Hemifacial Spasm

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I've had the symptoms for nearly ten years now (am 56 now); I gave into  botox for about 4 years but gave up on it a year ago as it didn't really do much except make me look weird!  I tried acupuncture & saw a chiroptractor but no help. I've finally given in to having the operation which will be in 6 months time.  I've also had movement around my other eye about 3/4 times a year over the past 4 years, but lately it has progressed which is a real worry and am yet to discuss this with my surgeon. I've noticed it is sometomes starts when I paint (a hobby), guessing the fumes trigger it!? I do wonder if the original cause is from either whip lash or my ex husbands violent behaviour although both happened over 20 years ago.  I'm looking forward to getting through the op now although I'm really scared. Has anyone else had this on both sides?

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  • Posted

    Hi Suzi.  Sorry to learn of all your troubles, past and present.  I too gave up on the Botox when my face became solid and made me look rather asymmetrical.  Towards the end of my HFS journey (I had successful surgery in Bristol last year) both eyes were sometimes twitching, but I think the 'other side' was just doing a sympathy thing with the HFS side by way of a balance.  If you don't mind me asking, where will you be having your surgery?  No one could have been more scared than me; I even thought about running away from the hospital on the night before surgery.  But, as many others have said, it was far less awful than I had imagined.  It is a big operation and it's pretty normal to feel dizzy and nauseous afterwards, but the medics will sort you out with all the necessary meds to alleviate any symptoms.  I wrote a diary of my first 3 weeks post op and you are welcome to see it if you send me a private message (top right hand corner) with your e-mail.  If you are not already a member of the Facebook Hemifacial Spasm International Support Group I would recommend you to join; it is a wonderfully supportive group with loads of useful information on site.  Let me know if I can be of any help to you as you move towards surgery.
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    • Posted

      Hi, thank you for your message, my op is also in Bristol; I researched surgeons in this field and the same name cropped up so I asked my doctor to write to him, I was so pleased he has accepted otherwise I'm not sure if I would have gone ahead. I don't do facebook but my daughter does, I will send a message through her, or maybe I should join for the support.  Thanks again
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    • Posted

      Hi again Suzi.  So pleased to hear that you are going to Nik Patel in Bristol; he really understands how HFS affects people and, in my opinion, is a safe pair of hands.  He gave me my life back and I shall be eternally grateful to him.  It may be worth joining Facebook because the group is so supportive and there's no question that a member can't answer.  And, of course, it's a private group and not something Joe Public can view.  Please ask anything that you need in a private message.
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    • Posted

      Hi Sue

      Go to the top of this page and on the right hand side you should see a box with your username and in this box it says 'Messages'.  Click on this and then I think you have the option of sending a message.  If this doesn't work, try clicking on the name Roseann in these boxes and see if it gives you the option of sending a message!  I will also try to message you with my e-mail so that we can communicate more easily!

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  • Posted

    Hi Suzi

    I do not at present have both sides and really feel for you. I wonder if you may be right about the whiplash as shortly before I began having symptoms (about twelve months ago) I had a bad fall where I did suffer a blow to my chest and I had to twist my neck as I fell to prevent hitting my face. I know what you mean about the paint. I have tried to eliminate all sorts of things from my life from swimming to wearing perfume as I thought maybe they were causing it.

    My spasms seem to be getting slowly better than they were a few months ago and I put this down to a number of people praying for me. I dont know if you have any beliefs but that seems to be doing it for me. 'Praise God'  I'm not completely free of it but there is a marked improvement as just a few weeks ago my cheek was nearly jumping off my face. I no longer wake up in the morning with the spasms.

     

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    • Posted

      Glad to hear you don't need surgery.  I did go to a chiropractor but they were not comfortable treating me as they didn't really know about the condition.  Take care 
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  • Posted

    Hi Suzi

    Sorry to hear that this is also affecting your other eye and that it is getting worse. It's good that you have an operation timetabled though.I am sure that discussions with your surgeon will provide you with some further insight with respect to the incidence of spasms on both sides of the face. I think I recall reading somewhere that HFS may happen on both sides, but I think this is rare. I know that there is a condition called Blepharospasm which is characterised by twitching of both eyes but if you're have an MVD operation scheduled, I imagine this doesn't describe what you're experiencing. I suppose asking the specialist surgeon well before your op about your changing condition will help.

    I wish you all the best

    Ed

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    • Posted

      Hi Ed

      Thank you, the nurse that used to adminster the botox said movement on both sides is called Distonia which I researched, it is inoperable as the problem is deap within the brain. I don't know if that condition affects both sides of the face starting at the same time, where as mine are years apart.  I'm having another MRI in Bristol in a few week & further tests before I meet up with the surgeon again so I will be able to ask,  I wish I knew the answer to this though.

      Many thanks

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  • Posted

    Hi Suzi, I went to see Nik Patel in Bristol last week for a private consultation about possible mvd surgery and he said he would put me on the NHS list but needed me to get my MRI scan put onto a CD so he could see exactly what was going on as the written report was not detailed enough. I am now trying to do just that - and it's not proving very easy since the admin efficiency at St George's Tooting leaves a great deal to be desired.  I asked whether the condition could have been triggered by a jolt to the head (I was in a car crash about 6 years ago) but he said not. He said the waiting time would be about 8 months for the op. May I ask when you are having your surgery? All best, Sally
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    • Posted

      Hi Sally, when I first saw Nik Patel in August, he asked me to have another MRI (at Bristol) as my previous one was 5 years ago in my local hospital (Torbay). Did he not offer you one there or was yours recent? He said the waiting list was approx 6 months then.  I had the MRI a couple of weeks ago and also 2 other test which map out the hearing and facial nerves. I'm still waiting for a surgery date but expect to hear soon as the tests are now done; will let you know  Wondered if it's worth paying privately for a new scan? . Good luck, Sue
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    • Posted

      Hi Sue, thanks for your reply. My one and only scan was done in July this year. I've had HFS for 6 years and for the last 4 years I've been having Botox but have now stopped that as the doses were getting bigger and more spread out as the condition spread from the eye area down the left side of my face making my face feel tense and look weird on that side. Keep me posted about your progress! Good luck. Sally
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