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How many time can you have the mvd surgery?

Posted , 3 users are following.

clh
clh

I have had the spasms since 2010 and started with Botox doe two years and decided to get the surgery . In 2012 of April I had my first surgery putting the saline pads between my 7 th and 8 th nerve. The recovery didn't go so good lots of complications but I was spasm free .

My head hurts so bad and I kept going back to the surgeon they kept putting me me on different pills and after doing some test he said we need to operate again. So that September they had to open me up and found that there was a lot of scare tissue and a lot of water outside the brain ( why my head felt to heavy I could badly hold it up). I wasn't spasm free and over the last 4 years my head and nose always feels like I have pressure. I started the botox again and isome times I get relieve from the spasms but not the pain my head or nose.

It has taken over my life, although every day I get up and I go to work I never look at anyone directly or laugh or smile ( I look awful when I do).

I live in Canada and if anyone knows of a good doctor that might be able to help stop or make it less or know of a different procedure that would help I would welcome the feed back.

0 likes, 9 replies

9 Replies

  • Roseann
    Roseann clh

    Posted

    So sorry to hear of your bad experience clh.  I am on a number of forums (fora!) and have heard nothing but good about Dr Kauffman (Kaufmann?) in Winnipeg.  He certainly has the best reputation for this type of surgery and has heaps of experience too.  Wishing you the best.  If you want to connect with others who have seen Dr K then join the Facebook Hemifacial Spasm International Support Group.
    • clh
      clh Roseann

      Posted

      Thank you !

      I will call my Dr. And see if he will do a referral.

    • Roseann
      Roseann clh

      Posted

      I have sent you a private message clh.  It contains a link to a lecture given by Dr Kaufmann - one of the best I've come across.

    • clh
      clh Roseann

      Posted

      Thank you Roseann

      I have made an appointment with my Nero doctor to go over options and I am going to bring all this information with me.

      I just need to be able to put my head down with out pain or pressure

    • karen36710
      karen36710 clh

      Posted

      You can self refer yourself to Dr. Kaufmann.  Also I know that OHIP will cover the surgery but not the transportation or hotel costs.
    • Roseann
      Roseann karen36710

      Posted

      I will send it in a private message because links are not normally allowed in regular posts.
  • karen36710
    karen36710 clh

    Posted

    Dr. Kaufmann Winnipeg....check out the website for University of Manitoba
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