So I dono about this MVD being a breeze. I spent 24 hrs in Icu then less than that in a normal room. I think I coulda used another day in hospital. I’m feeling pretty miserable recovering. The shocks came back the first night in icu after staff gave me a cold pack to use. Bam. And the tears started rolling thinking the nightmare returned. But hasn’t happened since. (Thankfully) I’m so grateful and actually cried tears of joy just for waking up from the surgery lol. This recovery although has been pretty terrible. I have such crazy pressure pain and heart beat shwooshing in my ear right only. If I exert myself in the slightest bit. Hearing is extremely diminished as well. Which by midday today has turned to full on deafness and some severe pain. (Not sure what to make of this) The swelling in my neck was intense! And still can’t turn my head. I been sleeping a lot on and off. And just trying to keep on top of the pain. And taking the shortest cat naps which are driving me mad. I was really hoping the recovery would be easier than this (and I am NO stranger to pain!). I feel I’ve read a lot of false advertising. But then again I do have underlying inflammation issues. Feeling hopefully but very crummy… Am I sounding like a baby? 
PS One thing everyone was right about. One cool looking scar!
Hi Nanooo48. It will take time for the healing to complete. Looking at your photo there is a lot of bruising still there. Don’t be in a rush and take things carefully. If the pain in your ear continues then I would speak to your Dr/Neurosurgeon. Best of luck. Mary
Wow Nanooo48 sounds like a tough recovery! I have had a LOT of surgery. No brain surgery YET. But maybe soon as I also have TN. One thing is for certain and that is docs, medical staff, everyone minimizes what it’s like immediately after surgery and what recovery is really going to be like because they know nobody would do it if they didn’t. I have NEVER had a recovery be easier or less painful than I was told beforehand. And like you I have always been left feeling like I could have used a bit more time in the hospital. That is a pretty cool scar you have there and yes you do have some bruising still. I suggest getting a consult asap from an ENT (or maybe even a neuro-ENT) for your ear along with having your doctor who did the MVD keep a close eye on that problem too. I can totally understand your tears of joy just for waking up from the surgery but then kinda being freaked out by the pain from the cold pack. I think I would have done the same thing. We are still working on other treatments of my TN but MVD is an option as of my last visit with the neurosurgeon. Hope you recover quickly and hope you get permanent relief from all your TN symptoms!!!
So sorry to hear that your recovery isn’t going that great. Do you know if the neurosurgeon monitored your acoustical nerve during the MVD? It is very close, as you can imagine, to the trigeminal nerve and can be irritated during the surgery. Hopefully, that will lessen with time. Hang in there as this too shall pass.
Hey,
I am recovering from my mvd on the 20th… and mine sounds just like yours. A headache from hell that is just now starting to go away. Constant clicking and swishing in my ear that is in cadence with my heart beat. Scalp is soooo sensitive with odd stabbing pains. Doc says that there is nothing in my ears and headache should pass (which it finally is). I can say that I am finally getting comfortable sleeping with ny 8 pillows and am only getting up about 4 times a night instead of 10. Head ache is better as long as i dont bend forward. Just waiting for ear to clear up and stabbing pains in skull to stop.
I have neuropathy not neuralgia so the goal was put 50 percent chance of 50 percent pain relief. Some symptoms (tongue, gums, cheek) are gone, some are reduced (upper teeth pain) and muscle and bottom teeth are about the same.
The surgery was not a breeze at all. The headache was the worst and i felt like i traded one pain for another but i feel i have rounded the corner. Keep me updated since i feel that you and i are having the same post surgery issues. Hope it gets better soon.
Lisa
@Liligirl Oh man I’m so happy to read that. Thank you. Just two days away from me huh. Dang. At least we’re in this together! Not feeling so alone. I got my stitches removed yesterday and the np I been working with wasn’t there so I felt very untrusting of her. I still have the loud perfectly sounded heartbeats going inside my head, I also hear my own breathing. It was REALLY starting to concern me until reading your post. It seems to be at worst when I sit up or stand, but it’ll pretty much remain with me the whole darn day so I just keep trying to do things to keep my mind off it. Loud things like movies and cooking at the same time. I feel like my acoustics are extremely screwed up. Have you gone inside a grocery store yet? Or walked outside? I have actual anxiety because everything sounds so screwed up and though I can hear very poorly still out of this ear it feels loudly reversed on the inside. Maddening.
My cut is pretty sensitive. My ear kills just to the touch on the top of it. I do also get these head pains as well. Didn’t really bring it up with np because I didn’t feel like getting the DUH reply. The NP I saw yesterday gave me the clear to drive. So my first attempt was to a store around the block pretty much. It wasn’t a great experience. I’ve never been afraid of driving like that but I’m guessing I feel my major sense of hearing is all jacked up I don’t feel safe. Has your surgeon told you this can last up to 2 months?? Ugh.
So id like to consider myself a tough cookie. I don’t have all the help in the world so I’ve been doing a lot myself praying it doesn’t delay anything but I don’t have a choice. I hope you have all the help you need! Thank you so darn much for writing. Truly I hope you feel better soon!!!
Oh I am so relieved to find someone experiencing the same things. I havent gone into a busy noisy place yet but the top half of my ear feels like it is on fire. The PA wrote my clicking stuffed up ear to having the audible equipment in my ears during the surgery. He said my canals look great and really did not give me a time frame for it to get back to normal. My head is hurting above my ear to the side.
Just so glad the nausea has passed as well as the worst of my headache. My equilibrium is better today but i am still avoiding bending over for fear that the headache will rear its head again.
I have moments of weirdness other than the clicking swooshing in my ear. It almost gets echoey metallic at times if that makes sense. I havent tried driving yet because of the whole turning the head deal although the neck muscle is improving. I think we are rounding the corner, but i too would love to have a time line for all that i am feeling that isnt pleasant.
Wishing you both a speedy recovery, healing obviously, takes time. All the best.
@Liligirl there was audible things in our ears? I know the top of my ear kills lol. So today I won’t lie. The pains in the side of my head were pretty bad. Dealing with that and the heartbeat and breathing sounds was just too much to bare. First time I’ve taken a pain med like the rx kind in a week. I’ve pretty much spent the entire day in bed. I hope today was a just a bad day cuz it stunk but glad I met you since I just been laying here with my phone all day. Haha I have a weird one for you. The np told me this was normal. But when I touch the side of my head too hard or if I bend over instead of crouching I can hear my skull crunch. Are you getting that? I know sounds weird. But I’d hate to think my skull is actually crunching 
@anon67464382 thank you for the kind words. I def thought it would be quicker and easier to heal but keep being reminded it’s only 2 weeks. I hope if you have ever or will ever get MVD it is smooth sailing. The new update I’m not able to see your profile or anyone’s to know. 
️
No skull crunching here, but i am having a lovely ear ache right now. Inside the canal and of course the head piercing pains. Today was a better day, i hope that tomorrow is a decent one too. I am guessing that the sore head and stabbing pain in the head is due to the nerves in the head mending. In my surgery they put these plug type things in my ear to make sure that my hearing was not affected. I think it is pretty standard to do it. Can i say that i need to wash my hair but cant bare the thought of rubbing shampoo into a lather ontop of my skull. Not nice LOL. I guess we rate things by having more better days than not but i really wasnt expecting all these side effects.
Just had to take a pain med myself, partially bc of the skull etc but mainly bc my left over neuropathy. I think i will be spending another night on the couch. Arghh, throbbing ear inside and out. Skull piercing pains-- over it most definitely.
Question- are you having issues following or processing long pieces of information? I am fine with simple but go blank when I try to take in too much information at once.
@Liligirl darn. No crunching eh? Lol. I’m still on 1000mg tegretol and 30mg baclofen (when I remember) so my memory was already pretty bad. After surgery I def don’t absorb too much too quick or more like when someone is talking to me I ask them to repeat the second half as I have drifted off to nowhere land. If that makes any sense.
As for the hair washing it feels amazing to have washed hair. Although baby shampoo sucks for knots and I’m losing a ton of hair due to the stupid meds I’m on and when using the baby shampoo it’s coming out in clumps for some reason. It’s so discouraging. I was such a big fan of my hair 
But life is better.
I been getting sharp stabbing pains in my ear. I’m not sure if it’s from the surgery or from my TN because on the pain scale and sharpness it makes me think TN. But with all the different kinds of different pains going on not sure what’s normal what’s TN or what may be abnormal. (I hope all normal lol)
Are your stitches out yet? Did you get staples? I still have a lot of scab on mine it literally looks soooooo gross. And my scalp is super irritated as well. It rebelled against being shaved I think. It is scary to shampoo entire head though once stitches are out. There is a lot on the cut that you’ll want off in a bad way but my NP told me not to pick at it or scrub it. Just kinda let the water do the job. It’s just so gross lol. I’ve never had a surgery in my life girl and I pray to God this is my last!
Hello Ladies,
I had MVD surgery through Mayo on the right side only, though I’d been living with bilateral ATN for 17 years at the time. I had it about a year ago on 10/29/15 and was lucky enough to go to Mayo for it.
My incision was beautiful but yes, the recovery was awful. Luckily, at the time I had my sister and my (now ex-) boyfriend with me so I didn’t even have to attempt to go to the store or drive by myself. The worst day was around the 5th day of recovery; I was in agony after the drive from Rochester, MN to my sister’s place in Madison, WI the day before. DO NOT OVERDO IT RIGHT NOW. Take as much time off from everything that you can and rest. I was scared shitless of getting the staples out because it still hurt and I felt so fragile 10 days later, but that went amazingly well. I had a lot of pounding and swooshing of (Craniosachral) liquid in my left ear only (the opposite ear of the surgical side) intensely for a good 6-8 weeks and then more mildly after that. It often got worse when my remaining side was hurting. However, if your ear hurts to be touched and you’re having hearing issues, GET IT CHECKED. You could be developing an infection or who knows what, and loss of hearing is one of the possible complications of this procedure.
After I returned home to AK, I tried to go back to work at about week 4- bad idea. I also think of myself as pretty stoic and tough, but now I realize I went back too early. I couldn’t focus or concentrate very well, I was always exhausted, especially because I was recovering and yet still living with constant ATN on one side.
My whole story isn’t important right now tho, what I want to let both of you know is that I STILL get some swooshing and liquid sounds in my left ear, more than a year later, but it doesn’t hurt or affect my hearing or balance anymore so I don’t worry about it too much. However, I want you both to realize that I was told (but forgot too while going through it) that I wouldn’t really start to truly feel like myself or know how successful the MVD procedure was until about the 6 MONTH mark, and that was exactly right. After about 6 MONTHS, I finally started to feel like I had more energy again. The liquid sound went away for the most part, and I can count on the right side having almost no pain most of the time.
In retrospect, I would’ve tried to plan to be out of work for at least 6 weeks- especially if I was recovering alone (I have lived with this alone as well for most of the 18 years that I’ve been dealing with it, so I know how it goes. In fact, as usual, above mentioned boyfriend couldn’t handle being with someone living with facial pain, so I’m back to that and think I’ll stick with being single. People just can’t understand, for the most part, even when they try).
I wish both of you luck and would be happy to answer any questions. Please be gentle on yourselves and realize someone was just rummaging around in your brain- it’s NOT a small procedure.
Good luck ladies!
Christy
PS I used the reusable ice pack thing that they sent me home with from Mayo for 5-6weeks. It helped the incision stay in good shape, helped me feel a lot better when the incision was pounding, and reminded myself and others that I was still recovering too. I didn’t care- I brought that thing almost everywhere for a month or so and often slept with it on the incision too. It’s a bag, which is soft and waterproof, and we’d put crushed ice in it so it didn’t hurt to lay on. I was super lucky to have this man in my life at the time (even if it did overwhelm him eventually) to manually crush the ice in a towel with a hammer. Snow works great as well.
@christyr27 thank you Christy for sharing some of your experience. I’m sorry for the trials you went through. And losing your boyfriend. Welcome to the singles club lol! I’m glad you had lots of help. I did more in the first week than the second. Then people give me crap for over doing it as if I had a choice. Lol but then today I read you say don’t over do it in all caps when yesterday I paid the price for it. I ended up falling in the shower yesterday and threw out my back sooooo bad. Just prior to that shower I vacuumed two rooms, cleaned out the litter box, and did a load of laundry. Well my back went out my legs buckled and I just collapsed in the shower. Took all my upper body strength to get myself out of there so I can call my friend who was already on her way over for lunch to come bring me to urgent care unstead. What a mess. Def feel like I deserve this now though. Had to notify surgeon of the fall. The incision site is very very achy today but that’s really the only thing surgery wise I think it’s affected but MAN the worst possible time!!! It’s funny how you said that you had to remind people you are still recovering. Everyone just assumed I was fine before the stitches even came out! I am a very independent type a goofball yes. I make the best out of everything yes. I say I’m okay even when I’m not. BUT HELL PEOPLE! I had BRAIN surgery not a hang nail!!! Worst part is I work at a hospital and the management is like the least compassionate. My manager said I should be back to work in 2 weeks! Told everyone that too! So everyone just says well you should be feeling better now. And especially now after yesterday it just really has me fuming. It also amazes me the people that can’t and won’t even see me since I had the surgery. Why I have no idea but it hurts me a whole lot… Just wanted to vent that too… This hasn’t been easy. And at times I’ve even found myself breaking down in tears. Did you find yourself getting emotional out of NOWHERE?! Maybe it’s just my situation. I dono.
I reckon folk might steer clear because the situation is foreign to them, if they ask the question, which they will obviously feel the need to, “how did your surgery go?”, and they get an answer beyond what they are prepared for, and prefer, but which they suspect may not be the answer, “great thanks”, they wait to hear from others so they feel they are on safe ground. It is not going to be what you want or need but unfortunately I reckon is a fairly common response and you should feel no reflection on you.
Emotions, emotions. They are like a bucket, and your bucket, after all you’ve been through is probably pretty full, which is possibly why a minor stress gets this bucket over flowing. Not nice, but normal, we are only human, and if you react to this overflow with a minor eruption, it will do you more good than harm. Long term try to empty the bucket, the minor emotions won’t overflow.
Wishing you well
@anon67464382 wow those words cut like razors so true. Thank you. ️
Nanoo, I’m so sorry that you fell! But really? 
Vacuuming and changing litter boxes already? Oh my goodness, you are a stoic, independent trooper, aren’t you? However, even now when you’re at about 3 weeks, (right?) please be gentle with yourself. I paid for just going back to work earlier than I was ready to, much less doing that kind of housework and taking care of myself alone too. It’s funny, I’ve been through most of this 18 year journey by myself, but somehow I had someone to support me through my MVD, and boy, am I glad. If I didn’t, I know I would’ve done too much as well, so I understand where you’re coming from and your situation pretty well I think.
Thus, I’m going to be the voice that tells you it’s ok to rest still. It’s ok to call in sick if and when you’re exhausted and/or in pain. It’s ok to ask a friend to vacuum or simply let it go for now, so you can do just the litter box (I’d never ask a friend to clean mine either!) without falling down in the shower(!). I started thinking of my MVD as both a financial and physical investment that cost too much to mess up, especially if it was successful! And truly, you won’t really know to what extent it’s been successful until about the 6 month mark. Pain can come back so treat your head gently right now. Someone has just been messing with veins and arteries in your brain for goodness sake! Anyway, thinking of it as an investment helped me a lot.
Nanoo, I see and hear that you’re strong and independent. I think having chronic facial pain conditions many of us to keep working through pain and exhaustion, but in this case, take it easy. Who cares if other people think you “should be” feeling better- you probably are- it doesn’t mean you’re finished healing completely. Let yourself heal- ask for help as much as possible if you need it- this is not the time to be overly stoic. This is the one time to listen to the voice that asks, “am I really ready to do ________?” Take care. I hope you feel better each day.
~Christy
Just checking in. How are you. Headaches gone here-yay. Still have the head pain above my ear. Ear is better, meaning more sporadic. Neuralgia is still the same (part gone part still here). I am being way too lazy and I am bored but I realize that I am still not right so I will continue to take care of myself.
The clicking is gone. Neck is better too (as long as i don’t sleep in bed) I still can not sleep in bed. I still have to be propped up with no pillow touching the back of my head. i am having complete lapses of memory. not fuzzy memory but completely forgetting something that I did, saw, said. I want the head pain to go away so I have a better sense of my other pain.
I cant believe that you fell. How horrible. My man is luckily taking care of me and I am ignoring the mess to the best of my ability. I am sorry that I lost touch for a while. I had some bad days mixed in there and I wa feeling like a bit of a whiner and didnt want to share my woes. I understand the need to control our environment. Cant relax unless everything around is in order. But the priority is you. Let the dusting and vacuuming go. Limit yourself to the cat litter box, groceries, and some clean clothes. I am so sorry you are going through this alone. Xo
@christyr27 I love you, your mind and your advice. I am thankful for your reassuring words. I have not gone back to work yet. The surgeon said I could if I wanted to now but the np was like just relax lol. I have a very high stress job. The longer I been out the more afraid I am to go back! Def no easing into my position unfortunately. An investment. Man like you’re inside my head?! I wish I was able to acoplish more honestly. But thinking? I sure did do a lot of that. It’s funny. I’m a whole month now. Bought a box of kitty litter and carried it up to my apartment and the whole side of my head got reeeeally tight. Felt soooo weird. I am doing pretty good I think tho. Have a tiny bit of stuff coming out of my ear which lead to a bit of a scare last week and they had me rush in to see surgeon who then acted like it was nothing. It hasn’t gotten worse. It is pretty sporadic and usually only happens after a hefty sneeze so I’m not so worried. No headache or anything. Over all? Just have so much anxiety getting back into my crazy schedule and life. I just hope I’ll fee ready when it comes. Thank you for your words. Truly. Literally when I’m feeling so down and super hard on myself you really ground me with your kindness and understanding of this particular situation… ️
@Liligirl heyyyy my MVD soul sista! ️ I am doing alright! No headaches here. And if I do get them they are brief and usually resting helps. My incision area still feels very weird and sensitive like and I totally have the same weird feeling laying on the back of my head. Especially if I roll head towards surgery side. Today has actually been the first best day with my hearing and I’m so happy I’ll be able to sing soon again yippyyyy. The pressure is still there. Especially when I talk it builds and builds. Very odd. I very rarely hear my heartbeat and my voice for the past two days finally so I’m content things are going in the right direction here. As for memory my short term is still pretty whack but it’s been that way with the medication as well. Still have 2 more months on this same dose til they start tapering me off. I wish sooner cuz my hair is relentlessly falling out still. Bummer. I don’t advise lifting anything heavy just yet cuz I felt something super weird just before so try to take care not to do that lol. I’m up and about for the most part over here but miss busy body Me still has had my days where I just don’t leave the house or my pajamas like even yesterday to be honest lol! When my body tells me to chill I chill. I did make a new bff though! His name is Netflix! LOL 
PS my skull still crunches. LOL So gross.