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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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  • YKL
    YKL

    Posted

    Hi Kassy,

    So very pleased for you! I can just picture you with a big smile on your face, making up for all the days when you can't!

    I just hope that Prof C will still be practising on the day that, heaven forbid, I decide on a second MVD.

    Take care.

    Leon

  • YKL
    YKL

    Posted

    You have maintained, if not increase, Prof C's 80% success rate!
  • Kazzy_D
    Kazzy_D

    Posted

    Do you know, I thought exactly that. He must have beed really pleased. Though not as pleased as me!

    I hope I don't ever have to go through the op again (if the spasms were to ever return) but if I did, I would have no hesitation to go to him again. I hope your recovery continues and you don't have to!!!!

    As an aside... did you know you can get a free flu jab because you have HFS??

  • YKL
    YKL

    Posted

    I have never had a flu jab, often heard that the first reaction is a dose of Flu! But it is good to know.

    Thank you very much for your kind wishes, I will probably live with hope for another 2 years before admitting that the first surgery has failed. Patience! Patience!

  • YKL
    YKL

    Posted

    People, please indulge me, I feel like singing Hallelujah from the rooftop! The first piece of really good news on this thread!
  • Roseann
    Roseann

    Posted

    Hi Kazzy and all

    I'll be the first to second Leon's 'Hallelujah' (by the maestro Leonard Cohen of course)! Can't tell you how pleased I am for your Kazzy. At last you and your family can have your life back - double Allelujah to that!

    Please keep in touch with us all via this thread and indulge all of our hopes for similar recovery and success.

    Very best wishes and well done, love Roseann

  • Kazzy_D
    Kazzy_D

    Posted

    Thank you so much for your kind good wishes. I just wish I could have a magic wand and wish this condition away from all of us.

    I really do wish you all the best and hope the future gets better. I wanted to post on this forum to give you some hope, as I know in my darkest days I honestly thought I would have this condition for ever, getting worse and worse. My little girl says I look younger. I think it's because I'm no longer screwing my face up with spasms.

    Kindest regards

    K x

  • Mrs_SM
    Mrs_SM

    Posted

    Hi Kazzy

    I'm so pleased for you. 35 is a terribly young age to get HFS, but unfortunately I've heard of even younger people getting it - poor souls.

    I just wish the consultants I saw could have been more encouraging - I think that's half the battle when deciding whether or not to go for the surgery.

    I'm pleased to hear our forum has been of some comfort to you, I'm sure it has helped all of us who contribute. Maybe there are more than we know about who read these "blogs" but do not have the courage to add their comments. To them I say you are most welcome to join in and don't feel embarrassed if your spelling etc is not perfect. We all understand, especially as the HFS makes it difficult enough to even see the keyboard!

    I hope everyone is as well as can be expected and managing to cope. After all, as Roseann said recently it could be a lot worse.

    Best wishes to you all

    Sylvia

  • YKL
    YKL

    Posted

    Hello Everybody,

    I have a little bit of assurance (just as an example) to share with anyone contemplating surgery. I have not mentioned this before, but I was quite terrified on day 3 post-surgery when it was time to remove the head bandage. I imagined that the incision wound would still be quite raw and there may be dried blood sticking the bandage to my scalp! I was dreading that I can feel the wound re-opening! But fear not, for there was another bandage (a 6-inch long plaster) over the incision wound, so the head bandage just came clean off and I felt nothing at all. Not realising that I had the plaster on at this time, I tried to scare the other patients showing off the back of my head, imagining that I look like Frankenstein monster! Even when the time came to change the plaster, it came off easily, no pain! This all sound so trivial, but if anyone have similar fears about any stage pre or post surgery, please ask.

    Best wishes

    Leon

  • Kazzy_D
    Kazzy_D

    Posted

    Hi

    I agree with Leon, It was almost an anti climax when I lifted my hair to show my incision to anyone. No one can believe it's heeled so quickly Also it was a surprise how little hair they shave off as its lower down than I imagined. It's day 19 and my hair has grown back quite a bit and I had my first proper hair wash today. Lovely!

    Sylvia, I agree about consultants not being encouraging. I did see another consultant first. He basically told me he did not want to operate on me (due to the possible risks) and that it was everyone elses problem not mine. He suggested I just learnt to live with it!

    K x

  • YKL
    YKL

    Posted

    I found this on BBC's website today. The symptoms are quite similar to HFS, but it is constant compared with the intermitant nature of HFS (a small consolation), but then people recover from Bell's Palsy without any intervention.

    www.bbc.co.uk/news/magazine-20123449

  • Roseann
    Roseann

    Posted

    Thanks for this Leon, very interesting indeed. It's always good that a high profile person can make others aware of the effects of losing one's smile and looking a bit freaky. On balance, if I had to choose, I would choose Bell's Palsy over HFS, wouldn't you?

    Bye for now, Roseann

  • YKL
    YKL

    Posted

    Well, yes, Roseann, I would choose Bell's Palsy over HFS, only because it goes away on its own in time.

    After the MVD surgery, I was counting to day 7 to be sure that there is no CSF leak or infection. Then counted to day 14 and I was relieved that I did not develop facial palsy.

    Good day everybody!

  • Kazzy_D
    Kazzy_D

    Posted

    We feel their pain! Maybe someone should write in and explain about HFS???

    K

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