1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

9 months pain free

Posted , 10 users are following.

colin04561
colin04561

Today marks 9 months pain free. I had my MVD on the 15th of June 2016 and this is the longest I have gone in 5 years pain free. I felt like sharing with everyone because it is a wonderful thing to look forward to for those of you contemplating MVD.

3 likes, 47 replies

47 Replies

Next
  • clint71
    clint71 colin04561

    Posted

    Congratulations! It'll be 7 months for me in 2 days. My only regret is not having the surgery several years ago.

    • colin04561
      colin04561 clint71

      Posted

      Same here. I wish I had done it right after the glycerine failed.
    • clint71
      clint71 colin04561

      Posted

      On the plus side, whenever I feel "regular" pain, it's easy to shrug it off like nothing!

  • amanda60033
    amanda60033 colin04561

    Posted

    That is so great, I'm very happy for you and the relief. I had the surgery a year ago and never got relief so I was wondering if you had the same traditional atypical TN symptoms??? Pain all the time, except at night, only on one side, etc. Thank you.

    • colin04561
      colin04561 amanda60033

      Posted

      Mine was right side only. I had 2 arteries sitting on the nerve, however, which added to the frequency and length of pain.
    • amanda60033
      amanda60033 colin04561

      Posted

       I had the exact thing, two blood vessels on and looped around the nerve, but mine was left side only.  What about your symptoms before the surgery?  did you have the pain all the time?  I'm just always so interested in other people's stories, especially success stories.  Always trying to find anwers...

    • colin04561
      colin04561 amanda60033

      Posted

      Mine was right side. The pain focused mainly in my jaw hinge and at times near the front of my lower jaw. I also had spiderweb all over the side of my face all the time and sometimes some burning near my nose. My pain waxed and waned but was present most of the time, waking me up frequently near the time I had my MVD.
  • PerkinsPea
    PerkinsPea colin04561

    Posted

    Thanks for sharing. I'm on the path towards mvd or glycerol injection so positive stories are good to hear. All the best x

  • frances87157
    frances87157 colin04561

    Posted

    So happy for you :-) I'm one year today since my MVD however, one month ago I've had the most awful flare up which has left me with a new lady sided facial numbness, I've had to start my tegratol again, I'm feeling a little disappointed today, I really want to be flying my MVD flag, just feeling a little frightened again.

    I hope you continue to keep well Colin x

  • joanne49021
    joanne49021 colin04561

    Posted

    Colin.....that is totally awesome! Are you off your meds too or still have to take some? 🎉🎈

    • colin04561
      colin04561 joanne49021

      Posted

      No more meds for me. I was off of them within a week of the surgery. That was a really nice thing. I have my balance and senses back!
    • joanne49021
      joanne49021 colin04561

      Posted

      That is so wonderful. Because of you and another group I'm in I've decided MVD is the way to go. Prayers to you that you will never experience the pain again. Please stay with us and keep us informed. Are you the American or U.K. Colin?

    • colin04561
      colin04561 joanne49021

      Posted

      I'm the American Colin. But I do so love my UK counterpart. Nice fella.

    • joanne49021
      joanne49021 colin04561

      Posted

      I know you do and think that is awesome too. Because of our rare, unusual condition when we are able to connect with someone else who feels our pain and understands it, we form a bond. We need those bonds desperately.

      What state are you located in? I'm in SC and believe for MVD I'll have to go out of state. Thank you and to our other Colin....hello.

    • Tnhurtsme
      Tnhurtsme joanne49021

      Posted

      My pain has been constant but my meds are working again since i up the dose im always on them 24-7 im looking at mvd i have my 2nd mri to check for blood vessel that may be on it im from texas
    • colin04561
      colin04561 Tnhurtsme

      Posted

      Well, we have a boatload of top notch guys on the East Coast if there is no one in my home state of Texas (hook 'em) to see to you.

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.