I see him again in 3 weeks.

Did your TN go away immediately after MVD? I had surgery on Jan. 28th and have NOT been pain free at all. I had 3 vessels compressing the nerve. Surgeon says I need to give it time to heal. All the research I have done leads me to think my surgery was a failure. Glad you are doing well.

Tina: I still have TN pain too but hate to admit it. I went to the county doctor today and he said that the TN pain could come from swelling since I still have a build up of spinal fluid. He thinks it will resolve eventually. I got more info from him than my neurosurgeon. I came back to work this afternoon for a few hours. I will do a little each day this week until I build up to full days. I wish you the best. It has certainly been a battle but I plan to win it in the end.

Keep us posted.

Tina: I don't know if your question was directed to me or not, but I thought I would answer it! It is hard to say if my TN pain went away after surgery because I was on medicine that was controlling the pain at the time. My surgeon also says that I need to give it time to heal, yet like you, all the research I have done also shows that this was probably not a success. I have decided that I am not going to give in that easy though! I see my surgeon next week, and the little twinges that I was having have subsided so he will probably want to start lowering my doses of medicine. Are you on medicine right now? My surgery was only a couple weeks after yours! Let's keep in touch - we will keep being positive and as everyone has also told me - give it more time!


I would enjoy talking with you. My NS and I are discussing MVD. I want to talk to someone who has been there. Can you tell me what to expect? What was it like? Did you stay in hospital? How long were you off work? Are you drug free or still coming off? How is the pain?

Any thing you could offer, I would appriciate.

Thank you,


Bobbie: If you would like to call me sometime I would be happy to talk to you about my surgery. Others have had better results so I don't want to scare you. I can tell you a good story about my neighbor that had it and then I can tell you my story (not fun). I will email you my phone number.

Take care.


Hey guys, sorry I've been sort of MIA. I've been trying to get back into the swing of things at work and it's been unreal how much work I had when I came back! I'm doing great. I do still have little twinges of pain sometimes but nothing compared to my old pain. The right side of my head is still numb and the docs said that might be forever or it might come back. Regardless I'll take numbness. (Just feels weird when you brush your hair!)

Tina: I couldn't really tell if the pain was gone immediately or not because I was still on a lot of pain medicine thanks to my tolerance. I noticed that the pain was gone probably three or four days afterwards. And like I said it's not ALL the way gone... more like 90%. I get the twinges every once in awhile. They shock me like someone reached out and slapped me. But they only last a minute or two and I'm back to normal. Unlike before when if I had an attack I was out for the entire day until someone could get me some pain medicine to knock me out.

Bobbie: The MVD is not something to be taken lightly. That's what I was told over and over. But for me I had exhausted all the other options that were viable. I'd been on countless meds, researched alternative medicine, looked at Gamma Knife and all. But nothing was viable. I made the decision to have the surgery against my family's wishes honestly. I mean they supported me with what I wanted to do but if it were up to them they wouldn't have chosen it for me. But basically what happens is once your surgery date is set you go up the day before to have all the pre-op stuff done (lab work, urine sample, another MRI etc.) Then you stay the night that night and surgery is early that morning. (at least for me) My surgery was on a Thursday. So I went up Wednesday, stayed that night, surgery that morning then I was taken straight to neuro- ICU for one day then transported to the neuro step down unit. Where they worked with me being able to get up, eat, and then wean me off my pain meds. They said if I did really good that I could go home on Saturday (a day early). I wanted to be out of the hospital as soon as I could. I ended up going home that Saturday and was pretty much quarantined for two weeks after that. I couldn't be around big crowds, sick people, I couldn't drive. Honestly that was the worst part was just being alone. I had FMLA for 8 weeks with my post op appointment Feb 25th. When I went back I was doing great they said I could go back to work early if I wanted to. I returned to work March 9th. They weaned me off my maintenance meds one pill at a time. Which worked. I'm not on any meds now. And it feels amazingly... weird haha. I got so used to my little pill box that now I get to wake up in the morning and not have to take anything and I feel like my routine is off. Like I've said before the pain isn't COMPLETELY gone... but it's a whole heck of a lot better. I can now FUNCTION without fear. I can eat things that I couldn't eat for four years. I am so thankful I decided to get it. But what my docs always reminded me... it's not a cure-all. It's not a for sure thing. And your decision to get it done needs to be made by you and with a lot of consideration and thought. Because it is MAJOR surgery.

Hope that helps! Message me if you need any other info.


Thank you Amy. This site has helped me more than any other sorce to make the choice. Reading what each person has gone through and how they were effected has been huge for me. Until now, I was alone in this. My support sympathize but can't understand. This helps. Thank you and continued good luck.