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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?

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129 Replies

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  • patty73737
    patty73737

    Posted

    Hi everyone who is suffering with hemi facial spasms. My name is Patty I live in Baltimore Maryland and recently had the MVD surgery at Johns Hopkins Hospital in downtown BaltimoreI'm happy to say that my surgery was a success I'm 15 days post up with no facial trauma at allI am so very happy as I've been suffering with any facialtremors for about 8 years now.
    • gwen90321
      gwen90321 patty73737

      Posted

      Hi Patty, I am 48 and my facial spasms started last year, but have gotten worse this year, I have occasions when the side of my mouth and my nose muscles twitch too.  I went to the hospital and they did not send me for a scan but asked questions and put it down to HFS I was told that botox is the only solution, I was due for another hospital appointment which the hospital cancelled as they do not have the staff

      at present.  I have come to my own conclusion that I will try acupuncture instead, what do you think.

    • Roseann
      Roseann gwen90321

      Posted

      Hi Gwen, sorry to but in on your conversation, but.....   I am a member of several groups and the question of acupuncture and chiropractor has been discussed many times.  The concensus is that neither is of any help I am afraid.  Much as we would all love there to be a real alternative, the only proven helper is Botox and the only total fix (80% success rate on average) is surgery.  Some people have reported a bit of success with taking turmeric paste but, again, this is by no means a proven helper.  Sorry to be raining on your parade and I do hope you find an answer in one form or another.  With very best wishes.
    • gwen90321
      gwen90321 Roseann

      Posted

      Hey Rosann,  That's my mom's name too, I read some of your blogs earlier and funny enough wanted to ask you,  thank you so much for sending me this reply and advice cause that is really what I needed to know, I really did not want any toxins in my system, but I suppose at this stage as you 'say its the  only alternative apart from surgery.  Is the turmeric paste just water and tumeric power mixed.  I will give this a try.

      Thanks once again.  

      Gwen

    • Roseann
      Roseann gwen90321

      Posted

      Hi again Gwen.  Sorry to say that my real name is Angela!  I used Roseann when I first came on this forum and when I wasn't sure if it was a problem to use my real name!  I hope you might consider joining the Facebook Hemifacial Spasm International Support Group where there is such a lot of useful information for you to consider.  It's also a very friendly and supportive group where members help one another and vent their feelings to those who really understand.  I am not an expert on the turmeric paste but understand that you need to mix powder with water and add some fresh cracked black pepper.  There's lots more info on this online and I think you need to build up the dose gradually.  I don't think it's by any means certain to help but some people have reported some lessening of the spasms when taking it.  Take care and let us know if we can be of any further help.  Always fine to send me a private message.
    • gwen90321
      gwen90321 Roseann

      Posted

      Angela, you have been a true angel, thank you so much for the info. and 

      for being there fore me.

  • patty73737
    patty73737

    Posted

    I'm home recovering now and will be for the next week and I log on this blog daily if you have any questions I will be happy to answer any questions you may have. I had immediate results and woke up in or with no more spasms. God has blessed me. I had alot of pain as far as head aches thr first 3 days. I must admit it was well worth the pain. I feel whole again. I feel beautiful and cam smile. I got botox for 5 years and the past 2 it stopped working. I had mriI had an MRI showed a swollen blood vessel tangled up in the seventh and eighth cranial nervesmirala just told me that she had a colleague of hers that did the MVD surgery his name was Alexandra from Johns Hopkins Hospital he was a very nice doctor with a wonderful bedside manner I was in the hospital for 5 days to in the ICU the worst was a bad headaches the side that there was no pain elsewhere I'm happy to say 15 days post op and I'm home with no facial spasms. if your candidate for the surgery I say go for it if your insurance will cover it what have you got to lose if you've already been getting Botox and its not working for you anymore I wish everyone the best of luck and good luck if you have questions I'll be logged on tomorrowthanks to everyone that posted because you help me decide on my surgery and I don't regret it
  • Roseann
    Roseann

    Posted

    So happy for you Patty. I too know this wonderful feeling of getting my life back after MVD. Am wondering if you also post on the Facebook International Hemifacial Spasm Support Group? They are always keen to know of different doctors and hospitals which provide a successful outcome for HFS patients.

    Please be gentle with yourself. I think that 3 weeks is a very short recovery period from this major surgery and you may need to take it very easy for at least 6 weeks. I did not feel completely better until the 3 month post surgery point.

    Wishing you a grand new life. Roseann

  • Roseann
    Roseann

    Posted

    Hi Bea

    Do hope you achieve some success with your current regime and hope that surgery will not be needed. If it should be then there is a list of doctors which members have used on the Facebook Hemifacial Spasm Support group, under FILES. I think the closest to you might be Dr Agassi in Tampa, Dr Auuron Cohen-Gladol in Indianapolis and Dr Alessandro Olivi in Baltimore. But, it's quite possible that my knowledge of the USA is not good and these guys are nowhere near to Atlanta! The recognised guru of MVD surgery in the USA is Dr Sekula in Pittsburgh - he seems to be very highly thought of and achieves remarkable success with his patients. Do hope this helps. Roseann

  • Roseann
    Roseann

    Posted

    Pleased to hear it's going well Bea and sorry about my US geography! My view, from what others have said, is that it's worth travelling to Pittsburgh if you are thinking of MVD surgery. Better the best doctor than someone close to home!

    I have also had posts which needed approval, if they contain any sort of link to another site or blog. They are usually approved within about a week so don't give up hope.

  • patty73737
    patty73737

    Posted

    Ladies I'm sorry it took me a minute to respond. I suffered many years 8 to be exact. I did the medication first. Botox for 6 yrs. So the surgery was well thought out. I suggest getting msny references on the surgeon you choose. John Hopkin Hospital in Baltimore Maryland performed my surgery. They have an outstanding reputation world wide. Please check your neuro surgeons backround..my face is totally spasm free 21 days today posy op. I look just like I did before this horrible problem. I have been praying and thanking god every day f poo r the relief I have today. I'm also praying for others who are suffering. I hope you can find some hope for relief from my post. My confident and outgoing personality is back and im truly grateful for this group and your posts and the support I have received from all of you.
    • gwen90321
      gwen90321 patty73737

      Posted

      I am so happy that you finally have normality, It is so true that this does take what confidence you have and you find yourself trying to avoid eye

      contact, the doctor said a funny thing last month, she said try not to think about it so much and so did my son, they don't understand that

      these spasms come when you least expect them you don't have to think about it for it to happen, I hope I can find a solution soon, I wonder why there are so many of us out there. 

  • patty73737
    patty73737

    Posted

    Ladies I'm sorry it took me a minute to respond. I suffered many years 8 to be exact. I did the medication first. Botox for 6 yrs. So the surgery was well thought out. I suggest getting msny references on the surgeon you choose. John Hopkin Hospital in Baltimore Maryland performed my surgery. They have an outstanding reputation world wide. Please check your neuro surgeons backround..my face is totally spasm free 21 days today posy op. I look just like I did before this horrible problem. I have been praying and thanking god every day f poo r the relief I have today. I'm also praying for others who are suffering. I hope you can find some hope for relief from my post. My confident and outgoing personality is back and im truly grateful for this group and your posts and the support I have received from all of you.
  • Roseann
    Roseann

    Posted

    So happy to hear that all is well for you Patty, also that you can recommend your surgeon in Maryland. Go gently as you continue to recover and I hope that the future will be very bright for you. It's so kind of you to pray for all others who are coping in one way or another with this condition. Very best wishes to you.

  • lilik052514
    lilik052514 sharon81449

    Posted

    Hi all.... I just joined this discussion today. I started having LEFT (under) eye twitched for almost a week now. It comes and goes... do you think I should see an eye dr. right away? I live close to Baltimore, MD... anyone knows who are good eye doctors around. I went to see Katzen group last time for glaucoma test. My husband thought of making appointment again there this time since we both don't know much about eye dr. around. Any suggestions and input would be appreciated. Thanks!!!
    • Roseann
      Roseann lilik052514

      Posted

      Hi from the UK Lily (hope that's your name!).  You would need to get a diagnosis to be sure that you've got Hemifacial Spasm.  If it is HFS then you are probably best seeing a neurologist who can arrange for you to have an MRI scan.  There is a very good Hemifacial Spasm International Support Group on Facebook and the girls from the US have lots of great info on that site under their FILES section.  Am sure they can help you with names of doctors.  Hope your eye twitches will subside naturally and not come to anything like HFS.  But, if you should have this condition, then we're all here for you.  Take care and all best wishes.
    • lilik052514
      lilik052514 Roseann

      Posted

      Thank you Roseann...u almost got it right, it's Lilik...smile Just got the appointment, this coming Monday. Let see what the dr. says.... It scared me knowing that eye twiches could lead to other problems. I was meant to let it go and wait for a month at least until I found this site.
    • Roseann
      Roseann lilik052514

      Posted

      Sorry about the name confusion Lilik!  Try not to worry about things with your eye.  The chances are it's nothing too serious and it will pass.  But, if you should need to see a neuro then please look at Patty's post above.  She had her surgery in Baltimore, MD and so is probably well up on doctors there.   All the best to you.
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