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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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  • Rjg281812
    Rjg281812 sharon81449

    Posted

    I just ran across your post. How is your HFS? I'm sure you have learned a lot since this post. I just want to let you know that it's not the end of the world. I had hemifacial spasms for 10 years. It got severe to the point I was wore out with it. This past Tuesday, I had a procedure called Microvasular decompression. It's the only thing that can cure the problem. Don't go for the Botox. You will eventually want the surgery because you won't like the spasms 24/7. I just found out by my neurosurgeon that Botox permanently kills the muscle. I was told it wears off but the Botox causes damage and makes some facial muscles weak permanently. Long story short, you will thank me because no one tells u this and I learned exactly how much my past 5 neurologist DId not know! I had my surgery Tuesday and I woke up spasm free!!!! It's a miracle what they can do! If you have questions or concerns u can ask me anytime. God bless you and I hope you r doing ok.
    • Ruben1978
      Ruben1978 Rjg281812

      Posted

      Congrats. I just had mine about 10 days ago and woke up spasm free too. Still recovering, but you're correct surgery is the real solution, everything else is just a bandaid. Tried all the natural stuff and avoided the botox because I was actually informed about the long term effects. I went straight to surgery with zero regrets. The recovery while painful with just tylenol was hellish but got through the worse already and my face is once again normal when I smile, talk, eat or whatever. Wish people weren't so afraid of the surgery. I think this procedure has been improved dramatically over the last decade.
    • Rjg281812
      Rjg281812 Ruben1978

      Posted

      Did you have bad headaches after surgery? If so, how many days. I'm on my 5th day and I hurt like hell. My head feels like it's going to explode and I have a very bad ear ache. Worse headaches I ever had. Please tell me I will get relief soon.

       

    • Roseann
      Roseann Rjg281812

      Posted

      Hi Rjg, please be careful with this headache.  If it really is the worst headache ever and it is not responding to medication then it needs to be checked by a doctor - they may give you steroids or do further tests to check that there is no leak.  If at any time you have clear liquid coming down your nose as well then it is VERY urgent to see a doctor because this can be a sign of a spinal fluid leak.  I would DEFINITELY consult the surgeon if this headache is not better by today.  Good luck to you and hope you feel better soon.
    • Rjg281812
      Rjg281812 Roseann

      Posted

      Thank you for your quick response. I end up having my wife call the Dr. I was having anxiety and my blood pressure was very high. I was able to take an axiety pill and took an extra clonidine and it eventually got under control. I swear I thought my head was going to explode. I quit taking the pain meds late last night because I feel that was causing the bad headaches. Anyway, so far so good but I am using Ibruprophen as needed (about 300mg). I know they didn't want me using it right after surgery but it works better  and I don't feel like I'm going to die. You gave good advice on signs to looks for. I appreciate it. Thank you again.
    • Roseann
      Roseann Rjg281812

      Posted

      Pleased to hear that things are under control again for you, that's very good news.  I think there are stronger painkillers (I had co-codamol which is a mix of codeine and paracetamol in quite a high dose) for the first 3 weeks and it worked well.  Glad to hear that you are feeling less anxious too.  In a couple of weeks you will almost certainly feel much much better and the headaches should be almost gone.
    • sole4mar
      sole4mar Roseann

      Posted

      Hello, just a question this is an in an out surgery , how long it take and how many days you are not working? Thank you!!

       

    • Roseann
      Roseann sole4mar

      Posted

      To answer the above question....   Not 'in and out' surgery.  This is major surgery and needs a lot of respect in terms of recovery time.  I think the average would be 3-5 days in hospital then 2-6 weeks recovery at home.  Full energy levels are not full regained until perhaps 3-4 months post surgery.  But, we are all different and each surgeon has a slightly different take on number of days in hospital etc.  This surgery does carry risks, but, with a very experienced surgeon, 80-90% of patients can expect to be spasm-free within about 6 months or less.  I am very pleased that I had the surgery here in the UK.
    • miletskey
      miletskey Rjg281812

      Posted

      hi i was diagnose with a mild left hemifacial spasm a month ago and just wanted to ask you if you experienced numbness on your left leg and left arm
    • camas
      camas miletskey

      Posted

      Good Evening,

      No, I never experienced any numbness in any part of my body.  My left hemifacial spasm started with a little twitch in my left cheek and progressed pretty rapidly.  It started to control the left part of my face by making my lip twitch up toward my left eye and then progessed to make my left eye twitch down toward my lip snd mske my left eye close.

      If your "mild" hemifacial spasm starts to affect your trigeminal nerve I recommend that you see a neurological physician that specializes in microvascular decompression.

      I lived with the constant twitching and pain for eight years.  I went to at least seven differnt neurologists in Spokane to get it repaired, but all of them only prescribed medicine, botox, etc.  I finally got tired of their BS and contacted the University of Washington Medical Center (UWMC).  I'm suggesting that you get proactive.  Hemifacial spasm controlled my life for eight years and would have contolled my life longer if I had not contacted UWMC.  Ask your physician if your "mild" hemifacial spasm will subside and go away, or will it get worse.  If your physician won't give you a straight answer ask them to give you a referral for a second opinion to a neurological surgeon that has a background in performing microvascular decompression.  Good Luck, My thoughts are with you.             

    • Roseann
      Roseann miletskey

      Posted

      Hi Miletskey, it is not normal to have numbness in arms and legs with Hemifacial Spasm.  This may be unconnected or be a symptom of a different diagnosis altogether.  An MRI scan is useful for having a clear diagnosis and ruling out other causes of your facial spasms.
    • miletskey
      miletskey Roseann

      Posted

      Thank you Roseann and Camas...Thank you for all the informations.  I acutally felt the twitching just on my left eye like early 2015  my regular doctor said it's probably just stress because the twitching comes and go and advised to just massage so I did.  Then around June 2015 I felt the twitching every single day and the twitching are on my left eye, upper lip and chin then  I decided to see my regular doctor again and she referred me to a neurologist.  Neurologist requested a brain MRI to rule out  tumor or aneursym, results came out negative and that's when she diagnosed me with HFS  and recommended to have botox ASAP and I'm like no I would like to seek a second opinion.  My regular doctor referred me to another neurologist and my new neurologist went over my MRI and also diagnosed me with mild HFS and prescribed me vimpat 50mg 2x a day which seems to be working. The numbness on my left leg and arm are new really worried about them.  I am seeing my neurologist again this week for follow up and will bring up my numbness.  Thank you again for all informations.

       

    • gnat
      gnat miletskey

      Posted

      Hi

      I recently found this site.

      I have spasms, numbness and nerve pain only in my left limbs. And have had the twitching and spasms in my face.... Had all the tests and no diagnosis. Seen 2 Neurologists, going to a pain clinic, seeing a physiotherapist.

      I was starting to think I was the only person on the planet like this.

      I hope you are getting by ok! I get what you are going through!

  • Bman
    Bman sharon81449

    Posted

    I experienced muscle twitches for years, in both of my eyelids (could last for weeks) and all over my body.  Absolutely drove me nuts! It was not due to illness or disease, maybe stress, maybe reactions to something in my diet.  I finally found relief - for real - with a dietary supplement that contained a variety of time released magnesium compounds along with a special form of Vitamin B6.  I know this sounds corny, or like a sales pitch ... but it works! Worth checking out.  Its called Muscle Modulator and I order it at stoptwitch .com  Lots of useful info on causes and treatments of muscle twitches. 
  • fallon
    fallon sharon81449

    Posted

    I can only tell you how mine has progressed. I don't think you will wind up severely disfigured but for me, the spasms have gone from jusy a flutter in my right eye to a full on strong eye twitch to now involving all facial muscles on the right side of my face. I would think it would be unlikely that both sides would become involved but you never know. The worst part for me is the embarrassment when I am talking to people as well as headaches and trouble sleeping. I also feel like I am more irritable. Hopefully you can make it until April. I have been dealing with this for close to 4 years. I go see a neurosurgeon in a few days and am praying for MVD.
    • Roseann
      Roseann fallon

      Posted

      Hi Fallon.  Your progression sounds very typical and similar to my own.  HFS punches well above its weight in the way it affects every aspect of your life and only those of us who have it or have had it can truly understand.  Wishing you the very best for your appointment with the neurosurgeon (who are you seeing by the way?).  I'm sure he or she will be able to help you, but make sure you are confident that he or she has a LOT of experience of this precise surgery (MVD for HFS) with a good (over 80%) success rate.  Please keep us posted on how you're doing.  All the very best, Roseann
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