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Does everyone's HFS seem to progress differently?

Posted , 5 users are following.

jessica_59892
jessica_59892

Curious as to how most HFS sufferers progress. I have been suffering with this about a year now and mine seems to be progressing very quickly. It has started in my eye to my nose area and now my cheek. Just wondering if this is typical as I've read that it can take years to progress like this. 

Also my neurologist has set up an EEG test has anyone else had this test suggested?

Thanks in advance!  

0 likes, 26 replies

26 Replies

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  • april417
    april417 jessica_59892

    Posted

    It's April again. I showed no compression. I did have severe HFS with tonus phenomenon. Please find another Dr. Yours is progressing quickly. I would hate for yours to get as severe as mine did. I was a worst case scenario. sad
  • ed_92085
    ed_92085 jessica_59892

    Posted

    Hi Jessica,

    I think amongst factors that are common to all HFS folks is the site where it all begins ie the eye, and where it will ultimately  spread to - the neck ( via cheeks and mouth) The time it takes to complete this "progression" does seem to vary a lot between individuals. In my own case it took thirteen years to reach the neck.

    I do feel for you being so young at the onset of this condition which typically affects people in middle age. My own HFS started when I was in my early thirties, and I can understand how this adds another layer of difficulty and frustration for you on top of what you are already experiencing. I used to dread my botox clinic visits as I was the youngest person there by at least twenty years and this added to isolation and self consciousness. I absolutely understand the "age factor". Keep positive, because if you think about it your relative youth is also a strength as it gives you more time and energy to get to grips with this condition and ultimately overcome it.  You are asking all the right questions, and I think that this demonstrates that you are on the road to getting through this a lot quicker than you would if you quietly accepted it.  Keep positive !

    • jessica_59892
      jessica_59892 ed_92085

      Posted

      Thanks ed I truly appreciate your comment. I have been told many times I am far too yound for this and it is very rare for someone my age. Very frustrating I'm sure as you know! Did you receive surgery? If not how do you manage day to day? 

      I'm just a sponge for any advice right now. 

    • ed_92085
      ed_92085 jessica_59892

      Posted

      Hi Jessica

      Finding out all you can is definitely the way to go. Ignorance isn't bliss, but knowledge certainly is power and knowing as much as you can diminishes the "fear factor". You'll find that you become more knowledgeable than many medical practitioners! 

      In answer to your question, yes I did receive surgery, but I left it a very long time before considering it- and it was only after putting up with a very gradual deterioration in my condition that I went down this route. Things became very difficult when it reached the "endgame" ( In my case, face pulling very severely much of the time) and it was at that stage that I felt I had no option but to have surgery. I came to feel that anything was better than how i was feeling.  Managing day to day now is a case of enjoying having my face back-as well as adjusting to a different life, but prior to surgery, I think I just drew on sheer guts and determination ( too much as I left it far too long to have the op). It really is mind over matter with this condition. Obviously, speaking from where I am now, I'd have to be a keen advocate for surgery, but everyone has different circumstances- I believe your'e in the US, and it sounds like there are more barriers in the way of accessing this, although I know that there are some good experienced surgeons in that country. ( and here in the UK)

      Looking back, I wish I'd been less introverted and ashamed of the whole situation and talked about it more rather than it being an "elephant in the room" and this may have kept stress levels lower. My wife told me after I'd had the op that she used to avoid the subject altogether as she knew it was such as source of unhappiness for me-so this added to the isolation. So talking about it and being open may help.I think you have kids? Mine didn't judge me and had only known me looking like I did, but I probably should have been more open with them too about my feelings and the way HFS affected my mood and self concept.

        Naturally, this condition is closely associated with stress and it's likely that this doesn't help with the symptoms, so you get a kind of vicious circle effect here.

      You are young.This can add to the isolation or be a source of additional strength depending how you view it. Or to steal a line from Hamlet. "There's nothing good or bad but thinking makes it so..."   Everyone is with you all the way.

    • jessica_59892
      jessica_59892 ed_92085

      Posted

      Wow Ed thanks for such a kind response. It really mean a lot to me. I have too every introverted about this situation as it can be very embarrassing at times. I just know surgery for me is the only way to go. I do have children a 9,8,and 5 month old. So I need to be able to give them my best and at times this really consumes me and affects my mood and overall happiness. 

      As far as the stress factor goes I have heard varying options about stress affecting this. It does seem to play a part in mine and I in fact truly believe it may have caused mine to begin. In the last few years I had some very trying times and began facing some real anxiety and it seems to have all started after that. I show no compression or loop and it just seems like stress could've been the culprit. Who knows really. 

      Thanks again for your advice and kind words. 

  • april417
    april417 jessica_59892

    Posted

    I'm glad you're going to contact the surgeon. Since it took me so long to find someone to help me and HFS causing stress and anxiety, I resulted in having some mini strikes that I was not even aware I had until the last MRI prior to surgery. White lesions showed up. Other Dr's thought MS,  brain tumors, etc. Finding the right Dr sure is key. The white lesions (mini strokes) were caused by the spasms so surgery was necessary to avoid any more strokes. I'm not trying to scare you. But wanting to make sure you understand the importance of urgency finding the best Dr fir you. Good luck! 
    • jessica_59892
      jessica_59892 april417

      Posted

      Wow Roseanne what a blessing you received the surgery free! Health insurance right now in the us isn't exactly perfect and I'm thinking it's going to be next to impossible for me financially bc I so not have the best health insurance at all. I will still do everything in my power to get it down though. 

      April I definitely feel the urgency I do not want to progress anymore whatsoever and will be working on figuring this out. 

      I will keep you all updates and I'm sure be asking many more questions! 

  • Mary17679
    Mary17679 jessica_59892

    Posted

    Yes, I've has EEG tests, but they did not show any neurological reason why I have nervous tics.

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