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Suffering HFS for quite a long time…

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Twinnie_4
Twinnie_4

Hello…I am 58 yrs. old and had been suffering HFS for quite a long time…

It started with a very slight twitch on my left eye in 1990, but I didn’t mind it at all for it just happened so rare to thought it was just an eye stress with nothing to worry about…and it never alarmed me that it could come to worse because I was not aware there was such as HFS…

Until came 2004 that  it started to occur frequently and noticeable with my left check, lips and chin twitching to be very embarassing…it became worst each day that in 2006 when I heard about the botox injection, I decided to undergo and scheduled every 4 months…

It did fine on the first year, though not totally but at least the twitching has minimized and it was okay for me to feel a lot better of comfort…but on the next year up to present, I noticed that little by little the botox injection has no effect for me anymore, and it’s getting more worst than before that now there are times that my left eye closes involuntarily together with my lips being pulled to the side…

I used to be a funny and jolly person with a sweet smile for everyone, and a wide opened lips showing all my teeth when I laugh…but now, suffering from HFS made me a loner that I now rarely go out to enjoy life...and I can’t go out without my sunglasses on…so imagine me with sunglasses even on a cloudy day or inside a mall, establishments or a building…lol…

I really miss my normal life…I am from the Philippines…I want to know if how much is the cost of MVD Operation, or,  I want to have an idea if how much will it cost me for the operation, doctor’s fee, medicines and hospital bills, or all in all expenses…and a lists of hospitals and surgeons who perform succesfully MVD Operations…Thank You…

0 likes, 4 replies

4 Replies

  • Roseann
    Roseann Twinnie_4

    Posted

    Hi Twinnie4.  Your story is so sad and so familiar.  You have suffered this for far too long and I don't know how you've coped.  I am in the UK and can only really tell you about prices of MVD in the UK.  My surgeon, Nik Patel, who operates from the Spire Hospital in Bristol, UK, charges about £17,000 for the operation.  He did a very good job for me and I am now spasm free.  In the US I believe that Dr Sekula (who is based in Pittsburgh and known to be the best) charges over $100,000 for the surgery.  I don't know much about Australia but believe that Dr Dexter in Sydney has a lot of success.  I think that there are good surgeons in Singapore too, but regret that I don't know much about the Phillippines.  If you join the Facebook Hemifacial Spasm International Support Group you will certainly be able to connect with other members from the Phillippines.  They can advise you of local facilities I am sure.  Wishing you well.  You certainly deserve a cure from this horrible condition.  I also became a recluse and only went out in sunglasses.  Take care.
    • Twinnie_4
      Twinnie_4 Roseann

      Posted

      Hello, Roseanne…thanks for the info…sad that there is no MVD surgery here in the Philippines…and as Philippine peso against dollar, for the surgery alone $100,000 is a very big amount…plus medicines, fare, accomodation and other expenses, really can’t afford it…sigh…hope other cure and remedy could be discovered aside from surgery…thanks and God Bless...
    • Roseann
      Roseann Twinnie_4

      Posted

      Hi again Twinnie4

      I do understand that cost is a massive barrier for you in the Phillippines and my heart goes out to you.  I wish you all that you wish yourself and hope that one day there will be an answer for you and others in your position.  God bless you too. 

    • Twinnie_4
      Twinnie_4 Roseann

      Posted

      Hi, Roseann…

      Financially, I feel so hopeless…but I have Faith, and Faith does wondrous things, even the impossible…God listens to every hearts’ desires, and I know He will put back the smiles on my face, and the normal life that I truly miss…

      Thanks again, Roseann…I will keep you and this forum updated…Hugs…and God Bless…

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