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Remitting Hemifacial Spasm - surgery or not?

Posted , 27 users are following.

Roseann
Roseann

Wonder if anyone else experiences long remissions from their HFS? I can sometimes get up to 3 months off before it comes back and this is bliss. I have been offered the MVD surgery at the Frenchay in Bristol and am agonising over whether I should or shouldn't. On a bad day it's yes and then when in remission it's no. Another question is whether anyone else has undergone this surgery at the Frenchay (NHS Hospital) and how they found the whole experience. Thanks if you are able to help me on this.

3 likes, 121 replies

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  • vivian1019
    vivian1019 Roseann

    Posted

    so i just went to the doctor office and check the blood work result. it was not due to megnesium deficiency...meaning i have to wait for the MRI result. hopefully nothing is wrong in the brain and it's not HFS.....

    • Roseann
      Roseann vivian1019

      Posted

      Very good sign that your bloods came back with good results.  The MRI will be helpful I'm sure.  But, be aware that a compression may not be visible on the MRI.  No test is entirely foolproof unfortunately.

    • vivian1019
      vivian1019 Roseann

      Posted

      Roseann, Yes I understand that the MRI might not show anything. I just remembered that I had braces tighten up on Jun 30 and all twtiching symptoms started after that...around mid July...I dont know if might be the reason.... 
    • Roseann
      Roseann vivian1019

      Posted

      Some people have suggested that their spasms coincided with some dental work Vivian, but if this is the case the spasms were always going to happen.  Dental work could not actually cause the compression but might cause some stress that triggers the spasms I think.  
  • clh
    clh Roseann

    Posted

    HI Roseann

    I have heard in here of great sucess with the surgery but unfortunatly that is not my story.  I MVD  in April of 2012 and had complications and developed water on the brain. My head felt like it was 20 pounds and I kept going back and telling them my head hurts something is wrong  but my surgeon said no it will take a while. I finally went in and was crying and my husband said "look I know my wife she is a goer and she doesn't stop she can not even function and it takes her everything to go to work." There is something wrong with her she is not a complainer. 

    So they did test that day and when it came back 3 days later I had water on the brain and I have scare tissue that build up. So that September I was operated on again. 

    It took away my spasms for a few months put slowly it came back,  I am  back to botox every three months and it helps but not alot. 

    It has been 4 years since my surgery and now I have  my left side of my head I can hardly touch somedays better then others. I have headaches all the time and my eye hurts all the time. My Nero Doctors says I have now developed cronic pain. 

    CRONIC PAIN???????????? No I have something wrong and I won't take medication to drug me up. I have to work everyday 7-4.30 and we have 5 fosteer children that play sports and have activites I need to get them to. I can not have a foggy head when I am driving them around or helping them with their homework. 

    So for me I am worse then before my surgery and if I had to do it all over again I would not but that is me and my situation and this does not happen to all forsure. 

    • Roseann
      Roseann clh

      Posted

      Hi CLH

      Thanks for sharing your story, and I am so sorry that it was such an unhappy one; you really went through the mill and I feel for you.  Yours sounds to be a very very unusual outcome and the pain is not something that you normally associate with HFS (could it be Trigeminal Neuralgia I wonder?).  You clearly have a very busy life and I can understand why you need to get some answers and some relief from this pain and fogginess.  If it is not a rude question, can you tell us where you had your surgery and who your surgeon was please.  Wishing you much better days ahead and, above all, some answers.  Take good care of yourself as well as your family.

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