Hemifacial Spasm

[livingwith]

I am 26yrs old. The neurologist said I may have this disease called Hemi facial Spasm when he saw my condition. The situation is that the facial nerve may be pressing against the blood vessel. After that, I was told to go for a MRI scan. The results came out negative, the image did not manage to capture it. So right now, I’m living with it. As I’m afraid to go for the treatment options that he suggested… which is by surgery means and injecting BoTox…
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[Kerrhona]

Hi Jeslyn, My name is Rhona. I had surgery by Dr. Janetta in penn. in 1989. I was 23, iwas beaten by my boyfriend as a a teen. my surg was successful until now. I am 43 and spasms are back. Dr.s near me are idiots, this is the first i heard of botox, interesting. Did u ever have any head trauma? I'm in NY, would love to hear from u, i am new x this site, looks good. Good Luck and best wishes, Rhona

[comicaldream]

[quote="Kerrhona"]Hi Jeslyn, My name is Rhona. I had surgery by Dr. Janetta in penn. in 1989. I was 23, iwas beaten by my boyfriend as a a teen. my surg was successful until now. I am 43 and spasms are back. Dr.s near me are idiots, this is the first i heard of botox, interesting. Did u ever have any head trauma? I'm in NY, would love to hear from u, i am new x this site, looks good. Good Luck and best wishes, Rhona[/quote]

Hi Rhona,

Thanks for your comment. So there's still a risk of comeback even after surgery. For botox, there are side effects like drooping eyelids. Do u have any side effects after surgery? Cos my doc said after surgery, side effects like hard hearing & higher risk of stroke will incur.
No, I do not have any head trauma.
My mum suddenly went blind in her left eye beginning of this year. So I was thinking maybe cos I inherit my mum's genes? She did a MRI scan & discovered a lump inside the left side of her brain. I also did a MRI scan last year on advice from the doc but nothing was captured. Well, nice talking to you. Bes Regards, Jeslyn :)

[JenniH]

Hi, I was diagnosed with a left hemifacial spasm over 8 years ago. By a doctor in Houston Tx. I received, am supposed to receive, Botox injections for this. My case is pretty severe runs from my forehead to neck area. However as we all know botox is expensive as well as the professional fees that come along with injecting it. I love it, it helps to take it away for a little while, about 3-4 months. But then you've got to back. I wouldnt mind doing so, but like I said its very costly and ufortunately I cant afford to do so. I myself would reccommend trying it. The dr. dispenses small amounts as to prevent the droopyness, I've never experienced this. While its only a short fix, it makes me feel "normal" and allows me to do things with my children I cant sometimes to. Such as blowing kisses, or bubbles, or ballons. Or to even smile to take pictures with them, as this brings upon my twitching. Anyway, I suggest trying it if you've got the $. It simply feels like a little prick, but like I said in my opinion well worth it.

[NHPackerfan]

Wow, Rhona, spasm free for 20 years!!! At your age, I would definitely consider another MVD, you are so young.

I just had two MVDs -- one on each side, one last December, one in July.

Jennifer -- there is a risk of hearing loss during the surgery, ranging from mild to moderate to severe to a deaf ear. With an experienced surgeon, the rate is about 1%. There is no significant risk of stroke. The other risk factor for the MVD surgery is some permanent facial weakness after surgery, again about 1-2%. The main thing is to find a surgeon with experience and regular practice doing MVDs. Usually you have to go to a large teaching hospital or university medical center. I had mind at Mass General, affiliated with Harvard Med School.