Newly Diagnosed HFS
Posted , 10 users are following.
Hello. I am trying to find some reassurance. My partner who is 33 has recently been diagnosed with HFS. This affects the whole of the left hand side of his face. He is becoming increasingly anxious which I believe to be making the condition worse. Can anyone advise of anything they have done which may help the anxiety? Thank you in advance
1 like, 11 replies
Roseann ben1985
Posted
sue15958 ben1985
Posted
I was diagnosed with HFS 20 years ago. I live in the USA. I tried Botox treatments and regret that I ever took that route. I had HFS on the left side of my face. Gradually, after many Botox injections, the left side of my mouth began to droop and I could no longer smile. My left eye twitched and closed every time I spoke, chewed, or drank anything. I finally made the decision to have surgery. I am 63 years old. I had MVD surgery three months ago. I awoke from surgery spasm-free. I am doing well and just returned to work yesterday. I cannot tell you how happy I am that I had surgery! I wish I had done it 20 years ago.
My point is that if your partner has been diagnosed with HFS, the only cure is surgery. Botox is not the solution, and over the years, makes the condition worse. The surgery is quite scary and I was petrified, especially at my age. But I am so glad I had MVD, microvascular decompression. I assume that your partner had an MRI. Most likely it showed that an artery in the brain is pressing on the facial nerve, thus causing the hemi-facial spasm. MVD surgery will fix that. You and your partner need to find an excellent neurosurgeon who specializes in HFS and is familiar with MVD surgery. Do not waste time with Botox. See a neurosurgeon and get the problem fixed! I feel so much better about myself now that I am spasm-free. HFS takes its toll on a person's self-esteem. I wish you and your partner the best.
Sue
ed_92085 ben1985
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sue15958 ed_92085
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You said it all! I do not think people understand how devastating HFS can be to one's self-esteem. I found myself becoming a recluse, shying away from friends and social outings, and living in dreaded fear of having my picture taken. My mouth drooped on the left side so pictures were enough to reduce me to tears. I'm glad to hear you opted for surgery. It's a difficult decision, and a brave one at that. Cheers to you! Wishing you all the best!
Sue
dirck38123 ben1985
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WindHurt ben1985
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I had 4-monthly botox for anumber of years starting Oct.2010. Not only was Botox quite ineffective, your smile will become lopsided later.
Massages help quite a bit.
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Roseann WindHurt
Posted
Sorry to hear that you had such a negative experience with Botox. Just to keep the message balanced, I would say that I've heard of many people who have a long and successful history with Botox; some even having it for 15 years before having surgery. I found that it was helpeful for the eye twitches but less so when the mouth began to join the party. I guess everyone has to take a view on this and possibly try it a few times in slowly built up doses.
sue15958 WindHurt
Posted
We are finally in agreement! Botox is not the answer for HFS. I received Botox injections for almost 10 years. The left side of my face took on a palsied appearance and my mouth drooped. I could no longer smile and could not move the left side of my lips. It was devastating. I believe that the Botox injections were a waste of time. I had MVD surgery 3 months ago and wish I had done that 10 years ago. It is the only answer as far as I am concerned.
Sue
dirck38123 sue15958
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WindHurt sue15958
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People generally don't care if our face twitch. It's us who feels embarrassed and apologetic, but deep down it is the inferiority complex that develops front the inability to hold needed eye contact.
The need for MVD is different for individuals.
I'd say it will be devastating for people doing front-line jobs .
But ultimately its the psyche that needs a self-lift more than a risky op. At 65 I prefer to work on the cause rather than the symptoms which medicine widely use.
And who knows, one day when the real cause is known, the treatment may be very different from the current route.
Good Day.
I do apologise for anything that may have not been well written. Thank you.
danetrainer WindHurt
Posted