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New to this.

Posted , 3 users are following.

sarah_jayn50541
sarah_jayn50541

Hi. I'm new to this hemis facial spasm diagnosis having suffered for the past 15 months which is not long in comparison to some of the cases I've read here. I'm wondering if anyone has had MID in the Cardiff area?

1 like, 7 replies

7 Replies

  • Roseann
    Roseann sarah_jayn50541

    Posted

    Hi Sarah Jayn, Sorry to hear you've joined this club that no one particularly wants to be a member of!  HFS is a horrid condition and can make you feel particularly embarrassed, isolated and depressed.  I had it for 9 years before having surgery in Bristol which of course if very close to Cardiff, but sadly in England not Wales!  I've heard of other people in Wales who have had great difficulty getting funding to cross the Severn Bridge but, from where I stand, it's well worth persevering in trying to get this funding.  My surgeon was Nik Patel and it's possible to see him privately or on the NHS.  He cured my problem and I shall be eternally grateful to him for this.  He is also one of the few doctors/surgeons who really seems to understand the impact of this condition on one's quality of life.  Please let us know if you need any further information, and please don't just settle for the local surgeon if you do decide to go this route.  It's a big surgery with plenty of risks and needs the utmost respect in terms of who you might allow to do it for you.
    • sarah_jayn50541
      sarah_jayn50541 Roseann

      Posted

      Hi Roseann.

      I've been researching this condition since my diagnosis and it sounds like surgery is the best option. I've had 1 treatment of 3 botox injections but to be honest I haven't found it much good. Also reading up on things it appears that with prolonged use botox can cause nerve and muscle damage which in turn results in the surgery being less effective. I've sort of decided that the best option is to by pass any further botox and opt straight for surgery. I am so glad you answered my post. I need to speak with someone locally who as experienced this and Bristol isn't far from me at all. You are so right, this thing is totally depressing andembarrassing, I hate it with a passion. I have an appointment with the neurologist 23rd June where I'm meant to have my 2nd botox treatment but I'm not having it and planning to discuss surgery instead. Did surgery instantly stop your spasms? X

    • Roseann
      Roseann sarah_jayn50541

      Posted

      I think you're right.  Botox works well for some people but with me it caused one half of my face to completely seize up in a sort of frozen look, especially when the mouth started to join in the twitching party and need Botox.  Have you had an MRI scan I wonder?  It's important to have this just to rule out any other possible cause of spasms.  Also, do you have NHS choices in Wales?  In England I know that we can opt for whichever hospital and consultant we choose, but I gather that Wales can be difficult.  Surgery is a big deal and many neurologists will try to put you off by over emphasising the risks.  I was 62 when I had it and thankfully I came through it with no complications.  My spasms stopped exactly 6 weeks after the surgery and have not come back 2 years on.  The most important thing is to choose the right surgeon and this means someone who does LOTS of these surgeries specifically for HFS, and over a long period of time.  Nik Patel has done over 500 and quotes an 80% complete success rate; but I suspect from what I've read it may be more than this when people's spasms get better at a slightly later time.  I had and have complete faith in him, and I consider him to be risk averse, thank God!  Not sure if you are on the Facebook Hemifacial Spasm International Support Group, or Worldwide Support Group?  Loads of good info and people from the UK on both.  Please private message me if you would like a copy of my post MVD diary or my questions to the surgeon pre-op.  Take care, and I certainly know how nasty HFS can be. 
    • sarah_jayn50541
      sarah_jayn50541 Roseann

      Posted

      Roseann I would love to see your post op diary and also the pre-op questions if you wouldn't mind. When you say to private message you do you mean on Facebook or on here? Sorry but I'm not that familiar with this site yet. I have had a MRI scan, 2 weeks ago today but yet to hear any results so I'm hoping that's good news in that the spasms are not a result of anything more sinister
    • Roseann
      Roseann sarah_jayn50541

      Posted

      Hi again Sarah Jayne.  Just to say I sent my stuff to you by e-mail so hope it arrived OK and also that you're feeling much better now.
  • ben28938
    ben28938 sarah_jayn50541

    Posted

    Hi Sarah,

    Sorry to hear that! I have had this HFS about two years, at first I feel it happens only from my left eye, but now seems getting worse...but I believe that all of us can come across this!

    As am not local so cannot answer you the question, hope someone here can help!

    Ben

    • sarah_jayn50541
      sarah_jayn50541 ben28938

      Posted

      Hi Ben

      Sorry to hear your spasms are worsening, unfortunately it appears that this is part of the course and is certainly my experience.

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