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Hemifacial Spasm

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sharon81449
sharon81449

I have just been diagnosed with Hemifacial Spasms at the age of 46 - since suffering from daily fluttering in my left eye. Thankfully at this stage it is still only affecting the left eye (I have had this since May last year) and hasn't spread anywhere else. I am beside myself with panic that I am going to end up abnormally deformed and disfigured very soon as it does start to include the rest of the face. Can anyone give a complete novice regarding HFS some advice. I only got the letter yesterday and don't see my Consultant until April and I am out of my mind at the outlook prognosis and what to expect. Is it really going to leave me looking disfigured permanently?

1 like, 129 replies

129 Replies

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  • patty73737
    patty73737 sharon81449

    Posted

    Sharon.  Call Doctor Alexandra Olivi out of John Hopkins Hospital in Baltimore, Maryland.  Address is 601 N. Caroline Street.  I too was diformed for 7 years.  Started in the eye, after few years moved down to face and neck.  It was aweful and ruined my life with depression.  I did botox every three months for years.  I became immuned to the botox and it actually made my face worse over time.  The problem is internal.  Get the head scan. I had a swollen blood vessel that was next to my 7th and 8th cranial nerves.  They put a teflon pad about the size of a quarter between the nerve and blood vessel.  I have been spasm free since February 5th 2014.  Don't give up.  If it causes you chronic pain and headache and affects your vision insurance Will cover.  Have Surgery and Get your life back.  Inbox me and if you need to talk, I will give you my cell number.
    • sole4mar
      sole4mar patty73737

      Posted

      Dear Patty How long take the surgery and you took a special date rest from your work. or How many days yoiu did not went to work. Thank you

       

  • EricaBlair
    EricaBlair sharon81449

    Posted

    I was going to mention the excellent HFS Facebook support pages, which I see someone did below.  Join them! They are a mine of information.  I had my HFS in the left eye/cheek for a total of 7 years before I had it fixed.  I haven't read the posts below, but basically the only "cure" is surgery.  That's what I had done and it was 100% successful for curing my tic.  It was very debilitating to live with this condition, especially that last 3 years or so, as it only gets worse.

    The friends on the HFS FBook site are amazing and you will get a mine of information and support.  Angela Bond in particular, was and is brilliant.  She went to Frenchay, Bristol and both she and others on that site had nothing but great things to say about Dr. Nick Patel.   No doubt you have found your way around this cursed condition and explored things...and likely already spoken with Angela!

    I wish you the best, Sharon.  

    • Roseann
      Roseann EricaBlair

      Posted

      Why thank you EricaBlair for your very kind comments.  I am Angela Bond, but call myself Roseann on this site (for some silly reason that I've now forgotten!).  Great to hear you continue to do well post surgery. And of course, I agree with everything you've written here about Nik Patel and the debilitating nature of this condition.  Take care and continue to enjoy life my friend. 
    • patty73737
      patty73737 EricaBlair

      Posted

      The only cure is surgery. I'm happy you are sharing information post op. You took the words right out of my mouth! I lived seven years with it too long.  Wished I would have had surgery sooner too.  So glad I did it! Def is a cursed condition. Thank you for sharing the face book info too. :-)
  • pam16950
    pam16950 sharon81449

    Posted

    Hi Sharon,

    I would like to suggest that you see a chiropractor.

    I have had facial spasms for a very long time. I remember my eye twitching back in high school. At the time I did not know what the cause was and I never did get it checked out. It then began to get worse over time (I am now 41). I am thinking that around 12 years ago it progressed from my eye, down to the entire side of my face. I had gotten botox treatments as well but never the perfect treatment.

    What I would like to tell you that I found Chiropractic treatment helped relieve my spasms for a few years.

    I went to see the chiropractor because I was having trouble with my neck and had a pinched nerve that was causing some discomfort in my jaw. He did some adjustments on my neck and lower back. After about 6 or 7 sessions I noticed that my facial spasms were gone.

    It has been a few years now and my spasms have returned somewhat, but I am going back to my chiropractor now to try and fix the issue again. 

    I hope this can help!

    • gwen90321
      gwen90321 pam16950

      Posted

      Thanks for telling us as I really want to try acupuncture.
    • debbie1956
      debbie1956 gwen90321

      Posted

      Please let me know if you try acupuncture and what the results were. I was thinking about giving that a try myself.
    • camas
      camas debbie1956

      Posted

      I did acuponcture treatment for approximately tgree years.  It did give short term relief to the twitching, but the pain was still constant.  My hemifacial spasm (HS) lasted for approximately eight years and it is my personal belief that during this time frame that the 7th nerve in my face was damaged because the constant twitching damaged the myelin coating of the nerve.  That is why I wish that I would have contacted a surgeon that was a specialist in microvascular decompression as soon as I was diagnosed.

      When the first neurologist that I saw diagnosed me with HS he gave me medicine that is used for epileptic seizures, the medicine did not work, then he tried botox, nope.  I asked him what the long term damage that could happen to the nerve that was causing the twitching, and he avoided giving me an answer.  That is when I quit seeing him and went to another neurologist, than another, etc.  Until I finally consuted the surgeon at the U of W and got a referral from the last neurologist that I saw in Spokane.  I wish you all the best of luck. 

  • gwen90321
    gwen90321 sharon81449

    Posted

    Sharon, I started last year, I am 48, mine is the right eye.  I think we all think of what we will end up like, don't worry just cope with it day by day cause they say stress triggers it, I am new on this blogging site, but I can only say that we have to

    stay positive and try anything we think will help.  You posted your blog 9 months ago, how have you progressed?  Thinking of you, 

    • sharon81449
      sharon81449 gwen90321

      Posted

      Thanks so much for your message Gwen, we sound in a similar situation.  I have progressed a little, in that I can feel litle pulsing/twitching in my mouth, but can't see or feel the real pulling sensation that seems to accompany advanced HFS.  I have had one shot of botox so far.  Where are you at, you sound quite positive, are you on the HFS forum, it's fantastic and a real wealth of information xx
    • gwen90321
      gwen90321 sharon81449

      Posted

      Well Sharon, I started feeling the pulsing/twitching in my mouth last year, my eye is the thing that is constantly twitching it gives me a break every now and then.  I have yet to get the botox which I really don't want, I was thinking of trying acupuncture but Roseann advised me against it, she also mentioned that some people have tried tumeric paste - will check on youtube or google, I will try some alternative therapy to see if it makes a difference and if it doesn't then at least I've tried and only then will try botox.  The hospital is taking it's time about getting back to me about the

      botox anyway.  It's important that we don't let this take over our lives and maybe do an exercise class or go swimming just something to take our

      minds off our condition and at the same time something as an outlet for stress.

      Love

      Gwen 

       

    • sharon81449
      sharon81449 gwen90321

      Posted

      Thanks Gwen, I have to say, I am a lot better mentally than I was when first diagnosed, it really knocked me for six, pathetic when some people are suffering with life threatening illnesses, but the thought of waking up one day and not being me anymore just scared me to death.  Are you UK based if you don't mind me asking, I'm based in Liverpool xx
    • gwen90321
      gwen90321 sharon81449

      Posted

      Hiya Sharon, It's so good to hear that you are in a good place mentally at the moment, you are so right there are people suffering from life threatening illnesses so what we have is minor in comparison and it is scary at first because of  the thought of loosing all control and not being the same anymore. I live in Nottingham and it's good to know I've got a friend in you.   Today has been strange cause all day I have not really had a spasm, it feels wonderful.  I've not done anything different.

       

    • Roseann
      Roseann gwen90321

      Posted

      Sorry to but in yet again Gwen.  Just wanted to say that there is at least one other person from Nottingham in the Facebook group, in case you need a local contact.  So pleased to hear you've had a better day with the spasms.  They are unpredictable little devils, aren't they? !
    • gwen90321
      gwen90321 Roseann

      Posted

      Oh I'd better get on facdebook pronto, ta for that, they sure are unpredictable.  How was your day Angel?  Hope you had a good one.

      So you didn't tell me how are things with you at the moment, do you

      sometimes get spasms or are you back to normal now that you've had

      the op.

       

    • sharon81449
      sharon81449 gwen90321

      Posted

      Very unpredictable, I was in right state when first diagnosed, Angela was my saviour and really helped me.  I still get into panics when I am having a bad day, but trying to stay positive and hope I'll get somewhere.  Currently under Walton in Liverpool for treatment, but having trouble getting referred for operation right now, but I won't give up!  Good to meet you Gwen, please keep in touch xx
    • Roseann
      Roseann gwen90321

      Posted

      All very good for me thanks Gwen.  My spasms stopped completely six weeks after surgery and I haven't had any since.  I get the occasional flutter in my eye but I refuse to think it's coming back; just tiredness usually.  I am doing normal things again and met a friend in Bath yesterday; I would never have done this when my spasms were at their worst.  Hope things will remain a bit calmer for you; just remember there is always hope of a cure eh. 
    • gwen90321
      gwen90321 Roseann

      Posted

      OMG Angel, what a remarkable change, it's great the things are back to normal cause I'm sure at it's worst the thought of going out was not at the

      top of your agenda, I have that to come but my mind is telling me to fight

      it taking over.  Thanks for the well wishes, I also hope that this is not the calm before the storm. I will hold on to that thought and hope for a cure.

      Love

      Gwen

      You really are an inspiration as all we new comers have someone to turn to for advice. We really appreciate that Angel.smile

    • Roseann
      Roseann gwen90321

      Posted

      Thank you Gwen, and I must assure you that I am no angel!  I shall look forward to hearing how your battle with HFS is going; it's a remarkable bond that we all have through this nasty little condition.  All best to you and yours.biggrin
    • gwen90321
      gwen90321 Roseann

      Posted

      Somehow it's a blessing in disguise hey? I think it's wonderful that we can bond so well at times like these.  Thanks Angela.  Take care till the next

      time.

    • sharon81449
      sharon81449 gwen90321

      Posted

      Hi Gwen, thanks for your messages, apologies to everyone for being so lax in replying but my account got locked as I kept putting in the wrong password.  I haven't been feeling too good of late, been panicking that things are going to worsen and generally feeling sorry for myself, it didn't help that the hospital mistakenly discharged me and has delayed my treatment, but trying to be positive, I was really ill with anxiety over this earlier in the year and I am determined not to go to that place again.  Hope you are well Gwen, Angela is fab isn't she x

       

    • gwen90321
      gwen90321 sharon81449

      Posted

      Hi Sharon, sorry my love had exactly the same problem as you forgot my password will write it down. I'm so sorry that you've not been feeling well, yes stay positive and generally don't left it get you down, easy to say. I can only imagine what you are going through.  I'm fine thanks the eye does it's thing when you least expect it but hasn't been too bad, I 

      went for my 1st acupunture treatment today, the whole way I kept thinking anything is worth a try, my botox was put forward for the 4th Feb 2015, maybe during this time and after spending loads of moneyI 

      will find out what good this acupunture will give. I hope you've been getting out of the house and trying to do things as normally as possible. You are so right Angela is a tonic.  I'm  always here for you Sharon please remember that.  Love  Gwen xxx

       

    • gwen90321
      gwen90321

      Posted

      Sorry not sure why my computer keeps putting out stuff like I'm writing poetry or going mad.rolleyes
    • Roseann
      Roseann gwen90321

      Posted

      Hi again Gwen and Shaz.  Been feeling a bit down in the dumps lately and seeing your very kind words has brought the smile back to my face.  We all need a stroke occasionally and yours has come just at the right time, thank you.  Keep fighting the good fight you both and know that your Auntie Ange is here to help if ever I can.  I'm just a bored old woman and enjoy feeling useful.  Lots of love, Angela x

       

    • gwen90321
      gwen90321 Roseann

      Posted

      You old, I'm sure you're talking about someone else, we love you Ang,

      glad we brought a smile to your face on a day like this, tomorrows another day girl! Will keep fighting, would be nice if we lived closer, but never mind,

      if you need to chat you know where I am. Love ya!

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