Personal HFS History - Steve Eiseler

My HFS journey started almost a year ago in the summer of 2007. My upper eyelid started twitching with a vengeance. I had experienced occasional twitching that lasted a day or so before, but this time a day turned to a week and then to a month. I didn’t give it a lot of thought although it was very annoying. I can’t give you a time line exactly but it was a few weeks into the upper eyelid twitching when the lower lid started doing its thing.

I decided to check in with my family doctor to see if I should be concerned. She suggested that I make an appointment with my eye doctor. At that appointment I was referred to my eye doctor’s colleague who was familiar with the "situation". After the initial exam I was told that IF the twitching was worse they could administer Botox. I couldn't imagine that the twitching could get much worse and was a little miffed at the attitude that if they couldn’t see the twitching, then it wasn’t happening (an attitude that I should have accepted then, because I have run into it several times on my HFS journey). After some pleading on my part, I received my first injections of Botox. Two shots, one in each lid. The twitching subsided somewhat but still had its bothersome moments as well as a feeling that my eyelids were no longer part of the eye area. They felt loose and floppy.

Within a month of the first Botox injections, I started to experience a "tugging" that seemed to be coming from beside my nose. That sensation was followed over the next few weeks by a slight "pull" at the corner of my mouth and those both progressed to a concert of movement that would start to close my eyelid. I decided to spend some time researching on the Internet. That was when I found the Hemifacial Spasm Association (HFSA) website. As soon as I saw pictures of people in full spasm, I knew that the tugging and pulling that I was experiencing was the same that was being displayed in visual form in front of me. I was a little panicked and made an appointment with my family doctor. At that appointment I told her that I had already self-diagnosed my condition and would like a referral to a neurologist for HFS. There was no argument or resistance, which panicked me even more. It was one time in my life when I didn’t want to be right!

At the neurologist appointment I was given a typical neurological exam and at the end of the appointment, my self-diagnosis was confirmed. I was scheduled for a MRI which supplemented the diagnosis. The neurologist said that in her opinion I was not a good candidate for surgery and that further Botox treatments were her recommendation for treating my HFS.

I had my third round of facial shots in March 2008 as part of my every three month routine. Each appointment has resulted in 15-25 shots with 35-53 units of Botox being administered (I am not sure the units word is accurate but it is what I recall the quantity being referred to as). Thus far each treatment has had different results. I am happy that the twitching around my eye subsides after treatment, but unhappy that I can’t close that eye by itself and with the occasional dryness. I am happy that the tugging and pulling is less, unhappy that it isn’t controlled completely. The thing that I am concerned with most is that the ‘relief’ only lasts a month or so and then all symptoms start again. Each time they seem worse than before. I have scheduled an appointment for a MVD Consultation with Dr. Kenneth Casey for May 9, 2008. My future journey will depend on his expert opinion of my specific situation.

Permission granted the HFSA to post Personal HFS History on website.
Steve Eiseler, April 08, 2008

 

Back to top

HFSA HOME

Home | Alternative Treatment Exp.| Ask The Docs | Bell's Palsy Exp. | Botox® Personal Exp. | Botox® Usage | Chat Room | Contact Us | Contribute | E-mail Archives | HFS Histories | Important Dates | Informational Pamphlet | Join Us | Links | Medical Advisory Board | Medical Terms | Members | Membership Summary | MVD Diaries | MVD Surgeries | Organizational Structure | Pictures | Site Map | Site Policy


Copyright © 2001, The Hemifacial Spasm Association (HFSA) Rev. 040901