Hi,
I am seriously considering having MVD surgery. I know everyone has their own opinions on MVD and that it might not work for everyone. I was just curious as to how many people here are FOR and and how many are AGAINST the surgery.
Hi! The way I see it, there can’t be for and against teams. There are too many individual situations. In my opinion, MVD is one of the only cures. Everything else is just a pain bandaid. I have spent almost 5 years dealing with the fog of meds, with breakthrough pain. I have just made the decision to have surgery. Some people go straight to surgery, others spend 20 years with medication. Do what’s right for you, be your own advocate, and talk to different doctors who are aware if your specific situation. The face pain “bible”, " Striking back" gave me alot of insight. Good luck!
You need to research and decide for yourself but I am very much in favor of fixing the root cause. MVD can do this and has for many of us.Good luck
I agree with the others-all cases are different & we all have to make our own decisions after researching options. I had my MVD for type 1 done @ Johns Hopkins & it went flawlessly. The book “Strking Back” was very informative. The information I found on this site was invaluable in helping me make my decision. I love this group!
I had one and it was the best thing for me. I can't tell you if it would be for you or not. Everyone has to research and decide for themselves.
Has a neurosurgeon reccomended an MVD?
Hi Sara,
I did a lot of research asked a lot of questions of fellow members and the bottom line for me was I wanted to fix the issue and be done with it. MVD was successful and no more meds. I have my life back! Make sure you talk with your Drs, loved ones and us, get all your questions answered before making this big decision.
Good luck,
Mary
After years of debilitating pain and non-stop meds, I felt it was the right choice for me. My neurologist wasn’t 100% sold and neither was my family. But after speaking to my pain management doctor, a neurosurgeon he told me I should see, my husband and doing research (this site helped a lot), I decided MVD was the way to go for me. I knew what could go right and what could go wrong and I thought it was worth a try. I felt I couldn’t take it anymore and that it was time for something drastic. I had mine done a month ago. I had some small post-op issues that were not fun at all, but it was the right desicion for me. I have no TN pain so far.
Great Question Sara,
I am in the same boat as you I would want to know how many are for and against MVD when they have type2?
Thanks everyone! I am going to meet my new neurosurgeon on Tuesday to hopefully schedule my surgery!!!
For but only a trained medical specialist should advise you per your specific case
I had the surgery in July and have been pain free ever since. I did have numbness for several months, but I am completely back to normal now. What a welcome return to my normal life it has been.
I agree there can't be two bands of for and against, but there are things you should consider. I did the medicine route for eight years, and the pain was tortuous despite the meds, and you should be aware that prolonged pain at that high level and continuous medication often at very high doses changes your life, changes YOU, often changes your relationships, changes just about everything about you and your life - and your dosage of the meds over a long period of time often tend to need to be increased, which can be dangerous to your liver and your life. There are often side effects to the medication which you will have to take all the time, brain fog and physical exhaustion and as a result of physical inactivity, often weight gain - to name just a few.
I then had a very successful MVD, 4 days in hospital, was totally pain free and off all meds for 7 years. Most people who have a successful MVD are very excited to get their lives back, and say they just wish they had done it sooner instead of suffering on the meds. For some, the pain free period after MVD can last 20 years, for others five, some even less...there is no guarantee - mine was 7 years. And then you have to consider the risks of surgery, which can also be enormous - and there is plenty of info here and elsewhere on the net about that.
I am currently booked to have my second MVD in March, simply because I can't face what I KNOW life is like with the pain and meds, as opposed to a CHANCE to have some more pain-free, med-free years through having MVD. I know things could go wrong, but for me, it's a chance I am willing to take. Others think differently, so it comes down to personal choice in the end. Best of luck.
You know Sara, I wish I could say that I believe that having the MVD surgery is the answer to this disorder, but I had the surgery twice, why did it only work for awhile? That is the question I keep asking myself every day when I experience another jolt of excuriating pain. I don't believe this is a cure all for this condition. I don't want to squash anyone's hope, but you wanted to hear both sides. I know it seems to have been a god-send for some and I hope it stays that way, but I don't have any faith in it, if I did I would try for a third time.. The more that nerve is handled the more agitated it becomes maybe that teflon rubbed the nerve too much, or another vessel grew around the nerve in time who knows. It did work the second time for about 4 years for me. The saddest day of my life was when the pain came back thats all I know, whatever you decide I wish you the best.
Sara,
Here’s my take, there is no known cause for TN, no known cure either as a result.
That still nags at my thinking because I’m signed up for MVD.
There have been studies that show that MVD has been very successful for many people. Based on the theory that veins or arteries are compressing the 5th cranial nerve causing or contributing to our TN pain.
Here’s the thing, FOR ME…I had never even considered anything but medication ( as that worked for me) until this year when it stopped working…
I never wanted to make an uninformed decision while I was in horrid pain desperate for relief.
So this summer I decided to start actively researching ALL the options , and ALL the research I could find online. In case my TN continued to be resistant to meds.
I decided for myself, that I definately did not want to do any procedure that would further damage my nerve. So that left me with MVD as I had already tried acupuncture and some other natural/ homeopathic things to no avail. ( I’m currently looking into cervical chiro, while I wait for my date for MVD )
I met with a local neurosurgeon ( like ihold, my neuro didn’t think MVD was an option as I have type 1 and type 2 also bilateral he referred me anyways as he is supportive) my husband and I were impressed and thankful that he offered to do it despite type 2 being not as successful . My 2nd opinion was with a NS who specializes in TN and studied with Janetta. He also has agreed to do my MVD and I chose him due to his experience.
It is such a PERSONAL choice, as long as we do the research, and understand there are NO guarantees, eyes wide open into our choice .
Hope is so important, if my meds were still working, I would never consider MVD, but the meds I’m on are NOT working, I can’t drive, my ability to function “normally” is greatly affected by my pain and by my meds, I’m healthy and young (40) I feel I need to try.
I know there are no guarantees, but I feel I have made the best choice for ME.
As I mentioned I’m still going to try cervical chiro in hopes that it may work for me while I wait for my surgery date.
I wish you luck as you gather info and meet with neurosurgeons, make sure you get a few opinions.
((hugs)) Mimi xx
I think Donna has a very, very, valid point, thank you so much Donna for putting it so clearly. This question has been formulating on the edge of my mind for ages but I could never quite grasp it and put it together with so much clarity. It's like a light bulb going off in my head! WHY do the first MVDs seem to succeed more often than not, and then appear to 'fail' later down the line...or, having seemingly 'fixed' the problem, why is the T nerve AGAIN becoming trapped...what IS going wrong? Does anybody know? Do the surgeons know? This is a question for our esteemed moderators to explore, methinks? And then, looking at the big picture, having had one's head opened up two or even three times..what next? How many times can they safely open us up? Are we to THEN be doomed to an old age (assuming we live that long) that is wracked by pain that NOTHING can help because they can't open us up again? Sorry to be so blunt here. Anybody care to take a crack at shedding some light?
I cant answer for you or anyone else on here, each person and thier situation is different. I can say that I chose an MVD and I had almost all ATN pain and it has been the best move I made. I wont lie, I have an occasional pain in a tooth or ear, but it is more annoying than anything and doesnt happen often. I am off all the meds and feel good. I have had some complications after surgery due to my being allergic to almost every drug out there, but I would do it again in a heartbeat.
My best advise is research, research, research and when you are done researching, research again. If you go to a doctor or neurosurgeon and they make it sound to good to be true, it probably is , or if they dont listen or acknowlege the pain you are in, move on. It takes time to get the right person to help as well.
I also found that running ideas by Red, our moderator extroardaniare helped as well for some feedback and decision making, which I thank him for.
I really had no choice but to go the MVD route thought too, I am allergic to most drugs, and I drive for a living as an insurance adjuster. If i never wanted to work again, then I would have taken the drugs, but I cant sit around for the rest of my life either, and I hated the way I was on the meds or the nasty side effects and allergic reactions I had to them, so for me the MVD was really my only option.
Wendy
depends on the symptoms, but for me it was a complete success. It has been over two years.