Everyone says, “make sure you rest after mvd” but how long are we supposed to be resting here? I have a superman triathlete surgeon who thinks everyone should be healed in two days (ok that might be a BIT of an exaggeration), but seriously how long did everyone really rest for or how long do you guys think is appropriate. I know everyone is different, but wanted to get some ideas. I don’t think I rested enough after my first mvd. I tried to go back to school at 3 weeks and I was trying to garden (hauling way more weight than I probably should) at like 6 weeks. I ended up with a csf leak that made a big bubble on the back of my head pretty far out from surgery (oops). Now I am 3 weeks out from my second mvd, which has involved a spinal tap and a blood patch since, and I’m staying with my parents who won’t let me do anything. Just wondering what everyone else’s experiences have been.
Hi Heather,
Sorry you are having such a difficult time right now. Seems as though you have been thru alot with your second surgery. I understand hiw difficult it must be to go slow, but from what you said you did too much the last time and things happened. Now it seems as thiugh you have been thru alot this time. Go slow , take your time and try to heal yourself. Everyones pace is different our bodies tell us when we are doing too much. As a parent i understand your parents not wanting you to do too much, its being a nuuturer. You have been throu alot dont be too hard on yourself. I understand the pain had my MVD left side 16 months ago and pain is back ,just got diagnosed with right side in jan. had to cancel surgery personal reasons. Its tough to deal with pain on daily basis. Know that you have a place to vent. Hang tough be strong we are here to listen
My best
Joanne
I didn't do anything for 2 weeks after surgery. I couldn't even walk straight. I started moving around more during the 3rd week and went back to work after the 4th week. I really wish I could have taken a 5th week off, but needed to get back to my classroom.
As far as your surgeon goes, I used to work in academic medicine and my experience was that most surgeons I came in contact with were this way. It's part of their nature and the reason many of them became surgeons in the first place. We used to call it "the God complex." Some of them had changes in attitude when they personally experience illness.
I hope all is well with your recovery.
Kathy
Listen to your body Heather, you’ve been through a lot.
Take each day as it comes…better to get more rest then risk any other issues.
Thinking of you,
((hugs)) Mimi xx
I’m still practically bedridden 4.5 weeks out. I get exhausted so easily and it seems like if I do too much at all I end up in pain 
so frustrating after two brain surgeries to still have this damn face pain!
(( heather )),
I know it’s super frustrating to still be lying around, no energy and disheartening to still be in pain.
Any major surgery affects our body for up to a year, you’ve not just had mvd, you’ve had two and complications…
Your body needs as much rest as you can stand, don’t push yourself too hard, and try not to be too hard on yourself. ( easier said than done, I know)
The face pain may very well diminish as your body and brain heal…don’t lose hope.
Re-evaluate at 6 months post-op.
in the mean time focus on ways to keep your mind busy, have adequate pain relief, and let your body do the rest.
Positive thoughts! Mimi
Thanks so much Mimi. Sometimes you just need to hear it from someone else. I feel so damn lazy, and I start to wonder if I’m subconsciously just trying to get out of doing anything. I don’t want others to see me as lazy and taking the easy way out. My parents are so good and non judgmental. I’m living with them now and my mom works from home a lot to take care of me. They won’t let me drive in my condition (I can’t blame them) so they try to get me everything I need and let me sleep as much as I can. We sold my house literally 2 days before my mvd so they just packed up my entire house and moved it for me while I’m recovering in a room at their house. They wouldn’t even let me go to my house because they were afraid I’d try to do too much and set myself back. They are the best parents ever. My mom suffers from horrible migraines so she at least has something to relate my pain to. I just feel like I must be crazy sometimes. That this can’t all be happening to me. Everyone else wakes up pain free and I wake up in pain TWICE??? I know when I come on here that’s not true, but I’m sure somebody I know has at least thought it. It’s so easy to drive yourself nuts with all these thoughts when you are laying in bed all day. Thanks for listening to me vent and for making me feel less crazy (I wasn’t completely sane before TN if we’re being honest lol)
I just spoke to a woman who has had mvd twice and gamma once, no relief, doctors aren’t being very helpful either as to the next step…BUT there is always HOPE! I was able to suggest 2-3 options she’d never heard of…this is hope.
Always options available and different things to try, as exhausting as it is to advocate for ourselves, we MUST, but we must also realize as hard as it is that we’re not super human!
This pain and all the life consequences wear us out. We lose independence and must rely on others, that’s a hard pill to swallow. I’ve had a terrible time adjusting, but in the end I keep telling myself there is no other option, I must do this to get well, this is NOT forever. I refuse to believe that!
Express your gratitude to your parents, and do your best one moment at a time to get through…that’s all we can do.
For the record I wasn’t that sane before this either lol! ; )
We’re in this together
Mimi xx
I am 9 weeks post op. Had a csf leak week 5 and had a lumbar drain. I went back to work at week 6. I ended up taking many half days. I am still suffering from headaches and the last week horrible neck pain (opposite from surgery) started. Having trouble with doctors on why…I don’t feel it’s muscle related. I still go directly to bed once the kiddies go down, but can seem to sleep tonight, Haha. I get very frustrated with myself feeling lazy, but you can only do what you can!
Xoxo
Hi SaraM29
Sorry to hear our having such horrible pain after MVD. Your such a fresh Post-op need to give this some time. The same thing happened to me after my surgery but not so early on. My neurosurgeon finally did a MRI 15 months after and found I had a compression on the right side now. Am not saying thats going on with you. Couldn’t believe it. It was headaches at the crown radiatimg to my neck, first he thought occipital but no, its TN compression. Unfortunately being so new from surgery there is still healing and inflammation. It does take awhile you just had brain surgery. You need some time to heal am sure if it persists on the opposite side your doctor will want to do an MRI. Its so frustrating now dealing with pain on the other side maybe phsical therapy or some heat. I use heat every nite on my head. I use heat to keep cool,breez off my head that triggers non surgical side. Keep us posted on how you make out.My Best
Hi Tatto20
Oh no, that is what I was afraid of! I have bilateral TN, it started on my right side, but the left side is what wore me down because the pain was on a daily basis. The right side was always occasional attacks that would last for hours, but I would be great in between. My neuro saw a clear compression on the left side and didn't see a compression on the right (just a narrowing) so we did the MVD on the left. I didn' t know if TN pain went down into the neck area or not. I haven't had any TN pain since surgery at least as I felt it before. My left side is great...my right side it seems the pain is right behind my ear and goes into my neck. The nurse told me it was just muscles and to see my GP but creams, ice packs and heat packs don't help.
On my right side (prior to MVD) only chewing was a trigger and only came on every now and then...left (MVD side) just about everything was a trigger and pain bothered me every day. My TN started on the right and moved to the left. I called yesterday and someone had just cancelled so I am going to see my original neurosurgeon to get his opinion.