1. Community
  2. Brain and nerves
  3. Hemifacial Spasm

Hi my name is Diana I've been told in Cambridge that I have Hemifacial spasm dystonia.

Posted , 3 users are following.

diana79690
diana79690

i was told last year that I have Hemifacial spasm, I've now been referred to Professor Mark Edwards at st George's London. As I don't get any release  from them on a day to day basis. This effects my sight balance and coordination. The spasm affect the right top side of my forehead twist the left side of my face and under my chin. My voice changes and my tongue goes into spasm at times. Which can be frightening.  I bump into things all the time I miss steps and trip. I tend to wear dark glasses most of the time and watching tv as I feel this helps.

i get a lot of pain in the back of my head and feel like the top part of my body seizes up. Which is painfull.

dose anyone know know of any help with regards to my sight any tips 😊

The neurologist in Cambridge have refused me Botox as they feel it won't help.

i had to give up working as aMarie Curie Nurse after 18 years due to my inability to see and cope with the work. I still work and always will but I'm working privately as self employed. 

Although some days or most days I'm so drained and feel extremely  exhausted. But I push myself day by day.

please talk to me x

 

0 likes, 7 replies

7 Replies

  • Roseann
    Roseann diana79690

    Posted

    Hi Diana, you have my every sympathy - this sounds very testing for you and I'm sure you can use all the help and advice you can get.  I am amazed that medics are saying that Botox will not help you - it is surely worth a try?  Most of us who have classic HFS are encouraged to try Botox before progressing to surgery if that is what we want.  I think my big question to you is whether or not you have had an MRI scan and whether or not you have a compression of the 7th cranial nerve (which is the most usual cause of HFS but not the only one).  I've heard of a few people who haven't been entirely satisfied with their treatment for HFS at Addenbrookes and they have turned elsewhere for surgery.  But it sounds as if you are already being referred to London for a second opinion which is good.  I wonder if you would be able to seek a private appointment with Nik Patel at the Spire Hospital in Bristol (taking your MRI scan with you)?  He seems to be recognised as one of this country's gurus of HFS and he has a LOT of experience.  I had my surgery with him after 9 years with HFS and was thankfully completely cured - but I initially went for a private consulation before transferring to the NHS waiting list for surgery.

    Your condition does not sound to be pure HFS, especially the pain you are experiencing.  This can be associated with Trigeminal Neuralgia.  Sight and balance problems can occur with HFS but they are not the norm for most people.

    I can totally sympathise with your plight - I too gave up work as a social worker (down in Hampshire) when my spasms became too difficult.  All I would say is that it's best to remain hopeful and to seek all of the medical opinion you can.  If surgery is appropriate for you then it can give you your life back as it did for me, but it's not for everyone.

    Sorry not to be more helpful.  Please let us know how you're doing.  All very best.  Roseann

    PS  Please do also join the Facebook Hemifacial Spasm International Support Group, also the Worldwide Support group on FB.  Lots of UK members and lots of different experiences of HFS and other facial movement disorders.

    • diana79690
      diana79690 Roseann

      Posted

      Thank you so much for you support, I was told that I don't just have HFS that is why I've been sent to London. I really appreciate you advice and experience. I've looked up Mr Patel and he is my next port of call.

      when my first spasm came on they rushed me in thinking it was a stroke. The neurologist that I saw two days later at the West suffolk hospital sat on my bed and said I have no answers for you we can all pull faces.😔 I came away not knowing what path to take. Within 48 hours I couldn't open my left eye at all my speech had gone. My parents took me to Cambridge as they live near Addenbrooke's the neurologist I have been under has done several MRI and other scans all sorts of test. 

      Ive tried many different medications but this only makes it worse.

      the spasms wake my throughout the night, and the spasm in my throat feel like someone is holding my throat tight.

      like I say I go to work every day despite the fatigue the sickness and the dizzy feeling in my head.

      i feel that so much is going on at once, can one really have so much going on?

      id like to thank you once again Diana 😊

       

    • diana79690
      diana79690 Roseann

      Posted

      Hi Roseann it’s been some time since I’ve been back on line. 

      Regarding my treatment I’ve been sent to London as I’ve said I’m now being told I have funtional neurological disorder / Dystonia Professor Edwards says that one day it may put itself right. The spasms are still tight and I get a lot of pain in my head at the left side also at the base of my head at the back. I came away after have one dose of Botox to try and relax the spasm, feeling like it is something I’m doing to myself. Like it’s in my head even though it’s clear to see and to feel the spasms. He said it is such a rare rare condition. What do you think Diana x

    • Roseann
      Roseann diana79690

      Posted

      Hi Diana, it's good to hear from you but so sorry that you are still not finding much relief and that your diagnosis and prognosis seems somewhat vague.  I can totally empathise with your feelings of it being 'all in the mind' - it certainly isn't, but I had similar feelings when my HFS was at full tilt.  As a nurse you'll be a strong woman and you'll feel that you SHOULD be able to control facial spasms - I know I felt that way and it was as if I was fighting a battle with my face all the time, and losing!  I'm just wondering whether your MRI showed any compression of the 7th (or possibly also 8th) cranial nerves?  I'm sure the consultant will have looked for this but it's not always apparent even to the trained eye (or so I have been led to believe).  If there are compressions then it's possible that there is a surgical cure, but if not then I guess you have to go with the diagnosis and find a way of coping with it.  I hope the Botox will be helpful to you - some people say that one can still feel the spasms under the Botox even if they are not apparent to anyone else.  I liked Botox for a time but within about a year I found that one side of my face was too frozen and my face looked and felt asymmetrical.

      Hoping that you can keep plugging on and enjoying life, but trust me when I say that I do have some idea of how horrid all of this must be - mine was probably minor in comparison but it took a massive toll on me.  Take good care of you. xx

    • diana79690
      diana79690 Roseann

      Posted

      Thank you once again Roseann for all your support. I really appreciate it x
  • jae49881
    jae49881 diana79690

    Posted

    Hi Diana,

    It sounds like,you need surgery. I had it done two years ago and I am living my qualit life. Find a surgeon and get back your life.

    • diana79690
      diana79690 jae49881

      Posted

      Thank you Jae 

      i was a nurse for twenty two years now I feel that the NHS is letting me down. After having to leave work because of the spasms being so bad and some days I wake up with it and I don't get any release from all day I'm sure you must know just how that feels. Thank you so much x

       

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.