Hello all! I had MVD in Sept to deal with pain on the right side of my face and it’s been great aside from some numbness that is lingering. HOWEVER, I now have, what feels exactly like TN pain, on the left side of my face. It showed up about a month after the surgery.
Has anyone heard of this happening? MVD for one side resulting in pain on the other? I’m hoping it’s just my nervous system doing its thing while I continue to heal and that it will fade but I am rather concerned to have just swapped the pain from one side of my face to the other…ugh
So sorry to hear that Todd. I had a successful MVD in 2007 on my left side, leaving slight facial numbness that has worn off over time. Unfortunately, about 1 1/2 years later I had it show up on the right. Bilateral TN type 1 pain, again. We are a rare breed apparently. I don’t believe anything done on the left caused the right, but there is so much unknown. Anyway, I had an unsuccessful MVD on my right in 2015, and I take Carbamazepine, and sometimes Topomax, to keep it at bay.
Hello Todd - I am so very sorry to hear about your pain. I had a similar thing happen after my first MVD, and was diagnosed bilateral TN. I could really, really NOT believe it at first! I had a second MVD two years after my first (right side then left side.) The right side surgery was better than the left, but both surgeries helped tremendously. I was lucky to have an excellent surgeon, and he did both of them. Not too many of us who are bilateral I am guessing (?) I would advise that you see your neuro as soon as you are able and see if you can get some help. I am 8 years out from my first MVD, and 6 years out from the other side MVD. I am ok some days, other days I have to take the meds to get through. I will be thinking of you and sending you strength!
This MVD is nonsense!!! If you are lucky and they disrupt the nerve you will have pain relief, I had 3 of them and very little relief for a short period of time. In fact in studies they found that most people have a blood vessel touching or pushing the TN nerve and they are asymptomatic. The cause is much more deep and surgeon are praying on people who are desperate for relief with this “snake oil” treatment.
Parisathina…MVD is not nonsense. It does work though not 100%. I had an artery and 2 veins on my nerve. Had mvd surgery in 1984 and have been 100% pain free since. I know it doesnt always work that day but it’s not nonsense. I owe my life to the Dr and his skill with mvd surgery
I had MVD and 2 glycerol injections and gamma knife and unfortunately nothing worked and finally eight years ago I was put on verapamil and topamax if needed but I never need it so ask your doctor about for verapamil 240 mg ER. I have been pain free for 8 years.I have been on all the medications that have been mentioned in all these messages and feeds but nothing worked so please ask your doctor about verapamil.
MVD might not work for everyone but it was a miracle procedure for me. I had the 1 st that lasted 3 1/2 years & found a neurosurgeon that specialized in MVD ‘s & 2 days ago was my 8 year anniversary. I highly recommend considering MVD & finding a real specialist. When the second dr started the procedure he”pondered” stopping because of so much scar tissue but continued and I am so thankful he did!
I also had a vein & artery on the nerve when the first MVD was done.
You had you MVD in 1984 and have been pain free all these years? Just wanted to re-confirm that the figures are correct.
I had my MVD in 2013 and have been pain free since then. I have written two posts about my experience - sharing them just in case it will benefit others:
Sorry didnt see your post earlier. Yes those dates are true. I have been truly blessed and MVD and my Dr who performed it saved my life. Hoping and praying you stay pain free.
Yes this happened to me also. When you had mvd do the surgeon make an incision 6 to 7 inches long. I had 48 staples. No compassion from the surgeon or his staff. I still have numbness and pain. I’m so sad for anyone who has had this surgery more than once. I would not do it again. It’s just not worth for me. My pain was all on the left side before the surgery and now has moved to the right side. So for me in my experience, mvd did not work.