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Hemifacial Spasm

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Guest
Guest

I have had a right side hemifacial spasm for nearly 4 years (starting at the age of 45) and it is starting to get me down. I have had regular botox injections for the last 3 years but even though they help with the spasms, I can still feel the ‘pull’ of my face. I work in a primary school and have to read stories to children in the class which fills me with dread because I have to sit facing them and am aware that they are looking at my mouth which turns up when I speak. I also hate having my photo taken as I always appear to have a ‘twisted smile’ which is most embarrassing. Has anyone’s spasms got better over the years or are they still the same or worse? Has anyone had a successful MVD surgery and if so did you have problems getting the consultant to agree to the operation? It would be good to hear from other sufferers who feel the same as I do![size=18:688d04b647][/size:688d04b647]

0 likes, 3 replies

3 Replies

  • sean_thornton
    sean_thornton

    Posted

    Hi,

    I am now 50yrs and sarted having right side hemifacial spasms, the very same as yourself.

    I have been getting Botox ow for a few years, more and more each time, I'm now thinking the doctor does not know what he's doing !!

    Last time (2 months ago), he even injected my neck under the side of my chin, as I explained my facial 'pulling', I'm asking for a re-assesment next time round (1 month).

    I know exactly how you feel, trying to shy away when you smile etc, it's the most annoying damn problem, I wish someone would come up with a cure.

    As for surgery, well, I'm a tad scared of the side effects, quite serious in some cases, so I'm hoping to carry on with the Botox, and see if my Doc can administer it in the right area, my first Doc in Edinburgh was better,but I moved to nearer home, maybe go back to him.

  • Marble
    Marble Guest

    Posted

    Hi Sean. I am 55 yrs old and suffering the same as you.  It is so embarrasing and affects my life terribly.  Did you ever get a resolution? I am at my wits end!

    Thank you.  Mark

  • clh
    clh Guest

    Posted

    I had two mvd surgeries , one April of 2012 and then although I felt okay after and my twitching was not as bad as time passed on I felt my head hurting more and more and my twitching got worse. I seen my surgeon and told him my head hurts and I feel like it has a brick in it and I have to hold it to get out of bed and the pressure is terrible. They couldn't really find anything then they he decided to go back in. So my surgery was set up for September of 2012. After my second surgery he told me that there was about 10 pounds of water and some damage to two of my other nerves. They put in a few more saline packs, I felt great although I still had some twitching I could function in the real world. I had to go back to Botox injections but the twitching is very little. About 6 months ago my head started hurting again the pressure is terrible, can hardly do my hair, can not sleep on that side, the bridge on my nose stings and has pressure, my head is sore to touch somedays worse then others. The twitching is manageable but only because of the Botox injections. I am once again going through al the tests to see what is happening . If I had to do it all again I would never of done the mvd surgery. That is my experience and opinion but I am sure other people have success stories. All the best !
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