Botox concern

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I have been diagnosed with HFS 2 years ago.  I started Botox around that time with my eye doctor.  Botox helps, however, I wanted to see if other HFS patient's experiment what I do.  First - are you all getting it from eye doctors or other specialists?   Secondly - are you only getting shots on one side of your face?  They only do my left side and then my smile is crooked.  I try to outweigh the benefit of it but wanted to see if other people are doing anything different.  Thanks!

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    I had botox done by a neurologist. 45 min after the injections I had a full bundle branch block causing me to have a heart attack. Had a pacemaker by 8 am the next morning. Also I had to tape my eyelids shut to sleep at night. I would never recommend anyone get botox.
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    • Posted

      Hi Dave, sorry to intervene in this discussion with Angie.  I was shocked to read what happened to you and am very glad that you had the appropriate medical care to see you through.  Did you gain any insight into whether this is a known risk of Botox?  I do not remember being told of any risks other than potential bruising when I had my Botox treatments!
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    Hello, I've had HFS for 31/2 ish years, hard to pinpoint exact start, as I ignored it as stress for quite some time.  I was very thankful when they ruled out MS and tumors!  I'm feeling a lot like you Angie.  I have it on the right side of my face, it started as an eyelid twitch, then eyebrow, cheek, near mouth and even a little bit in the chin.  I waited until it was driving me crazy and started Botox.  I have done botox for about a year (with neurologist).  She puts some on the left side to even it out, but even then I still have asymmetry; my smile isn't my own anymore and that bothers me.  I also find for the first 2 or so weeks after an injection I am having issues with my vision in my right eye.  I've started using an oinment at night to help with dryness (GenTeal) and that helps a little with the vision problems.  I have found the search for alternative treatments to be a bit fruitless, but there is still a lot I haven't tried.  My neuro and then a neurosurgeon I visited, really put the pressure on for surgery, given that I'm only 35 and that's many many years of potential botox.  My mother is a doctor and works in neuroncology and pretty much said "avoid surgeries near the brain unless it is absolutely neccessary."  Her mentality is that often times, procedures meant to correct a problem can bring on new problems and sometimes the cure is worse than the problem.  That of course is gonna wildly vary from person-to-person and what kind of disease/problem is being treated.  So, as you may accertain, I have a lot of conflicting feelings!  I, too, am interested in what other people are doing and this is the first time I've found an active thread ( a lot seem to be from a year or more ago).  My neuro started using slightly less botox on my cheek and has placed it higher on my cheekbone, and that has helped make my smile less crooked.

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    • Posted

      Hi Amanda, apologies again for usurping your thread to Angie.  I am a 'surgery veteran', but procrastinated for 9 years before biting the surgical bullet.  If you do reach a stage when you consider surgery to be a real option then I would strongly advise you to look carefully for the very best in the land for this type of surgery.  It is of course a tricky surgery but in the best hands you have an 80-90% chance of cure - these are very good odds!  I have been around HFS forums (fora!) for several years and would say that, in the best hands, the risks are quite small.  You may wish to join the Facebook group (Hemifacial Spasm International Support Group) which has some great information and support - it has over one thousand members who mostly have this condition or have had it prior to surgery.  Please send me a private message if I can be of any help to you.  One last comment is that you are very lucky to be given a balance shot of Botox on the good side!

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