Has anyone had this surgery? Any thoughts about it?
Beverly, many people here have had MVD surgery, with varying results. You'll tend to see more negative outcomes here than in a general population of patients, because the site is most often used by people who are still dealing with severe face pain or treatment side effects. I suggest that you run the term "Microvascular" in the search window at the top right, as well as reading the surgical treatment section of our "Face Pain Info" tab on the menu.
I'm planning to have it in the near future. I've already met with one surgeon, but he is too stuck on the idea of rhizotomy for me. I meet with a 2nd surgeon on Jan. 3rd. I'm hoping he has lots of experience with this surgery. I hope you had a good outcome with yours.
I haven't gotten it done yet. I'm still up in the air about it..but I have to do something soon. Good luck with your new surgeon. As my mother would say.. when you meet him go with your gut if something doesn't feel right then move on. I also have a little mantra I tell myself when having an attack "Science moves faster and faster each day" Lets just hope it hurries it's ass up! Oh and I tend to throw some obscenities in with it. LOL Good Luck again!
LisaG said:
I'm planning to have it in the near future. I've already met with one surgeon, but he is too stuck on the idea of rhizotomy for me. I meet with a 2nd surgeon on Jan. 3rd. I'm hoping he has lots of experience with this surgery. I hope you had a good outcome with yours.
I could not tolerate the meds making me un-intelligent
I have only had TN1 since oct 2010
so i spent months on here learning and researching - after 3 emails back and forth
i chose to fly to michigan to have mvd with dr ken casey ..... he has done thousands and studied under the creator of mvd
it has been 8 weeks with no meds or pain..... even knowing i might have to have a second mvd ---- not likely but very possible........... i kinow i made the right choice for me. sorry about the typing--- cat in my lap
kimberly
I had gamma done in May 2010. That worked for 8 months. I had MVD done in May of 2011. I have been off meds since August. It is fantastic. I can say; make sure your surgeon has done this surgery multiple times. Make sure they are willing to look a little deeper. (Mine found two compressions and a tumor that did not show on MRI) and make sure those caring for you after understand that any kind of brain surgery is going to change you. Everyone I know has told me I have changed. The biggest change I have noticed is I am much more relaxed since I no longer antisipate the next wave of pain. I did lose feeling on the right side of my face. I lost much of my taste buds too. All worth it. Off meds and no pain has improved my life 100%.
Please, meet with many and go with your GUT - they will be OPERATING on your BRAIN.
I wear pads, Beverly, and I've used that line before:) bob
PS: Tortoise wins.
hahaha un-intelligent - I SOOOO know what you mean by this statement!!!
I have had TN since August 2010 - remission of approx 8 months and it returned in September this year :(
I am considering MVD myself, as I hate the fact that my personality has changed so much since being on these meds. My kids notice it and I am embarrassed to get into conversation as I oftenhave difficulty recalling commonly known words.
TN effects more than the person going through it, the whole family suffer!
Kc Dancer Kc said:
I could not tolerate the meds making me un-intelligent
I have only had TN1 since oct 2010
so i spent months on here learning and researching - after 3 emails back and forth
i chose to fly to michigan to have mvd with dr ken casey ..... he has done thousands and studied under the creator of mvd
it has been 8 weeks with no meds or pain..... even knowing i might have to have a second mvd ---- not likely but very possible........... i kinow i made the right choice for me. sorry about the typing--- cat in my lap
kimberly
I had MVD surgery two years ago on the 6th of January. I am 100% pain free. Because I dealt with TN for close to 20 years my Dr. did not expect better than 80% recovery of normal nerve function. I am glad to say that I have about 93 to 94% of full nerve function back now, and still seeing bits of yet.
If TN ever returns to me, I will do the MVD again in a heart beat! (Note that the drugs for the surgery allowed me the best sleep I had for almost 3 years!) If you can see if the surgeon will use artificial bone replacement. I have a friend who has the titatanum plate, it is cold in the Michigan winters. As some of the others have pointed out, it is best to have a surgeon that does this 3 to 4 times a week do this procedure.
Recovery is different for each person that under goes this. I was back to work in 5 weeks. It took about 4 to 5 months for some of the fluid that built up in my right middle ear to fully drain. (Is sounds kinda like you are under water in a pool or in a gold fish bowl). So it is good to give your self some recovery time.
Best wishes and a pain free year to you.
Tom Johnson
UP of Michigan
I’ve had it, and I agree with RED. There will be varying results. I had mine about 8 or 9 years ago. The recovery (for me at least) was BRUTAL. For a few years, I felt better, not great, but better. My tics weren’t nearly as frequent or as intense. BUT, the time has come where they are now worse than they were before. I dont think thats uncommon though. I dont think I would put myself through the surgery again, but nothing worse than a big scar and some screws in my head happened. (besides massive swelling, but expect that). I think its a goood option for some people and def. something to consider… 
WOW...Thanks for all the reply's! Thank you for putting yourself out there and telling me your own personal stories...you all are amazing! I think I am going to just go for it. I dont think the surgery really scares me. I think the fear I have is it not working. I was never diagnosed correctly (lots of hospital visits w/no insurance ouch!) when it first started 2003 TN1 and after a few years it went away and I thought I was crazy. Went two years pain free and BAM came back this time TN2 (a little more then a year ago) I give those of you with TN1 credit for first pushing for a correct diagnoses. (something I wish I would have done) second for being your brave selves for doing the surgery! Tom Johnson thanks for giving me hope !(dont think I could last 20 years and nice to know that it worked after so much time) I just want to be able to hold a conversation with out forgetting words, names..and what ever else I can never remember. So thank you ALL! A little extra shout out to "Red" Thank you sir. It's nice to know your around ;)
Glad to help where I can, Beverly. Most of what I try to do here is to find authoritative information for people who are trying to make treatment choices. And to add balance to discussions where we might need to remind ourselves that the membership of a site like this one tends toward people who haven't had good results. Both MVD and medication success rates and persistence of pain free states are much higher in the general population than among folks who seek out a patient support site. And for all of the participants in the thread, please realize this is not a slam or invalidation on your personal experience. Merely an encouragement toward prudent optimism for newbies to these pain disorders.
Go in Peace and Power
Red
I must counter another poster's comment about a big scar and screws in your head.
The scar is behind your ear and hair grows back around it
While you are on the table they keep your head stable by putting in a sort of vice on your head - you wouldnt want to have flinched if somebody is working on your brain!
They dont put screws "in" your head, but you do get a small titanium plate for a souvenier for life : )
I'm sorry the other poster had brutal recovery, but that is not the same for all.
Keep posting and researching, you can never know enough! You are very brave - I stayed in bed for 2 weeks terrified of all the things that could go wrong. I came on these boards all hours, and got support and comfort!
Well i think the scar is quite large, and your hair will grow back, and it grows back quickly. i got a few screws and a lil plate it my head, doesnt bug me it all. i think if you are a candidate for it, its definitely worth looking in to. yes, my recovery was brutal, but def. not the end of the world, and def not something any of us couldnt handle considering the pain we have all been going though. If you decide to do this, you’ll do great. Everyone does not react the same like ‘dancer’ said … it will def be something you will be able to handle. I am on of those people that does like to know other peoples experiences good AND bad so I can prepare for the worst and expect the best. Lots of support here and what ever you decide to do, we’ll all support you
Beverly,
Diagnosed TN1, after the life threatening side effects from medication, (Carbatrol) I was "haloed" for Radiosurgery until the last minutes-that-seemed-like-hours, when whatever number MRI/CAT was read; and only THEN, the neurosurgeons decided to do an MVD.
Typical/Atypical/Type I/Type II, the tortoise still wins, just because...bob
I think the scar is the coolest thing about having the surgery! LOL...and the way I see it is if they are going to shave one side of my head then I'm going to help by shaving the other..( If it's the only time I'll get a chance to sport a purple mohawk in my life..I'll take it!) I see the neuro on the 24th and you all have given me some great info that I can grill him on..I know that he's performed about 100 but I had never thought to ask him what his success rate was on finding the "offending vein". I found out that this is VERY important. I got that tip from buying that book "Striking back" It has A LOT of info but a tad outdated. So between you all and the book I feel a lot more in control now and some times in dealing with Dr.'s that's half the battle.
Bob..I gotta ask how was your outcome? Out here in AZ you'd be hard pressed to find a tortoise...a hare on the other hand..a dime a dozen. ;)
BOBBIE! Your taste buds!! I am so happy that it's worth it to you...not sure I could deal with less taste buds!..What can I tell ya... I love myself some food ;)
Bobbie said:
I had gamma done in May 2010. That worked for 8 months. I had MVD done in May of 2011. I have been off meds since August. It is fantastic. I can say; make sure your surgeon has done this surgery multiple times. Make sure they are willing to look a little deeper. (Mine found two compressions and a tumor that did not show on MRI) and make sure those caring for you after understand that any kind of brain surgery is going to change you. Everyone I know has told me I have changed. The biggest change I have noticed is I am much more relaxed since I no longer antisipate the next wave of pain. I did lose feeling on the right side of my face. I lost much of my taste buds too. All worth it. Off meds and no pain has improved my life 100%.
Beverly,
Carbatrol was the greatest relief, as I tolerated the burns (toxic epidermal necrolysis) for several weeks, until the Director of Nursing at the facility I worked at noticed and sent me to the emergency room.
The subsequent six months of Cyclosporine and at home IV steroids (no other medications) weren't so great.
The MVD was the greatest relief for the 2 weeks to the day that it worked. I did return to my employ for a short period, though my timeline is sketchy at best.
The first radiosurgery was the greatest relief for the 2 weeks to the day that it worked.
The second radiosurgery, well, my Neurologist says that I have experienced a "particularly refractory course" in treatments for right-sided TN1.
NH has snowshoe hares, cottontail rabbits, and 7 types of "turtles";)
Your friend, bob
Bob..."particularly refractory course" ? That's a new one on me...What are you doing now? (If you don't mind my asking?)
7 types? Looks like the "turtles" have it! ;)
Don't go shaving yet....if you still have long hair - nobody will see it! it's only about 3-4 inches long down the back of your ear and only about a path of 1/2 to one inch wide!!!! LOL
Beverly said:
I think the scar is the coolest thing about having the surgery! LOL...and the way I see it is if they are going to shave one side of my head then I'm going to help by shaving the other..( If it's the only time I'll get a chance to sport a purple mohawk in my life..I'll take it!) I see the neuro on the 24th and you all have given me some great info that I can grill him on..I know that he's performed about 100 but I had never thought to ask him what his success rate was on finding the "offending vein". I found out that this is VERY important. I got that tip from buying that book "Striking back" It has A LOT of info but a tad outdated. So between you all and the book I feel a lot more in control now and some times in dealing with Dr.'s that's half the battle.
Bob..I gotta ask how was your outcome? Out here in AZ you'd be hard pressed to find a tortoise...a hare on the other hand..a dime a dozen. ;)