Hemifacial Spasm

[livingwith]

I have had a right side hemifacial spasm for nearly 4 years and it is starting to get me down. I have had regular botox injections for the last 18 months 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 ...Read the full article

[candd]

I can relate to you. I started having a twitch at the left corner of my mouth 3 years ago, which spread to involve the entire left side of my face. I had botox injections 3 times which COMPLETLY paralyzed my left side, and it was determined that I was allergic to the botox. I had MVD surgury in Sept. 08 by a Dr. at Vanderbilt University who studied under Dr. Janetta. My spasms did not go away and now, 6 months later, are worse than before. It is now interfering with my job, because I am embarrassed and dont want to look people in the face. I will probally return to the Dr. this year to see about a 2nd surgury. I have about reached my breaking point.......

[martinyves]

I'm writing this from my hospital bed having had mvd surgery on the 13/03/09. Right now my eye is twitching more than it ever used to. I also have partial hearing loss in my left ear. The surgeon hopes that things will settle down. I have been living with HFS for about ten years now. I'll update in a few days.

[NHPackerfan]

I am on a larger online list for HFS, I have participated in it for almost 2 years now. I can remember only about 2 people w/ anything like a remission, and for one person it was only for a matter of weeks.

When I was first diagnosed, I remember reading "permanent and progressive" (alas, I cannot find the article or website now). Those words haunted me for months. This was my first experience of a significant medical condition that wasn't an infection or an injury.

So, no, the spasms do not get better over time; if anything, they get worse. Plus, you end up w/ muscles weakness in the longterm.

As non-life threatening conditions go, this one is tough, because treatment options are pretty limited.

I ended up w/ very rapidly progressing bilateral HFS and have had two successful MVDs. My face isn't quite normal -- I do have some tingling and tightness regularly, and some funny twinges occasionally -- but I am spasm-free. (Most of the symptoms I have are related to the delayed postop facial palsy I had on the left.)

I am very happy w/ my face and the results of my surgeries. Many neurologists don't discuss the surgical option, it seems, you have to advocate for yourself, if you want the hope of the spasms being gone permanently.