Hemifacial Spasm – Our Daughter’s Experience

Facial Tic or Hemifacial Spasm

Mom, Why does my face spasm when I try to smile?

Our daughter struggled with hemifacial spasm for almost ten years. She eventually underwent a successful microvascular decompression at Allegheny General Hospital in Pittsburgh, PA. Kathy is now spasm-free! Hooray! What joy to see that beautiful smile again!

It is our genuine hope that people who read this page will be educated about hemifacial spasm and help us spread the word. If you have a friend or relative who might be suffering from hemifacial spasm, please send them this link and help us help them. Thank you.

Please continue to scroll down for the rest of Kathy’s story. Thank you for visiting and learning about hemifacial spasm.

Update: March 2011 – Today we celebrate 6 years since Kathy’s successful surgery. 6 years and still spasm free! What a wonderful reason to celebrate! We are indeed very thankful!
Photo Credit: Personal Collection

Update February 2013 – Celebrating 8 years since Kathy’s surgery – and yes, she is spasm free and her smile lights up the room! We are daily thankful!

Update March 5, 2014 – 9 years spasm free!! Thank you to Dr. Houck for getting us on the right track, Drs. Sethi and Smith for their help in Augusta GA and of course, to Dr. Janetta’s team at Allegheny!

Update 2016 – 10 years spasm free! What a blessing! we are indeed thankful.

Kathy was participating in the college program at Walt Disney World when she first called me about this little “tic” near her eye. I assured her that it was probably due to stress and would go away by itself. It did not. The small tic became progressively worse over the next ten years. Various physicians blamed stress. Finally, someone diagnosed “hemifacial spasm”.

We also learned that HFS is caused by a blood vessel pressing on the facial nerve.
Treatment options seem to be limited to Botox treatments or surgery. Sometimes medications would be prescribed to quiet the spasms, but with poor results. Botox treatments, expensive and painful, also provided poor results. Kathy’s face would either freeze in one position or the spasms would continue. (Note — patients often have good results with Botox treatments — for Kathy, it was not a good option.)

We did not hear about microvascular decompression in those days. We were only told that brain surgery was an option, but too risky.

Thank you, Dr. Houck

Years continued to go by. Kathy graduated from college and was working in a local dentists’ office. Her spasms were almost continuous and during the spasms her eye would almost completely close. She would tell me that she could feel her face spasming during the night. The dentists in her office noticed that the situation was worsening and did some research for her.

Soon we had an appointment in Augusta, GA at the Medical University. Drs. Sethi and Smith agreed that an MVD would be helpful, but when Dr. Smith, the neurosurgeon, studied the MRI results, he recommended that we go to Pittsburgh’s Allegheny General Hospital to see Dr. Peter Jannetta — stating that Kathy’s situation was “complicated”.
Dr. Sethi also told us about the HFSA website, which was a Godsend. We began to communicate with the wonderful folks there, and learned so much about HFS and MVD.

It’s Really Cold In Pittsburg In Winter

Of course, we had to have a picnic in the snow — or we pretended to anyway. It was so cold, but this was our welcome to Pittsburgh.

What is Hemifacial Spasm?

We Arrive in Pittsburgh

The HFSA website describes Microvascular Decompression as a “highly technical surgery which involves a neurosurgeon surgically separating one or more blood vessels/arteries that are impinging upon the seventh (facial) cranial nerve. Small implants made of shredded Teflon felt (which looks like wisps of absorbent cotton) are used to maintain the separation of the offending blood vessel/artery on the nerve. The offending blood vessel/artery rests on the felt instead of the nerve. (The felt is held in place by the pressure exerted by the artery/vein on the nerve.)”

We arrived in Pittsburgh in March of 2005– about six months after our visit with Dr. Smith. Kathy had to wait the six months for the Botox to wear off. In Pittsburgh, we were greeted warmly and immediately had total confidence in Drs. Jannetta and Casey and their staff. We were all so very impressed with the friendliness of the entire hospital staff at Allegheny. Of course, we all were so thankful for her to be in the extremely competent hands of Dr. Jannetta and Dr. Casey.

We Are In the Right Place Finally!

Kathy’s surgery was successful and although she was still having spasms immediately after surgery, within a few days they began to diminish. About six weeks after the surgery, Kathy was totally spasm free and has remained spasm free since that time.

Kathy does have some hearing loss on the HFS side, but says she would have the surgery again if she needed it.

I remember how concerned Kathy was about the incision, how it would look, how it would heal. I am attachinga few photos. One of those is a closeup so that you can see — just in case you (or someone you love) is considering an MVD. Photo was six days after surgery.

Working in a Very Small Place: The Making of a Neurosurgeon
is Dr. Jannetta’s story — told by Mark Shelton. I am sure you will find this book as fascinating as we did.

The Rest of the Story

Kathy and Adam were married in August 2007. She wore her hair piled up on top of her head for her wedding day — not bad for a gal who had undergone brain surgery just 3 short years ago!!! (More photos of Kathy’s incision are also available on the HFSA website.)


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1 Comment

  1. Gypzeerose

    I appreciate how you shared the terrible challenges your beautiful daughter faced and how she overcame them. I am sure you helped a lot of people Joan.

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Meet The Author

Joan Adams

South Carolinian writing for families online at Webnuggetz and personal blogs.

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