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A new addition to the 4000 uk sufferers!! Is it really silence?

Posted , 5 users are following.

nick05593
nick05593

I started having facial tics January 2014(age 37)  and was told by my GP it was stress, some 18 months later and somewhat considerably worse I finally got to see a consultant who instantly told me it was Hemifacial Spasm. I was given botox on the spot (three injections over and around my left eye) which for some strange reason worked immediatley for 24hrs and then everything returned to normal. I have the eye tic, my mouth pulls up, a vein in my neck potrudes when the tic occurs and I have a constant dull ache in my neck below my left ear and happily get blurred vision during tics. Dark glasses seem to help, no caffeine is also helpful. I have heard nothing back from the doctors and have seen my gp a number of times to try and see whats going on. It seems that you just have to wait in silence to finally get somewhere. I am hoping that a stronger botox injection may be helpful? Although from posts a little worried that I end up with a droopy eye, but as this is something that may happen anyway I may as well try it. Has anyone else experienced this strange silent delay in getting help? my main concern is that no one has actually investigated what is causing it and my mind wanders!

1 like, 14 replies

14 Replies

  • krnflakgrl
    krnflakgrl nick05593

    Posted

    Hi Nick! I too have what I think is HFS, but no doctor will take me seriously. If you have FB there are two GREAT communities on there. One is Hemifacial Spasm Worldwide Support Group and the other is an international one. You will find so many wonderful people and loads of information there! It's most often caused by a blood vessel compressing the 7th cranial nerve. Seek out that FB group! It will be the best thing you can do for yourself. I've gotten more info from those people than I have from doctors.. smile
    • nick05593
      nick05593 krnflakgrl

      Posted

      I will look up those pages on facebook, very helpful, thankyou
    • krnflakgrl
      krnflakgrl nick05593

      Posted

      No problem. There are LOTS of people like us! And most of them are on those pages.. Almost 2000 people I think now...
  • Roseann
    Roseann nick05593

    Posted

    Hi Nick, trust me when I say that many of us UK folk have suffered in silence for many years before eventually finding help for ourselves.  You really need to do your research and be a strong self advocate with this condition and it's really important to get yourself referred to an expert neurosurgeon as early as possible in the process.  Even if you decide that surgery is not for you, it's the surgeons who really understand HFS and how it affects every aspect of your life.  I am a member of both Facebook Groups and have been for a number of years - the International one has the best information, whilst the Worldwide one possibly has more UK members.  Have you had an MRI scan yet?  It's important to press for this because it will  rule out any other possible causes of your spasms, as well as giving a clear diagnosis of HFS (the compression of the 7th cranial nerve will be visible to a trained person who orders the correct MRI).  I eventually had surgery in Bristol (Nik Patel) after 9 years with HFS - all successful and no complications. If surgery is something that you would consider then please be sure to choose someone who has lots of experience of MVD (Microvascular Decompression) for HFS.  If it's not a personal question, do you mind saying where in the UK you are living?  There may be someone good close at hand, or it may be worth travelling to see a real expert.  In terms of ongoing Botox, it takes time to get the right dose and there can be downsides, like the whole side of your face becoming frozen so that smiling is no longer an option.  Best to build the dose very very gradually rather than going for broke and ending up frozen!  Please private message if I can be of any more help to you.  I am an old'un but there are lots of other younger members on the Facebook groups and in this group.
    • nick05593
      nick05593 Roseann

      Posted

      Thank you for taking the time to reply. When I went to my gp after realising this defo was not stress I basically told them I needed to be referred to a specialist and hurried all this along by using my private medical insurance. Trick is, after seeing the specialist who was at the Alexandra (I'm based just outside of Manchester, glossop to be exact) the treatment of botox is to manage the condition and not cure it so obviously the insurers won't cover too many treatments. I have been referred to the NHS and it appears Salford General is the best in my area. Please do say if you feel another may be of greater assistance. As for surgery, whilst my current situation is annoying you do learn to just deal with it, even laugh at it at times. So other options shall be explored before being put to the knife. I have yet to have any scans which is annoying, I thought some kind of appointment would have been made by now but if I hear nothing soon I will simply contact my insurance and request a scan. I think luckily I have been taken serious and my gp has been very helpful, its just the long wait thats annoying.
    • Roseann
      Roseann nick05593

      Posted

      Hi again Nick, thanks for your reply.  My feeling from what I've read is that Professor Eldridge at the Walton Centre is probably your nearest 'go to man', but of course there may be others that I've not come across on these forums.  I think the MRI is essential and I ended up paying for my own because my spasms never played ball in front of the doctors.  HFS is sadly a progressive condition but many people cope OK with Botox for many years; it's such a matter of personal choice whether you decide to go under the knife and very often you take this course when the spasms are making life pretty unbearable and interfering with work/sleep/relationships etc.  I didn't ever imagine that I would go for surgery but it eventually became my choice over living with the effects of HFS.  Please don't accept medication for this condition; it simply does not work and, in my experience, just causes unwanted side effects.  So pleased that you've found this group and do hope you will also join us on Facebook where my real name is Angela.
  • nick05593
    nick05593

    Posted

    Just to clarify for anyone reading this thread. The laugh about it is to laugh at other peoples comments and as I am thick skinned I can laugh it off or just reply rather sarcastically. The sometimes persistant and constant tic which effects the whole of the left side of my face is embarrassing  and frustrating and I owuld not wish on my worst enemy. Just to clarify !!!!
  • gladys39971
    gladys39971 nick05593

    Posted

    Hi Nick I am more or less like  you, and have just had my 3rd botox injection last week, worked well but now am back to very bad spasms, with my neck aching constantly, and yes sometimes I find it difficult to watch TV with the constant twitching. Hope yours will get better, and I have had loads of help and advice from the HFS International on Facebook, please check them out as they are great, and at least since then I have not felt that much alone, as in Malta there are only another 2 cases like me. Wish you the best and take care.
    • nick05593
      nick05593 gladys39971

      Posted

      Thank you for your kind words, whats refreshing is that I can actually talk to good people like yourself. A whole new world is opening up and simply talking about the things that annoy you or frustrate you to people who really do understand is a great treatment in itself!!
    • Roseann
      Roseann nick05593

      Posted

      You're right in what you say above Nick.  These forums were my lifeline before my surgery and that's why I've stuck around.  If you gain nothing else, you have a place where you can come and vent and moan and know that the rest of us will really understand.  Something I forgot to say to you in my other message is that I would advise taking a video (with your phone) of your spasms when they are at their worst.  It's s**'s law that they don't show themselves in front of the consultant and then, like me, you may end up being fobbed off or not taken seriously.  I went through x 3 neurologists before paying privately to see the expert in Bristol, who took me seriously and showed some real empathy.  Maybe see you on Facebook then.....

       

  • AyannaButler
    AyannaButler nick05593

    Posted

    Ask about high csf pressure and its relation to hfs. I got a spinal tap (lumbar puncture) to test my pressure, It was high and I was prescribed diamox (acetazolamide) and the full contractions of the left side of my face have stopped. It has only been 2 weeks So not sure if this is a cure but it has helped so far.
    • Roseann
      Roseann AyannaButler

      Posted

      I think you are the very first person on these forums to raise this possibility Ayanna.  If you are able to start a new thread on this and keep everyone posted then I'm sure it would be appreciated.  All the very best to you and really hope that this could be an answer for all of those people who can't have surgery.

       

    • AyannaButler
      AyannaButler Roseann

      Posted

      Just posted a new thread.

      Possible Cure!!! All sufferers please read!

    • Roseann
      Roseann AyannaButler

      Posted

      Thanks very much for doing that.  Not sure if you are a member of the x 2 Facebook groups Ayanna, but it would be great if your information could also be posted there.  One is called the Facebook Hemifacial Spasm International Support Group and one is called the Facebook Hemifacial Spasm Worldwide Support Group.  Whilst it's early days for you, it would be give a strand of hope to the many people who suffer this 'slow poison' of a condition.
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