Personal HFS History - Alice Donohue

I noticed odd movements on the left side of my face in 1988. My physician at the time was a Rheumotologist who sent me to see a Neurologist, Dr. Kauffman at the MSU Clinic in East Lansing, MI. After a MRI or CAT scan (I knew nothing about either), Dr. Kauffman diagnosed "involuntary Hemifacial Spasm". I was advised my choices were to do nothing and hope it goes away, try medication, or have surgery. I chose to do nothing.

A good choice as it turned out! The spasms left in a few weeks/months (I don't remember), and I forgot completely about having them. I was 61 years old, involved in many activities and in good health. In the year 2000 a twitch in the left side of my face jogged my memory - the nuisance had returned. I spoke to my Internist and he said "it was just a tic, don't bother about them, they'll go away". I was eager to believe it. The flickers and flutters did not go away so I mentioned it to my Opthamologist who thought a Neurologist should see me. Remembering Dr. Kauffman, I was set up with an appointment.

I was seen by Dr. Eggenberger (an associate). I really like this man. He is compassionate, and very much aware of the disease. I guess they must have had my records, because I was not asked to have another MRI. He could see that I was a HFS patient, and we decided I should try Botox®, a serum that seemed to help many people with the problem. He studied my facial grimaces and photographed it to see where to do the injections.

I had my first Botox® shot 09/26/02. I was pleased for a while, but the twitches returned. On 12/13/02 I had a second shot. This time there was no relief, and I hated the Botox®. My eye would not completely close - I could not wink - the lower lid looked raw, and the area around the mouth did not look normal. It was a terrible time for me until around 01/06/03 when the spasms were more normal. Gradually through the month of January things got better, so much so that around 01/11/03 I noticed a wonderful relief and by 03/12/03 the spasms were gone! Was the Botox® working after all? Three months later, 06/30/03, they were back and have been a daily guest ever since. I may go a whole morning without any, but then it comes and goes for the rest of the day.

Not liking Botox® I asked my Doctor to give me medication and he prescribed Carbatrol (a pill). It reacted with another medication, and I had to go to the emergency room where they found my potassium/sodium count was dangerously low. For 2 1/2 days I had a potassium/sodium I.V. and all ended well. So back I went for one more Botox® shot, 08/25/03. I guess this is doing me some good because I am having bearable twitches and some ear rattling at the present time. Often I have complete relief for hours.

I have my next appointment with Dr. Eggenberger in late November 2003. I have kept him apprised of my situation and the newfound information of HFS on the Internet via e-mail. He knows that if I am considering a MVD and we should discontinue the Botox® to rid it from my system. I agree, and in this way will know if my spasms become worse or remain as tolerable as they are at the present time. The next 8 months will tell the tale.

Thanks to the lucky day, only several weeks ago, when I happened to type in Hemifacial Spasm on the Internet and up came the Circle of Friends Hemifacial Support Group site! After reading so much material I feel I have some power of my own to solve this mysterious demon! My sincere gratitude to all you helpful people. I send all of you a big hug and will continue my search to find a conclusion to my particular case.

Permission granted the HFSA to post Personal HFS History on website.
Alice Donohue, October 20, 2003

 

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