Personal HFS History - Judy Whitaker

I first noticed my eye twitching when I was packing to move as we had sold our house. I was freaking out because I didn't think I was going to get through before the moving trucks came; therefore, I thought the twitch was just from the enormous stress of packing. Well, I made it on time but the twitch stayed with me. At the time, I thought it was unbearable. Little did I know that it was only beginning.

After I had the twitch for a few weeks, I went on a trip with my Mom and Sister and it became a joke with us and we named me "old twitch eye". When I got back from this trip, I knew it was just not normal to have your eye do this for so long.

I started on my quest to find an answer. I went to my medical doctor (#1) and was told I just had a nervous tic and I needed to relax. Dr #2 - Nervous tic. Dr #3 - eye strain. On and on to one doctor after another with no one giving me any answers. I began to feel my face drawing in my cheek. Back to the doctors but it wouldn't always act up as much when I was in the Doctor’s office. It seemed to be a lot worse when I closed my eyes. None of the Doctors ever suggested that I go to a Neurologist- just try and relax and reduce the stress in my life. I think they thought I was crazy and I was feeling crazy.

. My Mom is 81 years old and she had an appointment with a Neurologist for some dizzy spells she was having and I took her to her appointment. I noticed the Dr. looking at me while he was examining my Mom. When he finished with her, he looked at me and said, "how long have you had the problem with your face?" I wanted to jump up and kiss him. Finally someone noticed I had a problem.

He immediately ordered a MRI because he thought I might have a tumor. I loved this Doctor, but he was only a couple of months away from retiring. He sent me to another Doctor for a second opinion to see if he agreed with his diagnosis of HFS. The Doctor he sent me to check my hearing and just looked at me, never touched me, and agreed with the diagnosis of HFS.

He said the surgery was too risky and made an appointment for me to have Botox® injections. I have been having Botox® for about a year and a half. At first the Botox® worked well, but the last time I had the injections (7/04) it did not stop the spasms but I looked like a freak because I could not move my mouth on the right side. My face and eye were still having the spasms. I called the Dr. and asked for a touch up and they said I could not get Botox® again for two months because the insurance would not pay. I thought this a little insensitive since they had been paid $1500.00 and missed the area this time. I was not in a financial position to pay $1500.00 out of my own pocket for another treatment so I was forced to wait two months.

My face has gotten worse. The pulling in my cheek is worse. The eye is twitching away while I am typing this and it is difficult for me to read. My mouth spasms almost constantly and I have to sleep on my right side to try and get it to stop so I can go to sleep. I have started having headaches and my ear feels stopped up all the time and has some pain. I don't know if anyone has any ear problems with this or not but I would love to know if you do. My ear problems started prior to the twitch. When I would go to the Doctor but they could not find anything wrong with my ear. I don't know if this was the beginning and the twitch came later or if it has nothing to do with it at all.

The spasms make me very nervous and I am very self-conscious. I am so self-conscious that I tell explain to people I have HFS while I am trying to listen or talk to them because I know it will start up and they will see it. I hold my hand over my face as much as possible and try not to smile because I am so crooked. I am really tired of winking at people that I don't even think are cute!

I am so stressed from this that I get sick at my stomach & just want it to stop.

Please let me hear from anyone that might have experienced any of these same things. I am trying to choose a Doctor and have been told by my insurance company that there will not be a problem. It turned out that not being able to pay $1500.00 to have that Botox® retouch was a blessing. I just found out from Dr. Jannetta that I have to wait 9 months from the last Botox® treatment before I can have surgery. I just wanted to cry because that means 7 more months of torture.

I am not having spasms in my neck or shoulder and am scared it is going to start. If anyone knows anything about Dr. Lanford in Nashville TN, please let me know. Also interested in how scary it is to have surgery away from home. When you get back home, what if you have complications and your Doctor. is so far away. My husband thinks we should just plan to stay there at least two weeks until we are confident everything is OK.

As of 02/18/05, I’m now 7 months Botox® free. The time has actually passed by faster than I thought it would. I am having more spasms and my face is drooping a lot more. My mouth has drooped considerably and my eye involuntarily shuts and I have to hold it open at times. I have a lot of trouble reading and watching TV. I hear noise in my left ear like rushing of air or fluttering or a whishing noise. I also hear my heart beating in my ear only on my HFS side. If anyone experiences this, I would love to hear from you. I am having a few headaches and neck pain and don’t know if this is associated with HFS or not.

I have started keeping a photo record of my face to see the changes from one month to the next. The changes are very apparent in pictures from a few years ago. I decided to try and see how rapidly it was progressing not just from the severity of the spasms, but also how it is affecting my looks. At my request, my husband has started making a photo of me each month. He says he can’t see much change and thinks I am beautiful and loves me the way I am. Of course, I tell him he is old and can’t see and that I need to see it for myself other than in the mirror. Pictures don’t lie. He doesn’t want to see it; therefore, I really don’t believe he does see it like I do. I look at myself in the mirror everyday and watch my face becoming more and more disfigured and it is very upsetting.

I had my hair cut by someone I had not seen in several years. She thought I had suffered a stroke. She didn’t say anything until I told her about my HFS when I started twitching and spasming while I was there. Even though my family keeps telling me I look fine and it’s not noticeable, I know it is and someone thinking I had a stroke just enforced what I see.

I do not like to have my photograph taken and hide when at all possible. I never noticed how many family functions we have and how many pictures everyone makes until this HFS. Digital cameras and camera phones have become my nightmare. They’re everywhere I go. My face is droopy and the eye on my left side is closed more than the right. My lips are drooped down on the left and when I try to smile, it is very noticeable. I have become more reclusive and do not want to meet new people and am self-conscious with people I haven’t seen in a while.

I have gained weight and am very nervous about the surgery and how my weight gain and my lack physical activity will play into my recovery. On 04/07/05 I’ll be off Botox for 9 months. I’d really like to have the surgery now but have this need to try and wait until the August meeting and meet all of the Surgeons and hopefully get myself in better physical condition. I want to exercise, lose weight and get fit but I just can’t seem to get the energy to do it but… there is always tomorrow.

My left eye has twitched a few times over the last few weeks and it has made me increasingly nervous that both sides might be involved.

I look forward to the emails I receive and really appreciate the support from the Association.

Permission granted the HFSA to post Personal HFS History on website.
Judy Whitaker, February, 19, 2005

 

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