Personal HFS History - Barb Bartz

There has never been a time in my life that I have not been aware of HFS. You see, my father developed the disease in his 20's, (around 1955) so I grew up seeing a twitching face. He was a schoolteacher in a small town and he handled the disease with grace. It never seemed to affect his lifestyle, and I never really noticed the twitches, I guess because he was my dad and I loved him the way he was. Little did I know that for more than 30 years, my dad visited various doctors and psychologists but no one could give him a diagnosis.

In 1987 while visiting my parents (I was married by this time), my mom and I were washing dishes and she looked at me with tears in her eyes and said, "Your eye is fluttering. They told us it was not hereditary." My right eye had indeed been fluttering off and on over the past month or so. I hadn't thought much about it, but mom insisted I see a Neurologist and get it checked out.

I saw a Neurologist a week later and had a MRI. He ruled out a brain tumor and MS. But as in the case of my father, he didn't know what I had. So I went home without a diagnosis and over the next couple of years the disease started to progress.

In 1989, I moved to the Philippines. When I returned to the USA in 1992, everyone could tell the difference. The spasms were now affecting not just my eye but also my face. But the exciting news was that my father finally had found a doctor to give him a diagnosis, HFS, and a treatment option, Botox®. I was also diagnosed with HFS and received my first Botox® injection in 1992. It was very effective, and I felt like it had given me my life back.

However a year later, as I made plans to return to the Philippines, I found out that Botox® was not licensed in the Philippines (that was back in 1993, it is now licensed). There was no way I could continue receiving the injections if I went back to Manila. My doctor suggested I contact Allergan (the company that markets Botox®) and explain my situation. A few days before I left for Manila, Allergan called and gave me the name of a doctor in Manila who had a special license to give Botox® shots.

So I returned to Manila and went in search of the doctor. All I had was his last name and the hospital where he practiced. I still remember walking into the hospital and finding four Dr. Navarro's listed on the wall directory. A couple of them were OB-GYN's and one was a pediatrician. But there he was, Dr. Jose Navarro, Neurologist! I was so excited to meet him and it turned out that he was in the process of lining up Botox® patients in order to give his first injections. He had a special license to bring Botox® into the country from Hong Kong and give the injections. He received his training at Mayo Clinic in Minnesota. Some may see this as mere coincidence, but I knew it was God showing me I could trust Him with every aspect of my life.

Over the next 10 years, I continued to receive Botox® injections every 3-4 months. When I was in the Philippines, I would receive them from Dr. Navarro. When I was in the USA, I would receive them from a doctor at the University of Minnesota. The results weren't perfect, especially as the spasms increased to include my forehead and neck. But it definitely helped decrease the severity of the spasms and no one told me about MVD surgery. The only one who had mentioned surgery at all was the doctor in Minnesota. Early on he said that surgery was an option, but that I would probably end up with a paralyzed face. Based on that inaccurate information, I really didn't want to pursue the surgery.

One of the problems of receiving the Botox® injections in the Philippines is that the doctor needed to line up several patients in order to use up the vial of Botox® in order to pay for the vial. Because most Filipinos do not have health insurance to cover Botox® injections, it became increasingly more difficult to find enough patients to share the vial. As a result, in 1998 and 1999 there were two occasions when I had to go 6 months between injections. My spasms would return within 3 months, so going for 6 months was starting to drive me crazy.

One evening, when I was feeling sorry for myself because of the spasms, I decided to do an internet search on Hemifacial Spasm. Well, the search led me to the Circle of Friends and HFSA groups. In reading through the websites, I could hardly believe what I was reading. There was actually an active support group out there that dealt with HFS, and there was an abundance of information about HFS and how to treat it. As I read, I started crying, knowing there were others out there who could identify with what I was going through.

The next several weeks were spent in front of my computer. I read through almost everything, taking notes on newly found information. And then I started reading about MVD. At first I thought, "Those people must be nuts! Having brain surgery for something like HFS." But as I continued to read and do further research, I came to realize that through most of the past 16 years, I had been hiding my true feelings about HFS. It had affected my personality (making me even more introverted than I already was) and I didn't like it. Knowing there was something I could do about it was wonderful. It took several months before I made the decision to have an MVD. But in my case, since the timing of the Botox® injections was unreliable and since the Botox® only worked well for me in the eye area, I felt MVD was the way to go.

As I write this (10/03), I have been off of Botox® for 6 months in preparation for MVD surgery in April 2004. The spasms are getting worse and it's hard to go out in public. As a white westerner living in the Philippines, being stared at is normal. As a white westerner with unpredictable facial spasms, being stared at is at times unbearable. Sunglasses help :-) But there is light at the end of the tunnel. In 5 months I hope to be spasm free.

I will be forever grateful to each one of you who have shared your own experiences with HFS. They have helped me in so many ways. And I will be forever grateful to God for leading me to this group.

Permission granted the HFSA to post Personal HFS History on website.
Barb Bartz, October 29, 2003

 

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