I have my MVD surgery in 2 days and I am so scared it's getting me sick. Can someone PLEASE tell me what to expect and anyone with A TYPICAL TN that had the MVD please tell me what they found?, how you feel when you wake up from surgery?, and do you feel better? I would be very thankful if someone can help me out. Thanks Connie P.S How long were you in the hospital?
Hi Connie
I have bilateral ATN. I had MVD on January 25. As soon as I woke up,from surgery, I noticed that my burning, boring pain was GONE! Even though I had been on the maximum dose of Gabapentin that I can take, I always had the burning pain. I thought it was a miracle to have that pain gone. I had one large vein lying on top of my nerve, and another one pressing up against the nerve from under neath. My surgeon removed the vein on top, put a pad, and just padded between the other vein, since it was not in a good position to be coagulated. When I woke up, of course I had pain from the incision, and from the surgery itself. In order to do the procedure , your head must be placed in a halo ( this is done after you are under). I did have one small cut on my forehead from that, and a few sore spots on the back of my head. I did, and still do have some muffled hearing in my right ear ( the surgical side) but this is from fluid build up in my ear canal caused by the position your head is in during surgery. I am taking a decongestant to help clear it up, and it is getting better everyday. You will have swelling in your neck and head, of course, and your neck muscles will be sore. You will have a catheter, and compression bandages on your legs to prevent blood clots, as you will not be able to get out of bed for at least the first day.
I honestly felt much better than I thought I would. I expected to feel as if I was bit by a truck, but only felt like I fell down a flight of stairs! I had my surgery on a Friday, spent Friday and Saturday night in ICU, and was released at 2:30 Sunday afternoon.i had wonderful care in the hospital, but was happy to leave. Since I traveled from Georgia to NY for my surgery, I spent the next few days with my sister. She has five children, so it was not the quietest house, but I did get lots of rest. I was able to be up and around quite a bit, but did not leave the house until my husband and I flew home on Friday. I did use the wheelchair service in the airports, because I was still quite weak, but had no problems with the flight.
Since I have been home, I feel,stronger everyday. I am down to one or two pain pills a day, and am still without TN pain on my right side. I am not comfortable lying in bed, so have been sleeping in a recliner. I still get tired quite easily, but as I work from home, I am back to work ! No lifting, no driving, no housework! I have wonderful friends who are bringing meals, and my two teenaged daughters have been very helpful too.
I know you are anxious, and this is only my experience, but I hope it helped
you in some way. I am so happy I had this procedure, and I will have my left side done in the summer! Please ask me any questions,I am happy to answers them if I can.
Best of luck to you!
Christine
I am so glad Christine replied to you. I haven't had surgery..........YET. I am trying to hold off for at least another year and keep it under control with meds. Also, mine is TYPICAL TN, unlike yours. But I felt the need to reply and tell you to please try to relax and not be so nervous. If you have a good surgeon, you will be in good hands. I wish you the best of luck sweetie and please keep us posted and let us know how you're doing. Much love and prayers for you. (((((((((((hugs))))))))))
Connie - I had MVD Oct. 2011. Mine is TN1 though.
I must tell you that if you are gonna go for it - don't worry too much
The SOONER one gets diagnosed and into MVD the SOONER the statistics say the odds are in your favor.
I was a nervous wreck, took anti-anxiety pills and came on these boards for dayyyys before surgery in another state.
I was In ICU 1 night - regular room 1 night.
My biggest fear was the anesthesia -- I don't know why - but it's behind me now, and glad I did it!
Thank you guys... tomorrow is the day and i plan on recording everything for others.
I havn't had a mvd but I also have atypical tn and wanted to offer my support! They found compressions on both sides for me but im not sure that my pain is tn i believe it could be neuropathic cause my pain started with a tooth then they did a root canal and it failed meaning i was in more pain afterward so i'm not sure..But anyway try not to worry too much maybe you can take some valium.. I will be thinking of you keep us posted!!
Hi Connie. I had my MVD 12 months ago. Worked a treat. The build up towards the surgery is the hardest part. Afterwards is easy as the staff will walk you through every step. I don't remember any surgical pain afterwards just an odd pressure that felt like a volcanoe brewing. that's because they cut the dura I think to reach the nerve. Sleep was tricky due to this sensation. I slept sitting up with my head forward on a nest of pillows a few times. Give anything a go. My hospital stay was four days.
Important note. I went home feeling so good after the mvd that I did some serious housework vacuuming etc. Ended up in hospital again for a week. TAKE IT EASY for a few weeks.
Best of luck!!!!!
Good luck to you! Pray that God guides the surgeons hands for a perfect outcome. 
Connie,
I had my MVD 3 months ago today. I had TN and ATN on the left side. The NS found 3 nerves (including the trigeminal) compressed by 2 arteries. These compressions had never been seen in any scans. Even though I woke up from surgery in a lot of pain, I could tell that some of the TN pain was gone. Not everyone feels some kind of relief immediately, so don't worry if you don't. My ATN pain was the first to go completely. Little by little my TN shocks went away. I get a random shock now and then, but nothing like before. My surgery was on a Monday. I was in ICU Mon-Fri and in a regular room Fri-Mon. 7 days total. I was there a bit longer because I had a lumbar drain placed and then had a CSF leak from the drain. So my case isn't what happens to everyone else. I was taking daily pain medicine and a muscle relaxer for 2 weeks. After that I was taking it only a couple of days a week for another week or two. Ice really helped my pain, especially the first week.
I hope all goes well tomorrow and you have good news soon!
I will say a prayer for you!
Connie Adams said:
Thank you guys... tomorrow is the day and i plan on recording everything for others.
Will be thinking of you, best of luck!
Positive thoughts, can’t wait to hear about your successful experience!!
((Hugs)) Mimi
You have many friends here thinking of you and sending positive thoughts. I know that God will guide the surgeon and be at your side throughout your experience. Think of us all as your guardian angels!
Thinking of you!! Please let us know how you make out
Wendy
Thank everyone for seeing how im doing. Did you have a plugged ear? I have had a plugged ear since i woke from surgery, its been over 2 weeks now.
ihold said:
Connie,
I had my MVD 3 months ago today. I had TN and ATN on the left side. The NS found 3 nerves (including the trigeminal) compressed by 2 arteries. These compressions had never been seen in any scans. Even though I woke up from surgery in a lot of pain, I could tell that some of the TN pain was gone. Not everyone feels some kind of relief immediately, so don't worry if you don't. My ATN pain was the first to go completely. Little by little my TN shocks went away. I get a random shock now and then, but nothing like before. My surgery was on a Monday. I was in ICU Mon-Fri and in a regular room Fri-Mon. 7 days total. I was there a bit longer because I had a lumbar drain placed and then had a CSF leak from the drain. So my case isn't what happens to everyone else. I was taking daily pain medicine and a muscle relaxer for 2 weeks. After that I was taking it only a couple of days a week for another week or two. Ice really helped my pain, especially the first week.
I hope all goes well tomorrow and you have good news soon!
Connie, I have not had MVD but have spoken to several that have. Crash girl a Moderator here had the same as you after and it did gradually recede. Let us know when it does
Hi Connie, it is nice to see you back on here! I hope your surgery went well, and that you are feeling okay. I had my MVD on Jan 25, and still have the plugged ear.it is gradually getting better, and I think it has to do with the swelling from the surgery. I am still sensitive to lid noises on that side too. I had my GP check my ear when she took out the stitches, and she saw a little fluid build up, but nothing to be concerned about. I think we just need to be patient, as hard as that can be!
Please let me know how you are doing when you have the chance.
Best
Christine
So happy you made it through the worst fears!!!!
Keep Posting!
Hi Connie! Glad to hear from you. Yes, I had a clogged ear. It lasted for almost a month. My NS said it was normal due to swelling and it did eventually go away. I saw my GP to make sure there was no fluid build up because i was getting a little nervous. (It’s hard not to be nervous about a lot of things post-op.) It’s annoying, but it eventually fixes itself. I hope you feel better every day!
Hey Connie! I had my MVD in October, and as jackie mentioned, I had fluid in my ear, it sucked and lasted about 3-4 weeks. They put me on steriods and nasal spray, but I had no hearing in the right ear for close to two weeks. I also got thrush from all the antibiotics as well, so I had to treat for that. I am allergic to most medications, and anesthesia, so I was really sick after the surgery, but I was only in the hospital for 3 days total.
I can honestly say, once the ear thing cleared up I felt a ton better. I would do it again in a heartbeat! I actually started out with ATN, then got the lightning strikes which were controlled with Lyrica, then a glycerine rhizotomy, but I had mostly ATN symptoms. Months later my ear hurts once in a while and I get small shocks, but they are more annoying than painful. I would say I am at 95% "cured"
Feel free to message me with any questions, I would be glad to help
Wendy "crashgirl"