Hi,
I had an MVD 3 years ago and have been pain free since. Recently however I have been experiencing the tingling and burning sensation on the same side as the TN. The full pain has not returned. I was wondering from those who have had more than one MVD, why did you have another and was the surgery more invasive then the first?
Thanks,
Shannon
Hi Shannon, I recently started having the triggers again also. I can’t say it is pain , more like spasms. It really scared me because I didn’t have anything for 3 years. I have been trying to find somebody that had the MVD and then the TN came back just to find out if it came back all at once or triggers like I am having. I think back at all the years I lived wth that pain and wonder how I ever made it through it. I would have the MVD over and over again if I had too. MY email is ■■■■■■■■■■■■■■■■■ if you want to chat. Take care. Rita
Rita,
There are several who have had more than one MVD. I had one but was never totally pain free but did fairly well for 14 mths. It has been 20 mths now and although I take more medicine than I did before the first MVD it is continuously getting worse but still not as bad as it was before my MVD. I hope to be able to wait until May/June to have another one. I see the surgeon in Feb. I am waiting to get it done during my son’s college break. But these last couple of days have not been good.
Liz
I was pain free for 2 years, the pains that came at first were just a little pain now and again, but my cheek was aching not bad at first then both got gradually worse. I don’t want another operation as I lost my hearing in the left ear, and my balance went. I do have back problems. This has meant I cannot walk far and I need the aid of a walking stick. I am 64 years old. I used to love walking. Now I swim but I am nowhere near as fast I just love being in the water. I would never advise anyone not to go for a MVD as I know it works, I was just unlucky. Margaret.
Hello, Shannon.
I am sorry that your experiencing these symptoms again after one seemingly successful MVD. I know that this must certainly be very frustrating for you.
I am wondering if prior to your MVD, your symptoms more resembled that of Type 1 TN, or Atypical Type 2 TN. A burning sensation is one of the hallmark symptoms of Type 2 or ATN, and in my case, the burning sensation is severe in both sides most every day. I am so hoping that MVD could help me. So, I am trying to find out from anyone who has come through with even a partially successful MVD whether or not they were experiencing the symptoms of Type 1 or Type 2 TN prior to their first MVD. I am trying my best to find out if it is a good idea for me, being Type 2 to pursue this at all.
I also apologize for asking you a question, as opposed to answering yours. But, if you have time, could you respond via my e-mail here, or on this thread?
Thank you in advance, and sincere wishes that you find relief.
Stef
Hi Shannon,
I have had two MVD's. My second one, unfortunately, was a failure. As for the surgical procedure, my neurosurgeon used the same surgical site, so my scar is exactly the same, he used the same craniotomoy hole, so there is no difference there, except he said he had to make it a little larger because of scar tissue.
I had complications in my first MVD, like the cerebrospinal fluid leak and an adverse reaction to morphine, so going into the second one, we had foresight of this. We took some extra precautions for unexpected events. I would still repeat the surgery if there was a chance for pain relief.
I think I was more at peace, if possible, the second time, because I knew what to expect and my surgeon was more skilled than before due to gaining experience in between the two surgeries.
I am now, however, not a surgical candidate because I also had complications in my second surgery. So, for me, medication therapy, CAM therapy and something that hasn't been invented yet is my best hope for success in beating this thing. Please don't hold back on your decision, though. It was one of the best things I ever did.
Sincerely,
Jackie
Shannon,
I have had two MVD's and they were about a year apart. I had my first one when I was 25 and the second one when I was 26. I ponder whether or not I would call them failures however I am certainly glad I went through both. The MVD they found an artery and a vein wrapped around my trigeminal nerve. I was having about 200 shocks a day at that point and had no quality of life on the medication and pain. I was shock and pain free for about 2 weeks following surgery and then it started again. I went back on medication again in an attempt to control but it still didn't help. I was having shocks every time I swallowed so I carried around a spit cup. I was also having trigeminal shocks and deep inner ear pain. I went back to see the surgeon who said a second MVD was my only option. I hesitated because I said I would never go through it again. I made the decision to proceed and get the second MVD. The surgeon re-looked at the trigeminal nerve and then went down my cranial line. He was amazed at what he found. I had arteries that braided themselves into my cranial line which was causing the pain. I was devastated because I went into the surgery thinking well I will have the surgery and it will go away. I have accepted that I will have it forever because of the amount of damage and there is only so much he could separate from my cranial nerves without causing damage to my nerves. I am thankful I had the second surgery. I wish you the best in your decision.
I have had two MVD’s. The first one didn’t work at all. The second one they cut some of the nerve and it was a success. I was pain free for 9 months and then the pain started slowly coming back. I was told the nerves can grow back. I will gladly go in for a third MVD if it will stop the pain! If I can find someone who will do it. At this point I will do anything to stop the pain!
I really feel for you and I hope someday they will come up with something to stop this terrible problem!
Jessy said:
Shannon,
I have had two MVD's and they were about a year apart. I had my first one when I was 25 and the second one when I was 26. I ponder whether or not I would call them failures however I am certainly glad I went through both. The MVD they found an artery and a vein wrapped around my trigeminal nerve. I was having about 200 shocks a day at that point and had no quality of life on the medication and pain. I was shock and pain free for about 2 weeks following surgery and then it started again. I went back on medication again in an attempt to control but it still didn't help. I was having shocks every time I swallowed so I carried around a spit cup. I was also having trigeminal shocks and deep inner ear pain. I went back to see the surgeon who said a second MVD was my only option. I hesitated because I said I would never go through it again. I made the decision to proceed and get the second MVD. The surgeon re-looked at the trigeminal nerve and then went down my cranial line. He was amazed at what he found. I had arteries that braided themselves into my cranial line which was causing the pain. I was devastated because I went into the surgery thinking well I will have the surgery and it will go away. I have accepted that I will have it forever because of the amount of damage and there is only so much he could separate from my cranial nerves without causing damage to my nerves. I am thankful I had the second surgery. I wish you the best in your decision.