Scott....bear in mind my surgery was 30 years ago at age of 33 but here is my experience. Surgery went well I had 2 veins wrapped around nerve and an artery pulsating on nerve. Upon waking up from surgery I was groggy but did not have much in way of nausea or discomfort. My major problem was that I could not raise my head without getting a severe headache. Turns out that after getting my spinal tap, before surgery, they sat me up too soon. Some people have to remain laying flat for 24 hrs after a spnal tap and I was one of them. After 2 days like this they did what they called a spinal block where they injected my own blood into my spine to clot the injection site. Worked like a charm within an hour headaches were gone. I left hospital 4 days after surgery with no TN pain and no real discomfort. When I left the hospital I was off all medications and didnt even need any pain killers. About 5 days later I noticed what look like a water blister at base of incision site. Turned out to be a spinal leak and I was readmitted to hospital for 4-5 days. They put a spinal tap in to relieve the fluid pressure and after 3-4 days I was released and fine. When I came home after surgery I was able to get around, sleep in my own bed and walk up and down stairs. Within 2-3 days I was taking a walk in development and 3 weeks after surgery I was ready to go back to work. All in all the recovery was nothing especially compaed to TN pain we endure. I have been totally pain free and symptom free since thank God. Here is hoping and praying that all goes great for you and Thursday is the beginning of a pain free life...Ed
Good day to you Proverbs 31 Mom: I had my MVD almost 5 years ago. I remember that as they were prepping me that the drugs were interesting, and that during the surgery it was the first good sleep I had in about 5 months. They woke me up in Post op, and I sang "Light a Rose" to the team from post op to the ICU, and that was my test to see that the MVD worked. It took about 5 6o 6 days before I could drive, and about 6 weeks to titrate off of the Lyrica. For about 3 months, my right ear had liquid behind the ear drum, and that took a while for it to drain out. I had been advised that when I wake up from the surgery that I would have a bad head ake. I did not. Was able to get the staples out in about 10 days. They also put artificial bone in the opening of the skull. That is nice for in northern climates, friends of mine that had other cranial surgery complained that the Titanium plate and screws are cold in the winter. So here I am almost 5 years now with out any TN. I still have a few numb spots that were trigger points, and that is OK with me.
We are pulling for you
Tom Johnson
Gladstone MI
Good morning! First of all, best of luck with your upcoming surgery. I had MVD in May 2011. I woke up pain free, having gone in with much pain, and I have been pain free since my surgery. It was a huge blessing. I came through my surgery with no complications other than minimal headaches while in the hospital. I did have some balance issues right after, but by the time I got home that had resolved. I had a wonderful hospital experience, I actually didn't mind being in there. As a stay-at-home mom at the time, the few days in the hospital were a welcome rest no matter how I had to get it! When I got home my wonderful neighbors and friends provided meals for my family for several weeks following my surgery so I was able to rest as much as possible. I had help at home with the other chores too. It's really important to get as much rest as possible, but to also take short walks when you can too. You will be so glad that you made the decision to go ahead with MVD, I know I am. I have my life back!
You have had a lot of response to your request for information. I hope it has eased any of your reservations. I had my mvd surgery following the results of my mri/mra showing a compression of the TN by the superior cerebellar artery on the right side. I researched the mvd surgical process and decided on using a neuro-surgeon in LA at Cedar Sinai Dr. Michael Alexander that uses a minimally invasive endoscope that is smaller than the normal endo scope that most surgeons are using to reach the site for the repair. Their were only a handful of surgeons using this instrument.
I flew to LA, saw him on Thursday July 11,2013, and had my surgery on Friday morning. My symptoms had been bad all summer but were beginning to go into remission at the time of the surgery (of course)! That had been the pattern for 6 years so I know that the pain would return again soon as that had been its pattern.
I was very nervous and had a lot of prep and talking with the surgeon, anesthesist, and various surgical nurses. They put in one vein line and waited till I was under to put in the catheter and arterial pick line in so that was good that I didn't have to experience that while awake. After the surgery in recovery I awoke to my beautiful wife and was chatty Kathy and felt awesome. I was wheeled to ICU and the very worst thing was having all the lines connected (trying to turn over and move etc with these lines attached - 2 vein drips, catheter, and arterial line).
The first nite was a little touch in that I was nauseated (but did not vomit), very very thirsty but it made me nauseated to drink water, I had a little fever, and my blood sugar elevated. They were using steroids to reduce the chances of swelling in the brain after surgery and that added to a bit of unsteady anxious feeling. I had no headache at all but I did feel a little unstable and did not want to move a lot because posistional change made my unstable feeling worse (a little dizzy). Really the worse thing was the catheter. It was taken out the next day much to my relief.
The next day I was transferred to a regular room. The arterial line was removed and I began to get my appetite back and move about in the room. Generally I felt pretty good, just a bit unsteady. No head pain and NO TN PAIN!! I was released on the next day and steadly improved actually walking around our motel and sitting out at the pool and reading etc. I ended up seeing the Dr 1 week post op or at least was suppose to but he was called into emergencies and could not see me, but I really did feel fine and felt like he would not have added too much to what I already knew. 10 days later I had the sutures removed (about 5 inch incision) which didn't hurt at all.
I have been pain free now for for nearly 4 months and I frankly don't feel like the symptoms will return. I would highly highly recommend this procedure based on the results I had. I know some people are not as fortunate with their results but for me it was a chance worth taking as I had tried everything out there with no help at all including all of the meds etc.
I wish you the best with your upcoming surgery and you will be on my heart and prayers as you move forward!!
If I can help in any other way with questions feel free to get ahold of me at any time!
Your friend in North Idaho! Jay Carpenter
Having decided to go for the MVD you decide to take the risk, unfortunately things do go wrong and for some the pain remains. I am one of the very lucky ones. I had my MVD 10 weeks ago and everything as been good since. I did have a small bleed during the operation so that added an extra few hours to the operation but other than that all went well. I spent 6 hours in surgery, 18 hours in ICU and 4 days on main ward. Must say it was the hardest but best decision I have ever made. I do not remember much about the time in ICU, other than being very sick due to morphine. Suffered from painful headaches for a few weeks, no continuous, but they have all gone. I have now returned back to work full time and have had the all clear to start driving again. I would highly recommend this treatment. Best wishes for a speedy recovery xx
I had my surgery in January on Wednesday morning. I remember that immediately upon waking I had no TN pain. However, because I don't tolerate opioids, I was very sick. I was in a lot of pain from the incision, and was extremely dizzy -- could not hold my head up. On Sunday morning I was finally able to get up. Took a shower and went home later that day. I had headaches and dizziness for several days afterwards. Also, I assume because of swelling, I couldn't hear out of my right ear. Hearing gradually returned over a few weeks. Took it easy and took six weeks off work. Still no TN pain 9 months later, so I have to say itwas definitely worth it.
I wish you the best of luck and sincerely hope that you are pain free very soon. I had MVD performed in Sept 2012. I had my first attack of TN in April of that year. I don’t have to explain the pain to you guys, but suffice it say, I literally thought that I was dying. My Dr. At UVA explained the procedure and said the 2 magic words, “pain free”. I spent 1 night in ICU and then 3more in a regular room. The ICU nurses were fantastic. The worse was a feeling of enormous pressure in my head, but once we got on top of the pain it was bearable. About 2 days in the pain returned and I had to be put back on the meds but I shouldn’t have been taken off to start with (so make sure that you ask about the meds that you are currently taking). I left the hospital in absolute depression. I was so looking forward to being pain free. The dr.could not explain why. They unwound the blood vessel from the nerve and managed to do so with no damage to either one. I went back on the full arsenal of medication and was out of work for 2 months. On Oct. 25, I had a very severe attack but, to date, it was last one. The very good people on this site told me that the nerve needed time to heal, but the Dr. Didn’t think that was the case ( just goes to show that they are not the know all, end all). I have been pain free since and med free since Dec of last year. There is not a day that goes by that I don’t still think about the pain and fear it’s return. But I am living my life the way I had it planned pre TN. I will pray that you have the same result. Best of luck to you!
I don't remember much after the surgery because I was so drugged up. I did have a pretty significant headache and some nausea for a few days, but my TN pain was gone entirely. Meds took care of the other issues which were minor compared to my prior TN pain. After going home, I was very dizzy and tired and needed a lot of help from my husband just to do everyday things. Plan to rest a lot and don't try to recuperate too soon. It will only cause you to take a step backwards in your recovery. I had some trouble with nausea for quite awhile so I ate very light meals after going home. The worst problem I had was in finding a pillow that was comfortable to sleep on with the incision. I bought several different ones but never could find one that fit comfortably.
I had my surgery about 9 months ago and still have some numbness in the ear and head on the side of the incision, but NO TN PAIN. Having MVD surgery was the best decision I ever made and wish I had done it sooner. Good luck with your surgery. I hope you have a wonderful outcome!
brownkat
I had MVD December 2011. The surgery was successful, but post op wasn't much fun. I had very high blood pressure, so they kept me in for a couple of extra days, and the headaches were pretty excruciating. I had some face pain for a few months after surgery, and then nothing. Six months later, I got a completely different kind of pain - instead of shocks, this lasted for minutes, but was lower level. My neurologist says it's likely Type II and I may have had it at the sam time I had Type I, but didn't know it. At any rate, I'd do the surgery again - it was very effective on the Type I, and the Type II responds well to Tegretol.
I had no real problems after my MVD last December. I did not get nauseous but felt very weak of course, had a catheter already inserted which is a little annoying. I took the pain medication but really felt little pain just a little stiffness around the incision. My biggest problem was what I went in with and that was a sore ankle which made it harder for me to walk around but I did it anyway. Also I have trouble with headaches and that bothered me more than the incision or surgery pain. I wish I had brought my regular headache medicine with me - Butal-Aspirin-Caffeine. Otherwise all went fine. Don't worry about it, you will do well!
i had the mvd on july 30th this year. 4 hour surgery, woke in icu. i had never had surgery so it was a new experience. the diladed made me hallucinate and my sister suggested a pill form of med, so i got oxy and that helped. the physical therapist came in the first day and wanted me to walk, march in place and something else, that made me throw up ! i asked him not to come back. like someone else said, stool softeners! wow that was a horrible part of the whole thing, all the drugs had turned off the system and i could not go. i was nauseated every time they gave me meds in the iv, but they gave me something else to combat that. i did get a csf leak that extended the recovery time, but in the end...NO TN PAIN AND NO DRUGS! for me it was worth every bit. good luck
Hi,
I had my surgery over 3 years ago and it was worth it! I got my life back, 99.9% pain free. Every now and then, a light burn or a single stab, but I am outdoors, in air conditioning, styling my hair again, riding the convertible with the top down and smiling all the while. I had 3 compression points where a blood vessel was rubbing on the trigeminal nerve. There are teflon pads now keeping things under control. I was glad to hear I was't crazy, that there was definitely a problem.
So, here is my story, which may be totally different from the experience you will have. I was nervous but I wanted my life back. I was under general sedation so my first memory was being groggy and had nausea after the surgery. I was tossing my cookies largely due to dizziness. I was well medicated for pain and received dramamine for nausea once I woke up. I felt like crap. There were small bandages on my forehead from a halo support for surgery, where it was anchored in my forehead. I still have small scars, faint though. I also had a 5 inch metal "caterpillar" behind my ear running down the hairline of my surgical side.They had stapled the surgical cut they made. I have a circular lacey plate the size of a silver dollar that was placed where the bone was removed for access. I had one good side I could rest on that didn't make me so dizzy. I was in the hospital for 4 days. I got out of bed the first day, while on a drip, to go to the washroom. It was hard but I wasn't getting those stabbing pains. Everyday was bit better than the day before. Once I was home, I found I didn't need as much pain medicine but I wore out easily and rested for another 1-2 weeks. My metal caterpillar of staples was removed around the 2 week mark. That wasn't so bad, only one staple wanted to stay in. There was no lifting at all for a few weeks. I did notice that the first time I heard music, it sounded like a child got into the pots and pans. None of it sounded right and it even was annoying. I knew that hearing may be affected by the surgery and if that was my sacrifice to be better, it was worth it. However, after a couple of weeks, it righted itself as inflammation went away. As for the pain, it takes time for nerves to repair themselves and it was about 4 months of lesser TN symptoms than I had before the surgery. One day, I realized that I had no more pain and it has been that way for 3 years for me now. Today, I still have a trough along my hairline where my skull is dented in about 4 inches long. It doesn't hurt. I had been on crazy medicine for a year prior to surgery, so stoned that I couldn't walk or drive. I was weaned off those and haven't looked back. I like having my sanity and real awareness. Best of luck to you and I hope your life will change as dramatically as mine, for the better!
I had an MVD 3 years ago. The problems I had were afterwards. I had bad headaches and water behind my ear from the irrigation during surgery. I have severe numbness and pressure from a Gamma Knife I had earlier but none from the mvd. Best of luck, I am still pain free! Mark
Hi,
I had MVD November 14th almost two years ago. When I first awoke in the recovery room, the first thing I did was touch my nose, mouth, and eyebrow, and was thrilled to have no pain. Anything after that is tolerable.
I had a big bubble on the back of my head on the side of the incision at the incision, and it felt like a balloon. It went down over the next month, but the incision leaked for 3 months. That was because the dura had not healed quickly. I had to take "diamox" which is a strong antihypertensive to lower my pressure and eventually after 4 months, it sealed itself. I have had little problems since. The side effects for the diamox are not pleasant because your feet tingle at various times during the day, but its nothing compared to TGN.
One sequelae, the screws that were used to attach the plate that covers the craniotomy, now that it is fully integrated into my skull will have to be removed...which is unusual. They have started coming out and they are pushing on my scalp uncomfortably. But that's just a small office procedure at a plastic surgeon.
Where are you having your MVD? I had mine with Dr. Scheivik at Cedar's Sinai in LA.
Write and tell me how you do. I care.
Regards, Judi
Wow, I’m so glad you asked… This is the biggest posting of hits on the positive side that I’ve ever seen!
I’m going to capture this link for those going forward after you…
Mine is good. Flew from MO to MI to get theeee best MVD surgeon! Dr. Ken Casey.
He often is the guy you go too if it doesn’t go we’ll enough the first time. But I’m sure yours will be fine like mine the first time.
I had TN curse in oct. 2010, Went to research around here and exactly one year later, had MVD. one night in ICU and one night in regular room…big headache and some nausea…
We drove home a couple days later… I laid in bed for three weeks. I did not want anything to go bad…my idea…
Every time I asked surgeon… WHEN CAN I… His answer was always, when YOU feel good to do it!
Let us know how it comes out!
This is year two…I finally got to no meds, no lidocaine on my face mostly … I have zero to two percent comes and goes…I call it my remission…I’ll take it for however long it lets me!
I had my MVD surgery in 2011. When I woke up, I felt that stabbing pain in my face. I was terrified and I just keep thinking omg I'm back where I started. The nurses gave me some pain mediation and pain was gone. I did have headaches for about a week. Some hearing loss for a period of time. I was off of work for 3 weeks. Return full time and Thanked God everyday. The cold weather usually sets off some trigger points. Every year it's a different pain. No meds, no numbness and no pain, I only take the medicine as needed. Just be positive about the whole thing. God will bring you through it.
I had my MVD over 5 years ago, Have been pain free ever since. My experience is much like others that I have read about. I went back to work after 3 weeks. Didn't feel 100% for about 6 months.
Wishing you the best of luck with your MVD. You have heard the good and not so good as well as the pros & cons. And yes, everyone is different in the recovery process. The best advise - take it easy and rest when you get released to go home.
One word of advice girl to girl -- make sure you have something to tie your hair up with! LOL When I got to the ICU, I wanted to get my hair off my neck. My husband had headed home already and had my bag with him...in that bag was my hair clip. I asked the nurse in the ICU for something to tie my hair up with and she snapped at me and said "Do I look like a hair dresser to you?". The rest of her shift was miserable......she moved my hair up on the pillow and it would not stay and Lord help me when I asked her to move it again when she returned. I was so happy when her 12 hour shift was over. She would not even bring me a rubber band when I asked for one.......
Sadly enough, I am having issues 14 months out from my MVD (thanks to a surgeon that washed his hands of me at the 8 week follow up) but am now on the right track with a great team of physicians and with the information I have gathered from the group of individuals within this support group I am sure that I will be back to a normal life in no time at all!
God bless and let us know how you do.
Best of luck to you with your forthcoming MVD. I had two of them. The first in 1998, followed by 9 blissful pain-free years. Then it came back with a vengence and I had a repeat MVD in 2006. Unfortunately for me, I was only pain-free for about 9 months. Then I had a stereotactic surgical procedure (like Gamma knife), but it did nothing except make my forehead numb and scramble some of my memories. Both MVD procedures went well and I woke up free from any TN pain, although I did have incisional pain, nausea & vomiting and severe headache each time. But those things were controlled with different medications. After the first procedure, I was in an ICU and my care was AWESOME and my recovery went well. For the second procedure (different hospital & different Dr), I went to the recovery room for a few hours and then right to a regular room and my care was AWFUL. I was basically "on my own" and had a difficult time getting help when I needed it. I had to struggle by myself to get up, wait forever to get pain medication, etc. Perhaps that is why my successful procedure didn't last as long as the first time. I would highly recommend that you are in an ICU after your surgery! Of course, that depends on the hospital & Dr. But I would definitely find out what the course of events will be for you. If you will be going to recovery & then a regular room, I strongly advise hiring a private duty nurse or having a family member with you 24/7. Best of luck to you and wishing you a future free from TN pain.
Hi,
Well, right after my MVD surgery, I started opening my eyes when I was being transferred onto the bed in ICU.
My head felt like it was going to explode with pain. I couldn't open my eyes the entire day, because if I did, I saw the room spinning and everybody around me as well, they also seem triple and I felt nauseous.
I had them put a towel over my eyes, because any light would bother me. I couldn't move my head at all due to all the symptoms above. But by the next morning I was able to open my eyes and every time I felt pain, I told the nurse and she would give me something for it. They gave me salt pills for the nausea because due to the medication my sodium levels were very low. I also stopped taking the medication, "trileptal" rightaway.
By noon the second day, I was able to eat something, and a little something at dinner time. I didn't have much appetite. I went home the following day and it was uphill from there! Praise God.
When I got home, I was tired and didn't have much appetite, I lost weight, which I needed to anyways, my stomach hurt a little also. The surgeon gave me hydrocodin for pain, which I only took the first couple of days, but I didn't like taking it because it made me have weird dreams, so my husband got me extra strength Tylenol and I took it every four hours the first week and then twice a day the following week, and then nothing.
It's been 1 year and two months since.
I believe it's worth going through with MVD, and would do it again if I have to.