Personal HFS History - Angie Hart (daughter of Oleta Jackson)

I’m not exactly sure of the year my cheek started twitching. Like many others I thought nothing of the twitch. I first saw a neurologist in 1993, as the cheek twitch had moved up to my right eye. I was diagnosed with Blepharospasm and given several different seizure medicines, which did nothing but make me fell like a zombie. I took different seizure medicines for about 1-½ years. I only have one eye and that eye has the HFS, I wear a false eye on my left.

Then came Botox® - the first 3 injections did wonders but when the spasms increased I received Botox® in more areas and that is when I got paralysis around the mouth. I didn’t know the difference and continued Botox® every 3 months until I finally stopped in 2002. Over the years the Botox® did help to keep my eye open so I could work/drive, but it began to lose affect.

I sent away to the Blepharospasm Foundation for a booklet and read up on Blepharospasm. I finally decided I did not have Blepharospasm.

I was eventually laid off my job of 24 years; had no insurance coverage; could not afford Botox®; my right eye was closed more often than it was open; I no longer went out of my house, except to go to the grocery store. When I could not get out of going out I hid from everyone as I hated looking like a freak. I hated my world and myself, why did I have to have this in my only good eye. I gave up but my Mom (Oleta Jackson) did not.

My Mom took over as my eyes and my voice. She found the HFSA and helped me through all the bad times as I could not work or drive.

In October 2002 my Mom took me to an Ophthalmologist who diagnosed me with Hemifacial Spasm.

In December 2003 I was approved for Medicaid. In February 2004 I found a new Neurologist who took Medicaid. I have also had a stroke sometime, who knows, the Scans and MRI’s MRA’s show it to be an old stroke. I have Atypical HFS as the spasms started in my cheek first.

On June 10, 2004 I ha MVD surgery with Dr. Robert Grossman at Methodist Hospital, Houston, TX (USA). I had a bulged artery looping over and underneath the 8th nerve and the artery had fused to my 7th nerve. My surgery was a long one, but I did very well. It took the doctor a long time to separate the artery. I was told Dr. Grossman saw no sagging blood vessels and the hearing monitor was telling the doctor to exit so he could only pad so much.

I woke up spasm free and remained so for two days, but then very weak spasms returned to my cheek. I can now smile and my eye is open. Although I’m not spasm free, I’ m glad I had the MVD. I will wait until the spasms get worse or hopefully they go completely away. I was willing to lose my hearing to get my eye back, and I did lose some hearing, but not very much. I feel very lucky to be where I am today! I did not lose any hearing until my 7th week post op, I experienced some very slight vertigo in my 6th week.

My opinion: No amount of medication will cure HFS, no Botox® will cure HFS, and the only chance of becoming spasm free is MVD surgery. I’d strongly suggest doing a lot of research - read everything about HFS, Botox®, MVD, etc. Once I met two others that had MVD surgery and I watched the tapes I knew MVD was my only hope. After watching the tapes and listening to Dr. Jannetta say some of you in this room will be spasm free, some of you won’t be, but you will be better, I chose the opportunity to make it better. My life has become normal again. I feel very blessed and I knew God was on my side before going into surgery. He was with me all the time, before my life changed with the demon.

Permission granted the HFSA to post Personal HFS History on website.
Angie Hart, January 03, 2005

 

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