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 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.
Please continue to scroll down for the rest of Kathy's story. Thank you for visiting and learning about hemifacial spasm.
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 11/28/2009)![]()
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.

Kathy and Dr J - 5 days post op
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
- Hemi facial spasm3 | Health Resources with a Focus on Tourette's
- Hemifacial spasm is a neuromuscular disorder characterized by frequent, involuntary muscle contractions (tics or spasms) in the face. It usually affects only.
- Blepharospasm: That Blinkety-Blink Movement Disorder
- Another condition that is similar in appearance hemifacial spasm, where there is excessive blinking of one eye, often accompanied by excessive twitching of the lower face on the same page. But hemifacial spasm is not a form of primary ...
- herbal treatment for hemifacial spasm
- hemifacial spasm is a neurological malfutioning and the muscles of one side of the face tend to contract. needless, to say the face gets contorted as an aftermath of this. this disease can affect both the genders without biasness; ...
Kathy's Microvascular Decompression 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!
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...
Video of Hemifacial Spasm before and after surgery
Thank you. We appreciate our visitors!
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Do feel free to leave a comment. You do not have to be a member of Squidoo to comment in this spot. Just scroll to the end of the comments! Thank you!
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- Chris Chris Nov 25, 2009 @ 1:49 pm
- I'm just recovering from a sucessful MVD (3 weeks post op now). Had it done my the legend that is Professor Coakham in the UK, (he knows Pete Janetta too!)Very slight spasm remaining every now and then and I've still got 100% hearing. I'd read all about Katy's story and many others. I consider myself cured and also consider Kathy's and my own story an inspiration for others who have this to go and get this done. Its great to have my life back! I know how you feel now! :-)
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- Joan4 Joan4 Nov 25, 2009 @ 2:13 pm
- Congratulations, Chris! We are celebrating with you!
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- LoKackl LoKackl Nov 24, 2009 @ 1:14 pm
- Joan, this site is so informative. I had never heard of this health problem. Thank you for doing this page - Beautifully done!
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- davidstillwagon davidstillwagon Nov 12, 2009 @ 3:34 pm
- Wonderful lens! 5*
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- Kate-Phizackerley Kate-Phizackerley Nov 5, 2009 @ 4:09 pm
- I think the comments for this lens demonstrate how good it is.
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- aj2008 aj2008 Nov 5, 2009 @ 6:31 am
- Joan, I cannot believe how I have not visited befire now. This is an inspiring story and I am so glad that there is such a happy outcome. SquidAngel Blessings for such a great lens.
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- Drenda Drenda Oct 21, 2009 @ 10:49 am
- This is a beautiful story about your daughter and I so thankful she is better. She is a beautiful girl with a beautiful smile.
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- HorseAndPony HorseAndPony Oct 20, 2009 @ 10:07 am
- What an amazing story. I am so happy for your entire family. I love these happy endings.
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- Jean Jean Oct 14, 2009 @ 2:45 pm
- I've had facial tremors on the left side of my face for almost seven years. Medications have not worked. The tremors are continuous and even while I sleep. I originally thought it was caused by stress after the death of my late husband, but I have since retired and am happily remarried...the tremors are getting worse though. I recently visited a neurologist and I'm waiting for an MRI. The doctor did mention a type of brain surgery but it concerned me. However, I am relieved to read that Kathy's surgery was so successful and if all else fails I will not hesitate to try the surgery as well. Thank you for posting the story.
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- GrowWear GrowWear Oct 7, 2009 @ 7:36 pm
- Have always wanted to bless this lens. Now blessed!
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- Spook Spook Sep 3, 2009 @ 2:49 am
- I have no idea how I missed this lens Joan. What a pleasure it was to read. Amongst many other things it just brings home how special you really are. All the best.
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- sandyspider sandyspider Aug 27, 2009 @ 3:07 pm
- Thanks for leading me here. I have had spasms around my eyes at times, but they do go away. I notice stress can bring them on. But I have never heard of anything quite like this. I'm glad the surgery went well. She is such a beautiful young lady. Very moving story.
I told my daughter about the Disney World College. She was excited and said that she could spare the time for that. :)
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- spirituality spirituality Aug 27, 2009 @ 12:29 pm
- Feeling a small spasm around my eyes this week. I sure hope it doesn't get as bad as this. Anyhow, great lens. blessed.
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- AdrienneJenkins AdrienneJenkins Aug 5, 2009 @ 11:37 pm
- Amazing personal story to tell. Beautiful daughter. Thanks for sharing.
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- JaguarJulie JaguarJulie Jul 28, 2009 @ 8:58 am
- You know Joan, I found that in my last job with that Fortune 500/100? company that I was getting lots of spasms around particularly my right eye. I am thinking it was attributed to all the stress I felt there. It is a good thing to be able to learn more about this through your thoughtful lens.
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- CCGAL CCGAL Jun 27, 2009 @ 5:27 pm
- Very touching story and informative lens. I didn't know anything about this before reading your narrative.
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- Joan4 Joan4 Jun 17, 2009 @ 7:19 pm | 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.
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- Rita Limbaugh Rita Limbaugh Jun 17, 2009 @ 5:32 pm
- 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!
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- Joan4 Joan4 Jun 15, 2009 @ 1:58 pm | 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?
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- Rita Limbaugh Rita Limbaugh Jun 15, 2009 @ 1:06 pm
- 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
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- Joan4 Joan4 Jun 8, 2009 @ 2:01 pm | 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!
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- Rita Limbaugh Rita Limbaugh Jun 8, 2009 @ 12:57 pm
- 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!!
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- Joan4 Joan4 Apr 25, 2009 @ 8:44 pm | 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.
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- lu-ann lu-ann Apr 25, 2009 @ 8:16 pm
- 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?
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- GrowWear GrowWear Mar 11, 2009 @ 11:34 pm
- Honored to welcome this lens to the Memoirs Group. :)
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- Wednesday Wednesday Mar 6, 2009 @ 8:33 am
- Great story! I am so glad this worked out so well.
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- lou16 lou16 Mar 3, 2009 @ 8:08 pm
- 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.
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- boshemia boshemia Feb 21, 2009 @ 1:50 pm
- 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.
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- JulieR JulieR Jan 25, 2009 @ 5:27 pm
- 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.
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- Graceonline Graceonline Jan 23, 2009 @ 11:59 pm
- Congratulations on a happy outcome. What a beautiful smile. May Kathy and Adam experience an excess of bliss and joy throughout their lives.
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- jacquelinestone jacquelinestone Jan 8, 2009 @ 8:29 pm
- 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!!!
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- Joan4 Joan4 Dec 28, 2008 @ 10:07 am | 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!
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- Jimmie Jimmie Dec 28, 2008 @ 9:58 am
- 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!
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- vbright105 vbright105 Dec 2, 2008 @ 7:19 pm
- Inspiring Story! Thanks for sharing it!
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- Vickie Vickie Nov 23, 2008 @ 2:49 pm
- 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.
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- John Sitton John Sitton Nov 17, 2008 @ 8:29 pm
- 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!
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- Winnie Chan Winnie Chan Nov 16, 2008 @ 8:48 am
- 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?
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- Loann Loann Oct 27, 2008 @ 12:51 pm
- I am a sufferer and just about had it. am ready for the surgery.Thank you for the story.
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- ElizabethJeanAllen ElizabethJeanAllen Oct 7, 2008 @ 7:24 pm
- Welcome to the Totally Awesome Lenses Group.
Lizzy
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- jennybeam jennybeam Oct 5, 2008 @ 10:46 pm
- 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.
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- Ener-G Ener-G Oct 5, 2008 @ 10:11 pm
- 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.
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- Dolores Reyes Dolores Reyes Sep 25, 2008 @ 12:07 am
- 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.
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- Margo_Arrowsmith Margo_Arrowsmith Sep 22, 2008 @ 7:03 am
- 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*
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- Shauna Xonway Shauna Xonway Sep 3, 2008 @ 7:44 am
- 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
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- The_Homeopath The_Homeopath Aug 11, 2008 @ 8:23 am
- Fascinating story, I'm glad it all came out so well!
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- OhMe OhMe Aug 3, 2008 @ 10:10 pm
- Great job telling this story. 5*
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- spirituality spirituality Jul 31, 2008 @ 6:41 am
- That's a great story - the wonders of modern medicine :)
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- Vanesa Vanesa Jul 14, 2008 @ 1:27 pm
- 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.
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- Jen Jen Jul 13, 2008 @ 10:09 pm
- 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!
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- suzie suzie Jul 9, 2008 @ 7:42 pm
- 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)
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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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