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Recently diagnosed with HFS...completely confused...

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katebet1974
katebet1974

I have recently been diagnosed with hemifacial spasms. My neurologist actually got to see them first hand recently, and until then he thought what I described to him were likely to be another form of epileptic seizures (I have simple partial seizures). The spasms started with twitches by my left eye every few weeks or so, but they have progressed over the past few months to happening every day and ranging from a small twitch by my eye to taking over the entire left side of my face from the eye to my chin – at times I can’t open my eye due to the spasms. It is really distressing. I had an MRI done which my neurologist said showed nothing. However, I was in hospital in late 2012 for a migraine and an MRI done then found that I had a torturous artery – I can’t remember the name, but it is the same artery that can press on the nerve that triggers hemifacial spasms. I’ve started having botox injections, which I hate as my face is a bit droopy (not very visibly, but I can feel it and my smile is lopsided now) and I’m waking up choking at night (but I don’t know if this is coincidence or actually caused by botox), and I’m still getting spasms (it’s almost a week since the injections).  I’ve also read that botox stops the spasms, but not long term and they will progressively get worse. So, my questions…does an MRI always pick up arteries pressing on nerves? Does anyone else find they wake up choking after having botox injections? And what do I do now – continue with botox, talk to my doctor about surgery, put a bag over my face, take up a career doing Elvis impersonations? Sorry to sound flippant, but seriously if I don’t laugh sometimes I’ll cry and/or scream. Thanks everyone...

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  • Roseann
    Roseann katebet1974

    Posted

    Hi Kate, I had HFS for 9 years and live near to Winchester, UK.  I have written up my whole story and many of your questions are covered in this.  I was eventually completely cured by MVD surgery in Bristol last year and had no complications.  If you would like a copy of my story then join the Facebook Hemifacial Spasm International Group (or there is another one which is not called 'International') and you will find my story posted yesterday.  Alternatively, send me a private message by double clicking on my name and then 'send message' with your e-mail address and I'll forward it to you.  To answer your specific question, MRI does not always pick up the compression and needs to be ordered and interpreted by an expert in HFS.  I never had any choking after Botox, but the swallow nerve does sit close to the nerves in question I believe.  We all certainly understand the laugh or scream/cry scenario.  Don't give up, there is a lot of help out there both in terms of emotional support and cure.
    • katebet1974
      katebet1974 Roseann

      Posted

      Hi Roseann - thanks for the info on the Facebook group - I'll be logging onto Facebook soon to check it out! And thanks for the encouragement - this group is certainly supportive and I definitely don't feel so confused and lost anymore! Cheers, Kate
  • TexMex
    TexMex katebet1974

    Posted

    I have had this condition where my whole face goes into a spasm. Left eye closes to where it appears I am winking. This is accompanied by the left side of my mouth rising up. This is quite embarassing since I am an elementary teacher. Students ask me if I am OK. I have asked doctors about this and was told it is stress, lack of sleep, and caffiene. I am not much of a caffiene drinker other than two sodas. I do have trouble sleeping (sometimes due to the twitching) and yes there is stress in teaching but now I feel like I am in a good place. I am frustrated and want to get this situation resolved or at least find an answer. Posts from others have given me direction. It looks like my next step is to go to a neurologist?

    Thoughts

    • Roseann
      Roseann TexMex

      Posted

      Hi 'Tex', so sorry to hear about your facial issues; it must be so testing to have this when you are teaching.  I imagine it's also very tiring for you?  Have to say that your symptoms sound like classic Hemifacial Spasm, but only a good neurologist (with experience of HFS) and an MRI scan will say for certain.  Please do join the Facebook International Hemifacial Spasm Support Group - you will find videos of people with spasms, stories, questions and answers, and even lists of doctors who have been used worldwide.  I am not sure where you live, but, if in the UK, there are excellent centres in Bristol, Liverpool, London and Southampton for HFS (and probably many more I don't know about).  If you are in the US then there are lots of doctors who treat HFS but Dr Sekula in Pittsburgh seems to be the man who works miracles.  If in Canada, then Dr Kauffman in Winnipeg seems to be the 'must have' doctor.  Anyway, these are just some thoughts for you.  If you do have HFS then many people try 'Botox' as a way of calming the symptoms on a temporary basis, but the only cure is I am afraid surgery to the nerves which are causing the problem.  It is not brain surgery, but it sits in that area of the head!  Please let us know if there is anything we can help you with in terms of information and I wish you all the best as you try to get to the bottom of these symptoms.  Roseann (real name Angela Bond)
    • katebet1974
      katebet1974 TexMex

      Posted

      Hi TexMex - sounds exactly like what I get. it is really distressing...and I get the stares from people in public - not fun! Sometimes I can't open my eye and it gets very watery. It's amazing how quickly doctors attribute things to stress or caffiene or whatever...I would definitely go to a neurologist. Let us know how you go.
    • Roseann
      Roseann katebet1974

      Posted

      Hi again Kate.  I think I've now seen you on the Facebook site.  It's worth you knowing that there is another group on Facebook, also called Hemifacial Spasm Support Group (without 'International' in title).  I think that more Australians are on that site so might be worth joining?

       

  • erin22503
    erin22503 katebet1974

    Posted

    I had all your symptoms for about 5 years before they finally figured out what was going on and how to fix it.  I have had the botox, was put on anti-depressants and anti-seizure medications.  Ultimately I did have the surgery and let me tell you, it was no walk in the park, but it WORKED and I have never regretted my decision to do it!  Botox is just a bandaid for the spasms.  I found the whole proceedure to be very painful and besides the idea of never having to worry about wrinkles as long as I was getting them, I just could not see doing that indefinately.  Honestly, I'm not certain why people electively do this.  So, in my opinion, talk to your doc about the surgery and get on living your life!
    • katebet1974
      katebet1974 erin22503

      Posted

      Thanks Erin - I think that surgery is what I'm going to ask about now - knowing that, as you said, it won't be pleasant. Cheers, Kate
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