Remitting Hemifacial Spasm - surgery or not?

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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.

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  • Posted

    Hi Roseann,

    I underwent my MVD surgery 3 months ago, although not at Bristol, it is unusual to have these long term remissions, is your doc sure it IS hemifacial spasm ? I have had this problem for over 6 years now, and if I get 1 good day, then that is bliss !!

    There is a link to this condition in the forums, which a few of us have contributed, it is worth a read, all the best.

    Sean.

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  • Posted

    Hi Sean

    Thanks so much for replying. My consultant (Mr Patel at Bristol) says that he does come across those who experience remissions, but I've yet to hear anyone else report this on any of the forums. I have had an MRI and it does show a loop.

    Hope your surgery has done the trick - how good would that be. This is one nasty condition which only those who experience it will quite understand. My life has changed dramatically on account of it and the once sociable Roseann is now much quieter and oft reclusive. All best wishes and thanks again for taking the time to respond. R

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  • Posted

    Hi

    I had MVD surgery in Leeds in Dec 2010 and it is the best thing I

    ever did!!

    I had suffered from Hemifacial spasm for nearly 6 years prior to this and it really was the bain of my life!

    The very thought of having my photo taken sent me into a panic and I constantly covered my face with my hand.

    I fully understand how you feel....

    The surgery was a complete success and despite the first 2 days

    of feeling really groggy and sick, I had NO PAIN at all afterwards as the wound was numbed.

    I was in hospital for 5 days and had the best care from the consultant. I was off work 8 weeks to recover and I can honestly say it has changed my life.

    I am much more my old cheery self and have now had umpteen photos taken........the change is unbelievable.

    I no longer have ANY spasms or twitches and my smile is back to normal!

    I wish you all the best whatever you decide but I would certainly encourage you to have it.....it's definatly worth it.

    Linda

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    • Posted

      Hi

      I was considering the operation but the doctor said it is the last thing he would support as I am 32. There is one percent I might have end up with brain damage, but reading your opinion makes me think, maybe I should. I don’t know what to do I am so embarrass to interact with people. One side of my face dropped because of the botox on the other side. Looks messy, and even the botox does not really help anymore.

      Thank you for posting this, it gives me so hope

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    • Posted

      Hi,

      I live in Australia and had the surgery in 2011, after trying all the options abvailable and not getting any better.  There are a lot fo risks as with any surgery and you do have to weigh these up and consider your own situation and that of your family.  The right side of my face started as a slight twitch of the eyelid which progressively worsened until the entire rhs of my face would contort and I felt like Quasimoto must have!  Medication was prescribed but AI found I was taking three times the prescribed amount and still only getting minor relief.  I tried accupuncute with my doctor but again the results were not great.  Botox started out good but on a couple of occasions my surgeon managed to include a nerve that caused my eye to remain half closed for the three months it takes for the Botox to wear off, also I found that the Botox was starting to wear off after six weeks.  My surgeon was amazing and I had no side effects but unfortunately I still have a slight twitch.  I am 47 years old now and a shift worker so not sure if any of that has a bearing on my overall condition.  I have found that closing my eye when it twitches is easier but of course the usual comments come from people who don't know me..."is something wrong with your eye etc" or even "are you winking at me".  Children stare and I have contemplated wearing glasses with a tinted lense so no one can see my eyes!  I am considering contatcing my surgeon again to see if anything else can be done.  Hope this helps.

       

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    • Posted

      Hi I'm a member in the facebook forum.I suffer with HFS and I noticed that you said you had your operation in Leeds,I'm from Wakefield and was surprised to see that this was done in our area.I have yet to get a referral but thought the nearest hospital in Bristol with Mr Patel. Could you please give me some details on who you saw and what your experience was like.It would be greatly appreciated.Thankyou so much Carol
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  • Posted

    Thanks Linda, that's really heartening to hear from someone who's been there and got the tee-shirt, as well as being spasm-free! I am honesly petrified of the operation, but it would be wonderful to get my life back as you have done. Totally empathise with all you say and am just delighted that you've come through it all and are you again, smile and all. Very best wishes and long may it continue, Angela
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  • Posted

    Hi Linda,

    It's great to hear that your MVD surgery was a complete success, congradulations! May I ask if the spasms were gone the moment you woke from surgery or how long afterwards? Thank you in advance.

    Hi Angela,

    Thank you very much for your kind wishes on my discussion thread. I can only say that you will know when the time is right for you to opt for surgery, without persuasion from anybody. The facial spasms cause not only embarrassment socially but also affect one's concentration level in carrying out everyday tasks.

    Other than the skill of the surgeon (the most important factor of course), you may also help yourself in the recovery process (should you decide to go ahead with surgery) by getting in the fittest physical state and adopting a healthy diet. There are many websites that advise on the right diet pre and post surgery. I have been taking brisk daily walks uphill/downhill for 1.5 hours months before the surgery, and eating lots of fruit/vegetables/nuts.

    I can honestly say that this brain surgery is less scary for me than a visit to the dentist to extract a back tooth under local anaesthetic! I suppose the worst part was the waiting, especially on admission day when I received the morning call from the hospital to inform me that there is a bed for me and I should check in around 6pm. That was one of the longest days for me.

    I wish you all the very best and if you have any questions, those of us who had the mvd surgery will be happy to share our experiences.

    Kind regards

    Leon

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  • Posted

    Hi Leon

    Thanks so much for your empathy and good advice. I am quite badly out of shape (high BP, overweight, not exercising because the spasms are worse when mobile etc) and I think you're advice is spot on - if I felt better generally I might be braver and more optimistic. I can just imagine what a long day it was before your evening surgery and there must have been a great temptation to 'do a runner'. I am quite brave when awake and in control (don't have anaesthetic at dentist) but am **** scared of going under.

    It's absolutely brilliant to receive such encouragement and support via this forum and it's clear that people who suffer from HFS (and I use the word 'suffer' advisedly) are all really good people. Heck, I feel a theory coming on............... only nice people get HFS!

    Take good care and so so so hope that you will end up spasm free and fully enjoying life again with a broad smile. Angela (aka Roseann)

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  • Posted

    Hi Leon

    Thanks so much for your empathy and good advice. I am quite badly out of shape (high BP, overweight, not exercising because the spasms are worse when mobile etc) and I think you're advice is spot on - if I felt better generally I might be braver and more optimistic. I can just imagine what a long day it was before your evening surgery and there must have been a great temptation to 'do a runner'. I am quite brave when awake and in control (don't have anaesthetic at dentist) but am **** scared of going under.

    It's absolutely brilliant to receive such encouragement and support via this forum and it's clear that people who suffer from HFS (and I use the word 'suffer' advisedly) are all really good people. Heck, I feel a theory coming on............... only nice people get HFS!

    Take good care and so so so hope that you will end up spasm free and fully enjoying life again with a broad smile. Angela (aka Roseann)

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  • Posted

    Hi Leon,

    As you are aware, I have had my MVD, and still having my spasms.

    People reading this valuable thread must realise, that this is major surgery, apart from the positive side of having a succesful surgery, this can also have very serious risks, and I would rather visit the dentist any day ! the HFS site, which I found to be way out of date, has many people having had this surgery, many a success, but what one must also realise, many not successful, and some horror stories of complete hearing loss etc etc, just wanting to make people aware that's all, as would there surgeon in any case.

    I hope all of you, waiting, or just thinking about surgery, will go for it, as it is a must eventually, Botox is a waste of time, it only works for a short while, go for the surgery, and I wish all of you the very best outcome...cheers.

    Sean.

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  • Posted

    Hi Angela

    Thanks for your kind comments. I was spasm free immediately.......the consultant checked every day and was so understanding as I

    was waiting for them to come back as I just couldn't believe they

    were gone!

    I forgot to mention that I had to stop the Botox injections for 8 weeks before the operation and at my post op check 2 months later everything was fine and I was discharged

    Best wishes for the future

    Linda

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  • Posted

    Hi rosanne,I also find that I only get relief for 3 months maybe 4.Funny I just did a round of botox the start of january and I am spasming so much lately that I have spun down into recluse mode. I am in the middle of going for job interviews and am terrified because they always comment and ask me if I have bells palsey,so hard to face the public sometimes.Ready for disability if I don't get hired soon.
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  • Posted

    Hi Lilith

    I so empathise with what you're going through, and feel for you concerning those job interviews. It's bad enough coping with HFS when you are in a safe employment environment, but hideous in a new one or in an interview situation. I went through something similar a couple of years ago and found big meetings so hard to handle. It's like you can never rely on your face to do what it's supposed to do, and just when you should be looking pensive or concerned you start winking at everyone - it is rubbish, and it's really irritating when someone says "don't know what you're worried about, we hardly notice it." I was fortunate enough to be old enough to retire (in relative poverty!) but it must be so tough for you guys who have to keep punching through it in the workplace. It's also so so tiring eh. But, we mustn't give up and let it beat us - there is a potential cure out there and if we're brave enough to have the op (maybe more than once, ouch) then there really could be light at the end of the tunnel. But, that doesn't stop me from being scared stiff of course. And, I know what you mean about recluse mode - it's easiest, but it's also depressing. I'm all for continuing to be sociable but only with people who make me feel safe and if I spasm out of control they talk about it rather than looking away or copying my facial contortions.

    Sorry, I'm prattling on. Take good care and don't go under those covers..... cheers, Roseann

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