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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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  • barb_99377
    barb_99377 sharon81449

    Posted

    Hi, I have had HFS since I was 45 I am now 56... I know how frustrating it is. I can not have surgery so I have tried everything!! I do get Botox injections and sometimes it works better than other times.

    I have tried acupuncture..twice and it did not work.

    I take Chinese herbs, and Magnesium,niacin and try to stay hydrated .i do yoga everyday that I can.

    I have noticed that bright lights will set off spasms. My HFS has spread over the last 10 years... I hope yours will not.

    Good luck!!

  • robert78247
    robert78247 sharon81449

    Posted

    Hi Sharon, My name is Bob from New Jersey.Back in the year 2002,I had 2 MVD's performed in a  3 1/2  month span of time basically because the first attempt was an outright failure.This failed operation was completed in Philadelphia (I prefer to keep the name of the hospital out of this discussion because by this time they may have cleaned up their act.) The second operation was done successfully at UPMC in Pittsburgh Pa. by Dr. Amin Kassam and his very skilled partner Dr. Horowitz.Two neurosurgeons working in concert increase the chances for a successful outcome. According to Dr. Kassam, an operation of this scope and magnitude is so intricate and delicate that having two sets of eyes on the patient is much more preferable than one set because, invariably, problems (major and/ or minor can and do arise), especially if you are a "redo " as I was ,and probably was the main reason that I was on the operating table for more than 4 hours. As I'm reading these posted entries ,I am noticing that very little mention is being made of the EXTENSIVE amount of testing that I feel should be conducted in order to pinpoint precisely the root cause of the problem so that the correct procedure can be formulated and followed through. In my case all that was required in the hospital in Philadelphia was the good old MRI; (get in, ,get done and get  on your way in a grand total of 4 days -start to finish !Whereas in Pittsburgh, it was a 10 day odyssey The first 4 days involved a very important series of tests and interviews,the results of which were reviewed,discussed and gone over very thoroughly so that the patient was very much aware of his or her status and any and all questions were answered to the patient's satisfaction.With respect to the Botox treatment,UPMC requires that you be BOTOX FREE for 1 full year because the presence of this neurotoxin can and does inhibit and interfere with  some testing that is performed while the operation is in progress.This extra testing is one more step that is taken in order to make sure that no stone is left unturned and the rate of success is consequently  that much more enhanced.Another item that I would like to reference is the pre-op list of medications (mostly blood thinners as I recollect) that they issue to you.In my case, I followed their instructions with respect to the medications ,but did not cut out the herbal supplements which almost resulted in my operation being postponed and me being sent back home for 2 weeks.Luckily I passed  their blood coagulating test and the operation was able to proceed.Another point that I would like to make is the follow up research statistics that I have reviewed show that the older you are,the more likely it is that the success rate is going to move on a downward slope. So don't put off until tomorrow what you can get done today.I also noted the use of a "tumeric paste" in order to alleviate the twitches and spasms .Be careful if you have gallstones because it is my understanding that the two don't mix .I think that if I had to do this all over again ,I would have researched the top neurosurgeons in the field selected one & contacted at least 5 or 6 of the patients that this neuro worked on. Then I would have undergone all of the extensive testing and then consulted with the individuals who administered the tests,had all of my questions answered and finally arrive at a decision.I think what helped me the most in my decision making process was contacting Dr. Kassam 's former patients and discussing with them ,at length, how their procedure went. Anything worth doing is worth doing right,so if you have to put some mileage on in order to find the right specialist go for it. Remember - "Have twitch,will travel ".
    • Roseann
      Roseann robert78247

      Posted

      Hi again Robert.  This is SUCH A GOOD WRITE UP and so informative that it deserves its own thread.  I wonder if you could start a new thread with an appropriate heading (such as 'Hemifacial Spasm - Thinking About Surgery? - Important Information'.  I am sure many people, particularly those in the US, would benefit from your knowledge and experiences.
    • robert78247
      robert78247 Roseann

      Posted

      Hi Roseann, It's Bob again from New Jersey. Thank you for your kind remarks;they were very much appreciated. This is my first experience with this type of forum and it has proven to be very satisfying and at the same time enlightening, and I hope that it has proven to be helpful to any and all who might be contemplating the MVD procedure.In my last entry I neglected to identify the very important and extensive pre-op testing which included a BSER( brain stem evoked response);SSEPC (somato sensory evoked response);EMG(electromyogram ); A very thorough history and physical;Some audio testing;and finally the regular pre admission testing.(and lest I forget some balance and equilibrium testing.)All of this testing was the biggest difference between my successful outcome at UPMC in Pittsburgh and the unsuccessful one in that famous unnamed hospital in Philadelphia. I was aware of UPMC's testing protocol when I was doing my research but very surprised and at the same time alarmed that the medical office assistant in Philadelphia was clueless with respect to the majority of these important tests that I asked about. She simply stated that "We don"t do those tests here." She even asked me if  I had a medical background! Again this was my health insurer denying my appeal to have the operation completed at UPMC and forcing me to stay inhouse and have it performed in Philadelphia.

       Think about it for a minute- Philly- very little pre-op testing , a total of 4 days  in and out the door  and a totally UNSUCCESSFUL outcome. UPMC - a grand total of 10 days 4 of some very extensive testing ,the operation itself on the 5th day,followed by 5 days of rest and recovery and a totally SUCCESSFUL outcome! I  listed my phone number here in the States in an earlier forum and I had the opportunity to speak with a husband and his wife in Dubai. It seems that his wife had the surgery completed only to have the condition reoccur .When they consulted with the neurosurgeon in charge of the operation they were told that this is it and that nothing more could be done ! Based on my own personal experience ,nothing could be further from the truth.My younger son told me that I am now on a terrorist watch list because of that phone call,but helping others with their concerns is more important to me than my name and number on some watch list. I noted the list of neurosurgeons on an earlier post and both Dr. Amin Kassam and Dr. Michael Horowitz have my unqualified endorsement.They were both very instrumental in restoring me to an earlier ,twitch free stage of my life.I've also heard some very ringing endorsements for Dr. Sekulow in Pittsburgh.Well,it's about 10 degrees outside (wind chill below zero and my little Bichon Schitzu ,Charlie, is indicating to me that it is time for his nightly,nine o'clock venture into our first real good Arctic blast of the winter.He has no qualms about the cold,the snow or the ice whenever they decide to make an appearance .So in closing I wish you a Happy,HEALTHY,New Year!.Take Care.

    • Roseann
      Roseann robert78247

      Posted

      Hi again Bob and thanks for all of this info which I know others will find very illuminating, particularly those in the US who are considering surgery and weighing up their options.  Your comment about a terrorist watch list is hilarious - I reckon the CIA would be very busy if they monitored everyone who calls a number in an Arab state!  And thanks for the forewarning of the Arctic conditions which might come our way eventually on the other side of the Pond - we have had the warmest winter for a very long time and it's about time for the cold snap.  Take good care of yourself, stay happy and stay healthy.  All the very best, Roseann
  • carol10149
    carol10149 sharon81449

    Posted

    Hi I've just joined the group and would be very interested in how you are coping with your hfs.Mine started nearly 2 years ago and it has progressed down my face.After seeing a consultant I was put on medication but ended up in hospital with drug induced liver damage.Just don't know what to do now Thinking about the operation,but wary.Hope you don't mind me asking
    • Roseann
      Roseann carol10149

      Posted

      Hi Carol, I'm not sure if Sharon is still active in this group but am sure she'll respond if she is.  Just wanted to say that the experts do not recommend medication for HFS and only a few people seem to get any relief from taking medication; so sorry to hear of your problems with it!  If you are not already a member of the Facebook Hemifacial Spasm Internation Support Group then I would recommend you join it - there is  LOT of very helpful information there, as well as helpful members.  I'm sure you're already aware that Botox is usually the first 'band aid' helper for HFS but it's certainly not a cure and comes with problems of its own, particularly when the cheek and mouth play a part in your spasms.  I did medication, botox, acupuncture, chiropractor etc before deciding to go the surgery route in Bristol, UK in 2013.  I was 62 at the time and very afraid of surgery, but it turned out to be uncomplicated and the best thing I've ever done.  It does come with risks but those risks are lessened if you choose a very experienced and successful surgeon.  So, if you should decide to have surgery, please don't 'go local' for convenience, find yourself the best man/woman for the job by doing lots of research and asking lots of questions.  Hope this helps!
    • Roseann
      Roseann

      Posted

      Sorry, that should have read International Support Group in the post above!  There is also another Facebook group called the Hemifacial Spasm Worldwide Support Group which has a lot of members from the UK, but possibly has less good information than the other group.  I am a member of both these groups and the support helped me to find the courage for surgery (along with great members of this group too).
  • einstein234
    einstein234 sharon81449

    Posted

    I am 26 and live in Nigeria, never knew about HFS until two hours ago

    when i had some weird facial spasm.

    I was talking to a friend when i suddenly felt my eyes twitch and the corner of my mouth make some involuntary movement on the left side of my face.

    I assumed it was just my mind but few minutes later it happened again and again. I was worried and discomforted so I quickly googled it.

    I would like to think am too young to have such but i am yet to see any convincing article that suggests that.

    Could it have a connection with stress? I had barely 4hours sleep the night before because i was working on a project through the night. I am really worried, I dont think there would be much medical help for this here in Nigeria

    Is there alternative treatment or exercise that could help? Already i am taking alot of deep breaths to relax my mind.

    • Roseann
      Roseann einstein234

      Posted

      Hi Einstein.  I don't think you need to worry too much at this stage.  It is probably not HFS, just tiredness and stress.  A lot of people experience this in such circumstances.  However, if the twitching continues for a few weeks it is worth getting it checked out.  Most people are older when they get HFS but some younger people do also get it.  I hope this is just a temporary blip for you.

  • michelle68554
    michelle68554 sharon81449

    Posted

    Hi Sharon. I just started this one week ago. And I just got back test results that show my adrenal glands are not functioning properly. I was told these tie into the pituitary glands and see where pituitary tumors can cause similar problems. I was wondering if anyone knew of this could be a cause of the spasms
    • Roseann
      Roseann michelle68554

      Posted

      Hi Michelle.  Just to say that I have read some research (I think entitled Atypical causes of Hemifacial Spasm) that covered pituitary tumors as a rare cause of Hemifacial Spasm.  You might be able to find this by doing a Google search?  I am sure you're keen to get a full diagnosis and all the tests you need to sort this out.  All best wishes, Roseann

  • Mrse
    Mrse sharon81449

    Posted

    Hi I am also 46 and had hfs for 2 years but right now I've had enough... my left eye twitches,my cheek,my mouth and my neck also effects my ear too so fed up and it disrupts my sleep also have lots of headaches. I have Botox for my eye but havnt had any for the rest of my face. Been offered diazepam but will it help can anyone help thank you 😊

    • Roseann
      Roseann Mrse

      Posted

      Hi Mrse, so sorry that you're totally fed up with HFS - it is such a debilitating condition and I remember feeling as you do now.

      Diazepam might help your sleep but it will not stop the spasms.  There is no known drug that stops the spasms unfortunately and surgery remains the only potential cure.  One or two people seem to have found the Keppra helps their spasms a little bit but generally antiepileptic drugs don't do much good, sorry.

      Hope you will find a way of coping.  All best wishes.

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