I am having an MVD this coming Thursday and am needing some input on experiences that others have had right after surgery, from waking up in recovery, to being in ICU, to regular room, and then after getting home. I am just trying to prepare myself for what's to come. Thanks in advance!
The last thing I remembered was them saying "Lets go meet your OR team" after rigging me all up and starting to wheel me down the hall.
After that I remember coming to in ICU, doing an internal rundown or "where am I", "does everything work", etc and then thinking "Ok it's showtime" and waking up. I felt like puking immediately but they gave me some stuff in the IV and it went away, but they had to give it to me repeatedly throughout the night. All my face pain was gone completely.
The biggest pain for me was where they peeled the muscles off the skull to expose the bone, for me they did a massive cut and peeled everything way way back:
But muscle relaxers took that pain down. I was more interested in them than opiates. For the most part things were numb around the incision.
Obviously you can't strain much or you'll rip the internal stitching. Have to do a lot of resting...a week later they take the staples out which is painless. I was lucky and healed quickly, released from hospital after 2 nights, went to work full time 9 days after surgery, but most people probably take 2-4 weeks or longer depending on your bodies reaction.
edit:: goin in I was worried about having a catheter, but I didn't even realize they put one in until they went to pull it out...which was uhh interesting.
Oh my! That is a large incision! Yes, I am worried about nausea, as I get sick just from riding in the car. Hope I can heal as quickly as you did!
I have bilateral ATN and have had MVD on both sides this year. The first one was in January. I remember waking up in recovery feeling pretty good, no nausea at all. I spent two days in ICUand was released on the third day. I did have surgical pain and took the pain meds regularly every six hours and that seemed to manage it well. I did have a spinal fluid leak during the procedure, and I think that caused the headaches I got upon standing up for the first few days. I also had some trouble with balance, but that resolved pretty quickly. I had to fly home a week after surgery, and used a wheelchair in the airport as walking long distances was quite a challenge.
My second MVD was on October 14. I did not have a spinal fluid leak this time, and spent one day in ICU, and one day in a step down unit. I felt better this time for the first week, but did have some really bad headaches the second week. I am still tired, but feeling stronger every day. Both times, I had my stitches taken out two weeks postop.( you really won’t be able to wash your hair until,the stitches come out. My surgeon did give me the okay to have my sister wash my hair in the sink, but the incision has to remain dry.)
You will be very weak and tired for the first few weeks, so be sure to take it easy.i found the most comfortable way to sleep,was in a recliner, as lying flat caused pressure in my head. Be sure to take stool softener, and maybe a gentle laxative like Sennokot. (This may be too much information, but the pain meds and anesthia will take a toll on your system!) You should not lift anything heavier than five pounds, or do anything even mildly strenuous for the first six weeks.
Both times, I was able to work on my computer within the first week. I have a home based office, so I didn’t really take any time off.
I wish you well with your surgery, and am available to answer any other questions you may have at anytime.
Best
Christine
Wow! That gives me great hope, Christine! I just want to be pain free, and back to my pre-TN self. Thank you, and I am sure I will have many more questions :)
I had my MVD surgery almost three yrs ago. It went very well. I checked out of ICUS the next morning, I am uncomfortable in hospitals, noisy, can’t sleep, catheter, compression bandages on your legs, etc. I just wanted to go home to recover. I am a singer, and went back to work in about 10 days. I had some pretty nasty headaches for a couple days and nights, but pretty good recovery. My surgeon does a lot so these and made a very small incision, and I didn’t have too much shaving of my hair, which I was admit was a bit of vanity for me…
I am one of the few people who still have numbness in my face, around my eye and mouth. It has slowly returned around my cheek, but it was well worth it to no longer be in pain, or fear of it coming. I got my life back! The numbness does not affect my appearance. The reason I am still numb, is probably because the surgeon said my nerves and arteries were so entwined, it took hours longer to correct it and that damages the nerves. Good luck, wishing you the success I have received from the surgery.
I had MVD at the end of May. I have hadd no pain since the moment I woke up after surgery. I threw up for the first two days, but was encouraged to eat anyway. The Neurosurgery Intensive Care Unit was wonderful; they checked on me at least once an hour, sometimes more often than that, and helped me get up and walk the hall. They did a memory check (I was surprised to miss some words, and to have trouble subtracting, but I still "passed the test"). Then I was moved to a regular unit (where I wasn't so spoiled). I was released after 2-3 days, and I was told not to drive or lift anything or exercise (except walking) for the first month, and not to turn my head. I was able to preside at a conference about three weeks after surgery, and felt great. About two weeks after that I was cleared to drive. I'm a teacher, and happily went back to work in the fall. In mid-October I had a final checkup and am now free to exercise. I found I was often tired at first, and the surgeon had "prescribed" just being lazy. A nice way to spend the summer if you can. I don't have any pain, but I do feel some tingling in my face on the TN side (right); the feeling tends to be more intense at night, but I am able to sleep and wake up feeling fine. I am hoping this will go away in about a year. About hair: I was told not to wash my hair for a week. Then I went to my local salon and they were great. The stylist braided my hair to keep it away from the incision. I was told by the dr. to wear a hat, so I did--and it hid the incision. The braid/hat thing lasted until August; by then the incision was completely healed. The incision did itch a bit at the start. I also was told not to get my hair colored for three months. My hair grew back, and no one would ever know I had surgery.
I have a severe case of left side TN. I had 2 MVDs in 2012 (June and Nov). I was in the hospital for 4 day and recovered for approximately 8 weeks both times. I am set to undergo an exploratory surgery and MVD in Dec. My pain keeps returning and it is as painful now as it has ever been. I have seen multiple doctors across the country and I have one of the worst cases they have ever seen given that I am only 34. We are hoping that the third time is the charm!
I do not remember most of either hospital visit as my headaches were so severe and I have a high tolerance to pain meds so they had to give me more than usual. I wish you the best of luck!
I had my surgery at UCSF. I was scared of the surgery but could not stand the pain, so almost looked forward to it. I was in ICU for a day and then in a private room for another day and then went home. My balance was a bit off for awhile and the incision site hurt the most BUT no more facial pain…a bit of recovery but well worth it!!! Good luck and all best.
Hi Proverbs31 Mom,
That is a great username. You won't have to worry with a description following you like that chapter.
I have had two MVD surgeries. My TN is on the right side and the first time it was unsuccessful and after about 8 months the pain returned. I lived with it for another 8 years before I went in a second time, but this time I haven't had any TN pain since. Be God's grace I am pain free. The surgeon told me what he had done wrong and fixed it.
I did tell my surgical team and especially my anaesthetist that I was easily nauseated and that normally post surgery I would get really sick. They adjusted my anaesthetic and this time I went right through it and out the other side. I did have some reaction to an anti-inflammatory drug, but the reaction only lasted about 24 hours and the nursing staff and my wife and daughter really helped me through it. I was having some hallucinations and was kind of paranoid, but it passed as the drug wore off.
Now I am down the road about 11 months and haven't felt this good for about 22 years. I began my first episodes of TN in 1992. I've even lost about 35 lbs now that I'm off my meds. There is life after TN, especially if God is on your team. Lots of prayer will help. I had people around the world praying for me this last time I went in. I went in on Monday and was home on Thursday. After about a week of bedrest I began to get up and active and within a couple months the surgical healing was complete. I know you'll be all right. I'll pray for you.
proverbs 31 mom said:
Wow! That gives me great hope, Christine! I just want to be pain free, and back to my pre-TN self. Thank you, and I am sure I will have many more questions :)
I had my MVD 19 months ago…I’m 80% pain free have headaches, pinches and tingles but bearable …spent a few hours in ICU and went home 2-3 days after…sat up the next day felt a bit drowsy but ok…couldn’t sleep at all the first days… fainted the first time I shower, luckily my husband was next to me so didn’t hurt myself…felt tired the first weeks rested alot …started exercising about six weeks later…In my case I didn’t even had a chance to think about having the surgery everything happen so fast, 'cause the electric shocks where too hard…the drs diagnosed me immediately 'cause for me its hereditary, I’m a third generation with TN…go ahead with the surgery is the best thing…everyone’s recovery is different… but as I’m reading most of us have about the same symptoms… good luck and put yourself in God’s hands, everything will be alright…Delia…
Well, it looks like the others on here have pretty much covered almost every possibility, so I will just say that every person experiences their surgery and the after effects in varied ways, so there's no set standard experience, although I would say that overwhelmingly those who have had the surgery have been positive about it. I found drinking 2 litres of water a day afterwards really helped recover from the after effects of the anesthetic (which again, I think everyone experiences differently). I also think that if the surgery is successful, you should probably not be feeling TN pain immediately on waking, although you might have some pain from the incision site or a bit of a headache which might persist for a day or two, so no TN-specific pain is a good sign. I believe it helps your recovery to get up and about in the day or two afterwards, but be guided by yourself, how you're feeling, and so on. I think those like me who detest lying about in hospitals as a general rule will get up and move about very quickly so we can get home quicker! All the very best for a fantastic outcome!
I'm hesitant to respond to this because I don't want to frighten you or fill you with second thoughts about going ahead with the MVD, because I think the majority have success or even some degree of it, not so with me and what happened while I was in there gave me worse pain than before I went in...In a few days it will actually be exactly a year since my aborted MVD and I'm still suffering under some of the consequences...But I feel like I should put it out there as something to be aware of - The potential of this was not at all discussed with me, since I think it was completely unexpected and even in the neurosurgeons words, extremely rare...
My procedure was going fine, until the point they opened the dura...And my brain went a bit bonkers at the intrusion. Or, as they put it to me in the oh-so-easy to understand *eyeroll* medical terms, 'significant herniation of the cerebellar hemisphere'. They aborted the MVD, closed me up and I spent nearly 3 days in HDU, then another 5 on a regular ward. I had been having some daily pain before the MVD, but then on the 4th day after its attempt I had a cluster that crippled me and panicked the nurses (which I felt terrible about!), something I hadn't experienced for several months prior.
At the 6 month mark I had another MRI, which showed the swelling had come down a little, but not nearly back to normal, and nowhere near a point where they would consider looking at surgical options again. I've just had another one, and am left twiddling my thumbs again, waiting for someone to tell me something...
Incision site/right side of my face were numb, but that gradually returned in patches, although some parts have remained numb. I've also suffered some minor drooping of my eyebrow etc. The residual effects are worse, slurred speech at times, memory loss/confusion, some hearing loss/tinnitus, balance and coordination issues, muscular weakness, the list goes on. Mine is a particularly bad case, and something very, very unlikely to happen to you, but felt I needed to say it...Because nobody warned me.
I do wish you all the best and a successful procedure that leaves you 100% pain free, every one of us deserves the same relief from the TN nightmare. I'm so sorry if I've scared you :(
I'm facing this surgery too. My doc at Duke told me that the older I get the more chance I have of not being able to get the surgery and that meds are short term. That's enough to make me go ahead with it. I believe, given the timing, the email about this discussion string is a miracle as I wanted real information from those that have gone before. Best of luck to you and thanks for starting the string. Thanks to all that continue to respond to this site when their pain is gone. We are all so very much in this together.
Hi, I had my MVD on 28th nov last year, I think I was just so excited and looking forward to it (anything was going to be better than the horrendous pain) I didn’t stop to think of the recovery… But mine was uneventful, I woke up in recovery feeling wonderful, spent two days in ICU, because i was vomiting, then three days in a general ward, I remember desperately wanting to go home, I had a wonderful scar too, which my daughter thought was very cool, I was a little bit wobbly when i first got out of bed, but it was all good, no head pains. I was slowly taken off my meds, but unfortunately on 26th dec the pains came back… BUT I would encourage everyone to have the MVD, just because it didn’t work for me, doesn’t mean it won’t work for you, I am never sorry I tried it… I would do it again in a heartbeat. One year later I still have a numb right year, no hearing lose though, and my face pains are under control for the moment. I wish you well, I will burn incense for you on Thursday, and be thinking of you. Love Anne
I ahve two MVD's. The first was on my left side in 1998. I woke up a bit nauseaus and had ringing in my ears for 4 weeks. However, this went away. I had a slight relapse after 7 weeks but the neurosurgeon told me to increses my medicine for two weeks and then wean back down. He felt that the nerve just needed more time to calm down. After that episode, I was pretty muchh pain free except for a slight reoccurrence after two years. I then went on a maintenance dose of 300 mg per day of Trileptal.
In August of this year, I had another MVD but on my right side. I woke up pretty much free of nausea and am weaning off medications as we speak. I am a funeral director and was able to find another funeral director to cover my business for a week. I was careful not to lift for a month and my hair hass now grown back. I have some numbness and watering in the right eye but will trade that any day for the pain.
I hope that all will go well for you.
Hi, Congratulations on deciding to take this step. A link to my story is below. I have had NO TN pain since my surgery and I take no medications. It gave me my life back. I wish you all the best and hope it does the same for you.
My experience was a little different than those posted. I did not try all of the other options available went directly with the MVD, as I was told they would only delay the inevitable and, in a polite way, referred to the fact that I was not getting any younger (haha). I was 49. Needless to say, I was terrified, I have undergone only one other surgery and the thought of them going into my head, yikes. As the day got closer, the more I panicked, so they prescribed valium to help calm me down. I had the surgery in January 2012, I was not in ICU, went from recovery to a regular room. I was given anti-nausea meds from the beginning so I didn't have any vomiting afterwards BUT the pain was still there. I couldn't believe it, I went through all that for nothing? Doctor said the surgery was a success and I should be pain free but I wasn't. Had an MRI done just to double check and everything was the way it was suppose to be. Doctor had no explanation as to why I was still having the pain, so after 4 days they sent me home. I went to bed as soon as I got home and upon waking there was no more pain. I was back to work part-time after 3 weeks (doctor wasn't happy but I was bored and the work was piling up) and full time a week later. The only issue I had was being really tired, it took months before I felt like myself again. Since then I have had maybe half a dozen "twinges," they aren't painful, kinda like muscle spasms. Incision area was small (not like the picture posted previously geez!) and they shaved only a small portion of my head so my hair came down enough to cover the area so you couldn't even see where they operated.
I hope your surgery is a success!
Please, if you're considering an MVD, read the little booklet, "What Time Tuesday" by James Tomasi. Two years ago I was ready to go for an MVD when my sister sent me that booklet. I visited an upper cervical chiropractor just north of Philadelphia, since my research indicated he was one of the best in the business. When my wife and I walked into his office, the shocking was so severe I couldn't talk. My wife explained things and I nodded my head. I hadn't been able to chew, and was reduced to swallowing down yogurt and other soft food. Even then I'd get severe pain. I couldn't shave or brush my teeth without excruciating pain. Wind hitting my face would hurt like crazy. I tell you it was horrible, which was why I was ready to consider an MVD. At 32 years old, my life was pretty much unlivable. I walked into his office on Monday morning not talking, and walked out talking. That evening I ate a steak dinner in celebration with only one or two shocks. Tuesday they came back. We returned every day for three days, but I didn't see the same improvement Tuesday and Wednesday. We went back home better, but not complete. On Friday, a miracle happened. The pain completely disappeared. I had like one or two very mild shocks all day long versus hundreds that I had been experiencing. We kept returning once or twice a week for several weeks, and within 3 weeks, I was 100% symptom free, and remained that way for about 18 months. Then this summer my vehicle was rear-ended and my neck violently wrenched. Within a week, the pain returned and got bad fast, although I was still talking. This time, I headed straight to the upper cervical chiropractor. Within three weeks the pain was 100% gone, and I remain that way today. You may think this sounds like a commercial, but I assure you it is not. My personal belief is that MVD's varied success rate may be partly due to the trauma of surgery sometimes bumping the neck back into place to relieve pressure on the brain stem. If you do choose to go the upper cervical route, I strongly recommend going daily for 3-5 days, and then backing off to two times per week for one month. From my experience, the neck quickly pops back into the old position, sometimes within hours or even minutes of a visit. Once the ligaments adjust to the new position, then the same things happens in the right way, and you won't have to go back unless there's trauma to the neck. Also, from my experience, the nerves take 3-7 days to calm down after the pressure is gone. In any case, I wish you God's blessing and success on your journey...and complete healing whatever way you choose to move forward. Always remember God cares deeply for you, even in the storm!
I had the MVD 17 years ago at a clinic in Boston Massachusetts. When I woke up in recovery I was sick to my stomach and my head pain was the worst I ever experienced. I was in the hospital for 9 days with servere pain and every time my doctor came in he would tell me it will get better, IT NEVER DID. What I found out later was he had Cut and taken out 60% of my nerve, so now the left side of my face and head is numb and I have been in constant different degrees of pain from a 3 to a 9. I have been going to a pain clinic and have tried all types of meds and pain-killers ( even giving myself shots of morphine). All the stronger pain-killers made me sick to my stomach or when I reached the amount that would help the pain I could not function because I was too drugged out. Whatever you do, don't let them cut your nerve. I had to retire from work as an accountant at 50 years old and now I am 67 and my wife just retired, but we still cannot make plans to do things because I am never sure how I will feel. My pain level can change in a second. I am not trying to discourage you but this is my experience. I know other people in our support group who had the MVD and are PAIN FREE. I will be praying for you as Jesus Christ is the only way I make it through some days. God Bless you, John