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I just had MVD surgery for hemifacial spasm and I am feeling incredibly relieved.

Posted , 8 users are following.

bk93478
bk93478

Suffered with HFS for 5 years and decided to get it fixed . No Botox , no medication. Woke up from surgery spasm free.

1 like, 25 replies

25 Replies

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  • Marble
    Marble bk93478

    Posted

    Hi Roseann, thank you for that,  If it doesn't show up could you just email to me directly ____ Written like that in case they block email addresses,  That will fool them! :-)

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Roseann
      Roseann Marble

      Posted

      Have sent info to your e-mail address Mark.
    • Emis_Moderator
      Emis_Moderator Marble

      Posted

      As the info has been emailed I have deleted the post by Roseann. Also, do not try to get around moderation otherwise your account may be deactivated. If you want to exchange contact details or pass information on and cannot wait for moderation then use the private message service.

       

    • Roseann
      Roseann Emis_Moderator

      Posted

      Dear Moderator

      I totally understand about e-mail addresses, but the information that I was sending to 'Marble' may well have been useful to other people on this forum and I am confused as to why it should need to be deleted.  It was simply the names and hospitals of surgeons who I know to have performed MVD surgery in the UK.  I attached a caveat about not seeing this as a recommendation and the need for individual research.  I am a frequent contributor to this site and always try to abide by the rules.  Sorry if I have inadvertently crossed any lines.  If you are able to reinstate my list of surgeons then I should be grateful.

  • opoku55281
    opoku55281 bk93478

    Posted

    Congratulations! Will you be kind to let me know who did the surgery and where it was done?
  • hailey99089
    hailey99089 bk93478

    Posted

    Please help!! I have decided to have surgery for hemifacial spasm. I am so worried about all the things that could go wrong.

    I am also worried that I may be left permanently with a facial droop.

    I have Botox at the moment, but it does not really work, it helps, but I look like I have had a small stroke until it wears off.

    I have suffered from it for 4 years . I have 3 small children and do not want to leave them without a mum. I know the risk of death and stroke are small, but never the less I am really scared. Any advice .

    Thank you

    • Roseann
      Roseann hailey99089

      Posted

      Hi Hailey, I hope I am not intruding on this conversation but wanted to offer you some reassurances.

      Of course surgery is a massive worry when you have young children, but I would say that living with HFS is just as big a worry to you all.  The risk of death or stroke from this surgery is very very small but it is of course a risk as it is with any surgery.  The risk is even smaller when you are young, fit and healthy which I am guessing you are.  You will get a comprehensive pre-operative assessment which only approves you for surgery if you are well enough to undergo it.  

      As for the facial droop.....   About 10% of people have facial palsy following surgery (it often kicks in at about one week after surgery) but it invariably gets better (usually with the help of steroids) in less than six months and often just a matter of weeks.  This should not be a big concern, but it is a small risk.

      The most important issue of all is choosing the right surgeon.  I would suggest you join the Facebook Hemifacial Spasm International Support Group where there is a list of surgeons used by others for this condition.  You would still need to do your own research via the group but it would give you a starting point.  Each surgeon has their own success stats but these are not generally published.  You should be looking for 80-90% cure rate with minimal instances of hearing loss.  This is a not a surgery where your local man/woman is best; it's worth travelling for the best surgeon.

      I was 62 when I had surgery here in the UK and I was fat and not very fit.  I came through it with no complications and was spasm-free six weeks after surgery.  Not everyone is spasm-free immediately after surgery (only about 30% I believe) and sometimes you have to be patient for the nerve to heal.

      Wishing you the very best in your decision making.  No one could have been more scared than me I promise you!

  • oloyede13222
    oloyede13222 bk93478

    Posted

    Hi BK93478,

    Please recommend a neurosurgeon for this to me.

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