Mom, Why does my face spasm when I try to smile?
It is our genuine hope that people who read this lens 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.
Definition of Hemifacial Spasm
Hemifacial spasm or HFS is a neurological disorder in which blood vessels constrict the seventh cranial nerve and cause varying degrees of facial spasming, typically originating around the eye of the afflicted side of the face. Because the nerve directs muscular activities in a particular region, interference will create involuntary contractions. Severe forms of HFS will contort an entire side of the face.
Here's my favorite link:
Kathy's Experience with Hemifacial Spasm
An introduction to HFS and treatments available.
Kathy was at Walt Disney World participating in the college program 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.
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.
Keep reading! Scroll on down for report on Kathy's MVD surgery! And thank you for your interest.
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Kathy - Before and After MVD
Dr. Jannetta's Story
Simply click on the link for more information about this book!
Working in a Very Small Place: The Making of a Neurosurgeon
Amazon Price: (as of 07/10/2009)
Obviously Dr. Jannetta is one of our favorite heroes! He was so very kind to all of us. We are so thankful that he was available for Kathy's Microvascular Decompression.
Working in A Very Small Place is Dr. Jannetta's story -- told by Mark Shelton. I am sure you will find this book as fascinating as we did.
Microvascular Decompression at Allegheny General Hospital
Kathy's MVD experience
The HFSA website describes Microvascular Decompression as "highly technical surgery 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.
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.
Kathy's entire story in her own words can be found at Kathy's story
(The support and information available at the HFSA website was a source of great comfort to us as we prepared for Kathy's surgery.)
Photo: Kathy and Dr. Jannetta 5 days after the surgery!
Blog Posts from Google About HFS
- Botox Through The Ages : CVN Health
- In December 1989, BTX-A (BOTOX) was approved by the US Food and Drug Administration (FDA) for the treatment of strabismus, blepharospasm, and hemifacial spasm in patients over 12 years old. The cosmetic effect of BTX-A was initially ...
- Neurosurgical treatment of primary hemifacial spasm with ...
- In nearly all cases, primary hemifacial spasm is related to arterial compression of the facial nerve in the root exit zone at the brainstem. The offending arterial loops originate from the posterior inferior cerebellar, ...
- FDA approves Dysport™ for therapeutic and aesthetic uses: • Ipsen ...
- ... for the treatment of movement disorders such as cervical dystonia (spasmodic torticollis), blepharospasm (involuntary eye closure), hemifacial spasm and various forms of muscle spasticity, including post-stroke arm spasticity, ...
Kathy's incision
more photos on HFSA website
I remember how concerned Kathy was about the incision, how it would look, how it would heal. I am attaching this photo so that you can see -- just in case you (or someone you love) is considering an MVD. Photo was six days after surgery. 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.)Visitors to this site are from all over the world!
The Official Patient's Sourcebook on Hemifacial Spasm: A Revised and Updated Directory for the Internet Age
Avg. Customer Rating: 
Amazon Price: $28.95 (as of 07/10/2009)
Hemifacial spasm: An entry from Thomson Gale's Gale Encyclopedia of Neurological Disorders
Avg. Customer Rating: 
Amazon Price: $1.45 (as of 07/10/2009)
A Hemifacial Spasm: A Multidisciplinary Approach
Avg. Customer Rating: 
Amazon Price: (as of 07/10/2009)
Sites to visit for more information about HFS
- Dr. Peter J. Jannetta -- WPAHS
- Resources at West Penn Allegheny Health System for diagnosis and treatment of face pain, trigeminal neuralgia, hemifacial spasm, hypertension, tintinitis, vertigo, Meniere's Disease and torticalis.
Facial tic or Hemifacial Spasm
on the web
- Squidoo Lens Reviews: Facial Tic Or Hemifacial Spasm?
- Lens Review by MiMi
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The Happy Couple!
Kathy and Adam on Smiles and Smileys Lens
Jaqueline Stone featured this picture of Kathy and Adam on her Smiles and Smileys lens and also told Kathy's story on her Get Happy! group. Thank you, Jaqueline, for helping us to spread this story!-
Smiles and Smileys! Spread the Joy!
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This is the happy place. Everything is about smiles and smiling. Look through all the happy faces and make yourself feel better. Share a smile and make someone else feel better. Go ahead, Smile. It's good for our health! :) And be sure to check out...
Thank you. We appreciate our visitors!
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CCGAL wrote...
Very touching story and informative lens. I didn't know anything about this before reading your narrative.
Posted June 27, 2009
Joan4 wrote...
in reply to Rita Limbaugh Rita, Kathy only made one trip to Pennsylvania and she stayed a week including the surgery date. The six month requirement was simply a matter of doctor's orders. Remember Kathy's surgery was in 2005. It is entirely possibly that the time limit has changed. The doctor will tell you though. Most of them are quite serious about that requirement.
Feel free to use the contact button at the top of the page - or on my profile - to contact me via e-mail.
Posted June 17, 2009
Rita Limbaugh wrote
I am not sure. I have e-mailed Dr. Jannetta but got no response yet. I am thinking I may just go there as he appears to be the guru for this surgery. If someone from his staff does nort contact me soon, I will call. I just though e-mailing was less intrusive but I really want to get the show on the road. How was 6 months determined as the amount of time need to get the Botox out of Kathy's syste? I had heard longer periods from some of Dr. Jannetta's patients. I would like to hear from Kathy when she returns. I agree that my face is not me but I would welcome something to "tide me over". But, if drugs worked, I probably would not be considering this surgery! How often did Kathy have to go to Pennsylvania including the surgery trip? I would love to be able to go, have whatever tests are required, and move right into the surgery. I really appreciate your communicating with me! I'll welcome any advice or comments you feel would be advantageous!
Posted June 17, 2009
Joan4 wrote...
in reply to Rita Limbaugh No, Rita, I am sorry to tell you,but the oral meds were not helpful for Kathy. The Botox was a constant nightmare and never did do right for her,so really during the 9 months, things were just as usual. We were thankful just to have the spasms and not the strange pulls brought on by the Botox. I know it sounds a bit trite, but Kathy really had a super attitude during the whole thing. She was just looking forward to having her face back. I think she clung to that thought. She is out of the country right now, but when she returns, I will have her respond to you on this site. Just remember, you are your heart, not your face. whew! and that's tough when you face is creating havoc. Do lots of things that make you happy during this period. Are you then going to Augusta for the surgery with Dr. Smith?
Posted June 15, 2009
Rita Limbaugh wrote
Joan, I am assuming that with the absence of botox for 6 months prior to surgery, Kathy's symptoms increased. Did the doctors have her on oral meds that were effective in reducing the symptoms during this period? This is one of the scariest thoughts for me. I can only imagine how awful my symptoms will be while I am off Botox. And my experience with oral meds like Tegretol was a nightmare too. I have been joking about wearing a ski mask between Botox and surgery. Do you have any encouragement from this period with Kathy ? Anything that helped? Rita
Posted June 15, 2009
Joan4 wrote...
in reply to Rita Limbaugh Rita, we loved the doctors in Augusta. Drs. Sethi and Smith were wonderful, and we planned for Dr. Smith to perform Kathy's surgery. That is exactly what we would have done, but Dr. Smith recommended we go on to Pittsburgh. Certainly you should check with them. They were both extremely kind and knowledgeable.
We got married in Scottsboro, Al in the 1960s - not far from Huntsville at all. In fact, my rehearsal dinner was in Huntsville! lol The folks at the HFSA site might know of doctors in that area who specialize in MVD. I really do not know a name at all. I am totally confident in recommending Drs. Smith and Sethi in Augusta, though. We will always be grateful for their help!
Posted June 08, 2009
Rita Limbaugh wrote
Thanks for your daughter's story. I have had HFS for 5-6 years. I have been on Botox injections (now every 10 weeks) for almost 5 years. So much of what I have read here and on the HFS Assoc. site sound just like my experience. I e-mailed Dr. Jannetta's site one week ago but have gotten no response. I am in Huntsville, Alabama so am hopeful there is someone closer who is qualified but will definitely go to Dr. Jannetta if I need to. Have you heard of qualified, experienced in the procedure, docs in Alabama or Nashville area? What can you say about the docs in Augusta? I'm looking for suggestions and guidance. Thank you for any help you can give!!
Posted June 08, 2009
Joan4 wrote...
in reply to lu-ann Of course there is always hope, Lu-Ann. I will be interested to hear what your doctor says. In my lay opinion, it is just taking a while for the nerve to settle down. 3 months is not long at all. It was my understanding after Kathy's surgery, that the spasms might come and go for a while. Please be sure you follow the link and join that super hemifacial spasm group. Someone there will possibly have had the same experience. Thank you for reading and for posting here. Please keep us updated.
Posted April 25, 2009
lu-ann wrote
thanks for your story. I had surgery in jan28,09,I was spasm free but now they are back only 3 months later exactly the way it was before surgery. I'm going back to the dr.do you think there is still any hope for me?
Posted April 25, 2009
lou16 wrote...
What a great lens, it's interesting that Kathy had no luck with Botox because my mum's doctor has told her that it would help her with her facial tics - I'm sending her this page to look at.
Posted March 03, 2009
boshemia wrote...
Wow, not only an impressive lens but look at all the people you have managed to reach through it. Amazing, if I could give you 10 *'s I would. Alas they only allow a mere 5.
Posted February 21, 2009
JulieR wrote
It's very easy to ignore ones facial flaw when you love them. I'm so glad Kathy's story ended the way it did but her MVD never bothered me. Like I said when you love someone and they are your friend, you look past everything else. Of course this is coming from someone who now has a 2 inch scar on her face. I hope others see this webpage so they can see positive results like Kathy's.
Posted January 25, 2009
Graceonline wrote...
Congratulations on a happy outcome. What a beautiful smile. May Kathy and Adam experience an excess of bliss and joy throughout their lives.
Posted January 23, 2009
jacquelinestone wrote...
Oh, Joan, I am so happy for you and Kathy! It would be an honor to have a photo of Kathy's beautiful smile on the Smiles and Smileys lens, with her permission, of course. I could then link it to this lens to show what a big deal a smile can be.
I'm smiling with you both!!!
Posted January 08, 2009
Joan4 wrote...
in reply to Jimmie Thank you, Jimmie and thank you for the angel blessing! Yes, sometimes the comments make me weep and I am astounded that so many have been helped by Kathy's story. The very best use of the internet - for sure - to provide information that makes a difference to someone - even if just one!
Posted December 28, 2008
Jimmie wrote...
Wow. Even more moving than this story is the comments above where people looking for help are finding this story and finding a solution to their problem. Wow.
Angel blessings on the way...
Oh -- ps. love the new year's hat!
Posted December 28, 2008
Vickie wrote
I cried while reading your story and seeing a picture of my distorted face on some one else. I was told botox was the only help I could get. I have been getting botox on the right side of my face for almost 5 years. They don't help as much as they did at first and the twitching in my face at night is terrible. They get worse when I lay on the left side of my head. A year ago I started getting headaches when lying on the left side of my head but now it is when I lay on any part of my head. So, now I get very little sleep. I did not want to get another opinion because the neurologist and my eye doctor said botox was my only hope. I will now pursue Kathy's surgery. THANK YOU! I have been praying a long time for healing of my facial spasms.
Posted November 23, 2008
John Sitton wrote
Joan,
What a double-edged, but inspirational experience you must be living to see Kathy's beautiful smile disappear... and then reappear! ... And now to see that publishing the story has given others with HFS a positive example and hope and support to hang on to... wow!... that is a wonderful way to make a difference!
Posted November 17, 2008
Winnie Chan wrote
Hi, I am a Chinese & living in Hong Kong. I got HFS for moe than 3 years and getting worse. I consulted three expert doctors in Hong Kong, they never told me about MVD. I hope that I can get more information about MVD in HK, anyone can help?
Posted November 16, 2008
Loann wrote
I am a sufferer and just about had it. am ready for the surgery.Thank you for the story.
Posted October 27, 2008
ElizabethJeanAllen wrote...
Welcome to the Totally Awesome Lenses Group.
Lizzy
Posted October 07, 2008
jennybeam wrote
Hi! Thanks for sharing this info. I think its quite strange that the eye doctor I went to only mentioned Botox as a treatment to hemifacial spasm, eventhough I asked him if there are other options. I will research and find out if microvascular decompression is being done here in my country (Philippines). But for now, I am hoping the medication I am taking will work...
Thanks again.
Posted October 05, 2008
Ener-G wrote...
Joan, Kathy looks so beautiful, with that great inner glow that speaks volumes. How wonderful, that you can share this story and help others. I wonder if Craniosacral Therapy (a noninvasive technique that releases restrictions throughout the head) has ever helped someone with this? The people who would probably know are at the Upledger Institute, if anyone was interested.
Posted October 05, 2008
Dolores Reyes wrote
MY story is very much like your, after my parents died in 2005 my spasms stared on my left side of my face and just kept getting worse as the months went bye, I went Peru and saw a specialist who recommended botox and medication, I wanted a second oppinion,so I went to mexico and I was told the same thing, I took blink test, and eco test to find out where the problem was coming from,I was told it was from the center of the brain and that medication would be the first step or 8 to 10 weeks, then if there was no improvement we would have to do the botox. I'm glad I read your story I feel like there is hope, and maybe someday I will be able to go out in public and eat in a resturant with out people looking at me like i'm a freak.
Posted September 25, 2008
Margo_Arrowsmith wrote...
Wow, my mom and brother have both had Bells Palsy, and while they sound similar, it seems this is different. Great and important information. 5*
Posted September 22, 2008
Shauna Xonway wrote
Interesting. My facial nerve is tied to by tounge berve (due to my brain tumor danabge. Still can't smaile 1005 BUT AM WORKING ON IT,sHAUNA cONWAT
Posted September 03, 2008
Vanesa wrote
Thanks a million to all the doctors...Kathy has the most beautiful smile in the world. I am so glad she was able to get that back.
Posted July 14, 2008
Jen wrote
Thank you for sharing your daughter's story, I was very touched by it.
I came across your page while researching facial spasms as I have been having a conntinuous one under my right eye that has not stopped in a month and has gotten worse in that it covers more area now.
I have been putting it off to stress as I have a child who has been through so much medically in his first 2 years but because it is on one side and has not gone away in a month I know think it is time to see my doctor. Your page has helped me see that.
Thanks so much!
Posted July 13, 2008
suzie wrote
Hi I have Hfs and have had it for 5 years had botox for 2and half years every three months tomorrow I go to see a surgeon and I want the operation as the spams are always there and at night it is like a drum in my ear I just wont help.onone understand I get (I can't see any thing)( don't worry about other people) (stop hiding away)
Posted July 09, 2008
mulberry wrote...
Wow, I'm so glad that it got resolved. This is fabulous information.
Posted July 07, 2008
chefkeem wrote...
I hope this lens becomes very popular so it might reach the folks who need this info. Great job. 5*s
Posted July 06, 2008
JohnNilsen1108 wrote...
Great little lense for newbies to model gave you 5 stars let me know what you think of my lense
http://www.squidoo.com/robinquiversweightlossdiet
Posted July 03, 2008
Golfmechanic wrote...
Hi Joan,
Your lenses are powerful and positve inspiration for all of us.
Geat story,
Les
Posted June 01, 2008
Joan4 wrote...
Oh, Shawnda, I do hope you will stay in touch with us and the wonderful folks at HFSA! Thank you for visiting and for commenting! Oh, we know how the "stress" stories go. It is discouraging. But..yes, now you are with people who understand. Please be sure we know the date of your appts and surgery with Dr. J -- he is wonderful!! You are in our prayers for a perfect surgery and successful outcome -- and spasm free!!!
Posted May 31, 2008
Shawnda wrote
Joan,
Kathy is a beautiful girl! It's very encouraging to read her story. I hopefully can get to Dr. Jannetta soon and have the same outcome! It's nice to finally find people who have the same problem, I always thought it was just stress, now with the websites you all have made helps get the word out and people like me are finding the help they need. You both are very inspiring people! Keep up the good work!
Shawnda
Posted May 31, 2008
mukunda22 wrote...
Hey Joan--All of your lenses are totally beautiful and good info, too!!
I will be checking back!!
Love,
Kate
Posted May 29, 2008
ScottE wrote...
Beautiful wedding picture and amazing story of strength and courage.
Posted May 18, 2008
Charlyjl wrote...
Joan, a wonderful story and so inspiring. Your daughter is beautiful and her smile divine.
Posted May 14, 2008
Lil Gibson wrote
An uplifting and inspirational story of a real life experience! Kathy's faith and the skills of her medical team truly moved mountains.. WOW!
Posted May 13, 2008
Heather Allen wrote
We are so thankful for the doctor's talents and knowledge that they were able to restore her quality of like and show her true happiness again!!
Posted May 13, 2008
Betty DeLorme wrote
Truly a beautiful story about a beautiful young lady!
Posted May 11, 2008
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Hemifacial spasm is often misdiagnosed and under-diagnosed. We hope you will help us spread the word.
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