Hemifacial Spasm

A facial twitch or facial tic is not normally a cause for alarm. Most facial tics are caused by stress, and last only a short time. However, if the facial twitch continues for months and years, and gets progressively worse, it could be a condition called Hemifacial Spasm.

Our daughter struggled with this condition for almost ten years before we found a proper diagnosis and treatment. This article is written in the hope that a reader will recognize their own symptoms and find appropriate care.

Kathy underwent a Microvascular Decompression at Allegheny General Hospital in Pittsburgh, Pennsylvania in 2005 and is still spasm free. We are most thankful.

Kathy first called me about this little "tic" near her eye when she was at Walt Disney World participating in the college program. I thought it was likely due to stress and would go away by itself.

I was wrong. The tic did not disappear. The small tic became progressively worse over the next ten years. Various physicians blamed stress. Often Kathy's eye would close completely. She had difficulty reading for long periods of time, and while the spasms were not painful, they were uncomfortable, continuous, and often disturbed her sleep.

She was treated during that time with Botox injections -- which were painful and expensive. Often the injections would cause her face to "freeze" in one position for weeks. (Botox can be helpful to such patients - for Kathy, however, Botox was not a good option.) She also was tried on prescription medications, which were not effective in reducing the spasms.

The years passed by quickly.  Kathy graduated from college and went to work in a dental office. The dentists noticed that the situation with her eye was getting progressively worse. One of the dentists researched the condition and made arrangements for her to be seen by a neurologist at the Medical University of Georgia.

We were delighted and encouraged by our visit to the doctors in Georgia. Dr. Sethi told us about the Hemifacial Spasm Association on line, and gave us the proper diagnosis.

We learned that Hemifacial Spasm is caused by a blood vessel pressing on the facial nerve. A Microvascular Decompression is brain surgery that involves putting a little pad between the blood vessel and the nerve. While not always successful, and with some risks, Kathy opted for the surgery. The doctors in Georgia recommended we take her to Dr. Janetta in Pittsburgh because her situation was "complicated".

When we arrived in Pittsburgh, we met with Drs. Casey and Janetta.  They were both very encouraging, informative, and personable.  We all felt better immediately!

Although Kathy had spams after surgery, in a few weeks, she was completely spasm free and has not had a hemifacial spasm since her surgery.

Kathy's complete story -- and the stories of many others -- can be found on the Hemifacial Spasm Association website.  We were completely supported by this wonderful group of people and we encourage you to join the HFSA if you are suffering with this condition.  The HFSA does not recommend any treatment, but educates about all of the options.  We found it helpful just to talk to people who were dealing with the condition.  In fact, to this day, Kathy receives 2 or 3 emails every week from people with HFS who want to ask her questions.  We are happy to answer those questions and will forever be thankful to the HFSA community for their support and encouragement.

Photos of Kathy's incision are available on the HFSA website.  For this article, however, I just want you to see her beautiful spasm-free smile.

Thank you for reading this.  Please encourage anyone you know who is struggling with facial tics to join the HFSA on line.