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MVD surgery 8 days ago

Posted , 30 users are following.

YKL
YKL

I am a 54 year old man living in North London, who was diagnosed with hfs about 5 years ago. I had botox treatment for about 4 years, the first couple of years with satisfactory result, but gradually the injections were becoming less effective. I had my first consultation with Mr K at the NHNN Queens Square, London in Feb 2010 when he explained to me in great details about the chances of success and all the risks involved with MVD surgery. At this stage I was prepared to risk losing hearing on my left ear in exchange for getting rid of the spasms. But Mr K also mentioned the possibilty of developing bell's palsy which I thought was worst than twitching, and that it is a permanent condition. After doing more research and realised that bell's palsy is only temporary, I contacted Mr K again in Oct 2011 to arrange the operation. I was operated on Tue 3rd Jan 2012, discharged on Sun 8 Jan 2012 to continue with my recovery. I thought I was immediately spasm free when I woke up, but in fact it seems to be worst the day after. Mr K's assistant told me that the nerve may take some time to heal and it may be a few weeks before we know if the operation is successful. I was not too bothered as I have read the experiences of the members of the HFS association. I am just grateful for the skill of Mr K leaving me with my full hearing intact and no uncontrolleable discomforts other than dizziness for the 1st 3 days. Today is the 8th day post-surgery and I am off all painkillers already. The staples were removed yesterday and the incision wound feels better. I shall certainly let you know when I am finally spasm free. I will be most happy to answer questions from anybody if it helps.

7 likes, 400 replies

400 Replies

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  • ben28938
    ben28938 YKL

    Posted

    Hello YKL,

    Great to see you remove all the pains from HFS! And done the successful surgery! I a so proud of you and you have made the right decision!

    Thus I am not from UK, I am a 35 years old man from HK, I suffer from HFS about two years, feeling that the this gonna be worse...it really freak me out and which affect me both social and career! I am very happy to going the group here and can share with you here even this msg aldy over a year...

    Hope you have a better life!!

    • Roseann
      Roseann ben28938

      Posted

      Hi Ben, I am not sure if YKL is still active in this group so thought I would reply just in case he doesn't see your post.  I am sorry to hear how this is affecting your social life and your career; it is a nasty condition and many of us know how debilitating and emotionally blunting it can be.  I would advise you to join the two Facebook groups (Hemifacial Spasm International Support Group, or, Hemifacial Spasm Worldwide Support Group) if you are able to do this from HK.  There are definitely a couple of Hong Kong members in these groups and they may be able to advise you about local sources of help.  I am sure you have heard this before, but Botox is the only real helper for HFS and surgery (Microvascular Decompression) is the only potential cure.  Wishing you all the best, Roseann
    • ben28938
      ben28938 Roseann

      Posted

      Dear Roseann,

      Thanks for your warm reply! I am now feeling not alone and ready to facing the HFS, as I have been turned down by many unknown of the illness nowadays... I lost the hope until I found that many of you have still kept the hope and facing the illness! And also thanks for inviting me to join the Facebook groups .

      After having this spasm, I have consulted both Chinese and Western medical, for the western treatments, seems doing the MVD surgery can permanently heal the illness if there is no any serious side effect,

      As I have tried Chinese medical treatment like acupuncture, and with a gentle electric throughout, for the first few times treatments I feel kind of reduce the twitch when wake up in the morning, but no significant result by the end when I decide stop the treatments. And later on I felt that my mouth also affected especially when smiling, eating and some other oral movements...

      So I didn't do anything now because of the many unknown areas of this illness and no effective treatments can do. ..

      Above is my little background I hope everyone can getting better everyday and enjoying what we still have!

      P.S. sorry for the poor Eng.

      Ben

    • Roseann
      Roseann ben28938

      Posted

      Hi again Ben, thanks for sharing your story and I am so sorry that no Chinese medicine or treatment has worked for you.  It is a normal progression that HFS affects your mouth when smiling, talking, kissing, eating etc.  When the mouth pulls up towards the eye and freezes there for a short time, it is called 'tonus spasm' and it isn't very pleasant.  I don't think any alternative treatment really works unfortunately.  This thing is like two electrical wires touching one another and causing sparks (spasms!).  The only way it can be fixed is by separating those two electrical wires and this is what happens when you have MVD surgery; the surgeon either lifts one of the wires out of the way, or puts some teflon padding beteen the wires (by this I mean the nerve and the artery) so that they no longer touch one another.  If you do decide that you want to have surgery and if your insurance will cover it, then it's best to choose your surgeon VERY carefully.  Not every neuro surgeon knows how to do this surgery and you need someone with a lot of experience and proven success.  If you can't manage to have surgery then Botox is definitely the best helper, on a temporary basis.  And, if you can't have either surgery or MVD, then trying to limit stress and sleep well is probably the best hope of still having a good life.  

      Hope you can continue to hope for a cure and enjoy life with the spasms too.  It affects your quality of life but you still have life!  And your English is very good too, well done! 

  • warren50082
    warren50082 YKL

    Posted

    Hello, I am a 43 year old man who lives in tge USA and I had MVD surgery two days 1/5/2017 ago after 6+ years of Botox treatment (limited effectiveness, very limited recently) and through the skill of my surgeon Dr. Carlos David I made it through surgery with no hearing loss or major complications, but twitching persists.

    I have been told nerve was aggravated due to surgery and time will tell if surgery will be a sucess, but I am optomistic.

    How are you today? Was your surgery ultimately sucessful? How long did it take for twitching to stop?

    Thanks for sharing your experience. While you live accross the pond your experience is nearly identical to mine. I hope all is well with you.

    Regards,

    Warren Johnston

    • YKL
      YKL warren50082

      Posted

      Hi Warren, thank you very much for your good wishes, unfortunately I suspect that my surgery has failed. It has been 4 years and 4 days since my surgery and there have been no further improvement.

      As you may have read from others experience on this thread, it is still very early days and there is a good chance that the spasm will disappear given time for the nerve to heal. Very glad that your hearing is intact and there are no major complications. Wishing you a speedy recovery and becoming spasm-free soon.

    • warren50082
      warren50082 YKL

      Posted

      Thank you for your reply and support. I am sorry your surgery did not have the results tgat you hoped, but brave of you to go for it. I understand the risks and reservations. I am glad no complications that are possible.

      Your sharing has helped me and I really appreciate it. Have a great day and hope docs can offer a solution for you in the future.

  • colleen90451
    colleen90451 YKL

    Posted

    Hello, I had MVD surgery 1week ago and so far it went well. I had no pain and I am praying for years of no pain. I am still a little sore on the side of surgery and headaches but other than that I thank God for my healing. I also thank my Doctor for doing a wonderful job. Will update later with additional results.
    • Roseann
      Roseann colleen90451

      Posted

      Many congratulations Colleen.  Hope you will be able to rest and heal in the weeks to come.  Your post surgical symptoms sound entirely normal by the way.  Hoping that you will forever have a quiet face.

      And sorry, I meant to say that I am not sure whether YKL is still active on this forum.  He was a great help to me prior to my surgery 4 years ago.

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