Hemifacial Spasm

I don’t know if there is any correlation, but in the summer of 2003 I had several swelling occurrences on my upper left lip. At first the physicians thought it was food allergies, but now I am starting to speculate if the facial nerve was not starting to get irritated at that time.  Also, before the swelling incidents, numbness would periodically occur on my left cheek and tongue.

In August of 2005 my general practitioner referred me to a neurologist.  The neurologist scheduled me for an MRI.  His initial diagnosis was Hemifacial Spasm.  He told me that an artery was putting pressure on a facial nerve, but he didn’t know where.  He told me there were two options: botox or prescription drugs.  He cautioned me that the drugs could have side effects, so of course I elected to receive the botox treatments. The botox treatments did not help control the twitching/pain, so I discontinued the treatments.

Because I was not getting any answers from traditional medical and dental specialists, I began seeking consultation from alternative sources e.g. acupuncture, massage therapy and holistic dentists/doctors.  Although these treatments (acupuncture and massage therapy) did not cure my twitching/pain, they did provide relief.  In the March 7, 2011 issue of Time magazine they list alternative treatments for pain:

-       Massage

-       Yoga

-       Acupuncture

-       Herbal Supplements

-       Biofield Therapies

The only alternative treatment that I haven’t tried is yoga.

I had pretty much resigned myself to the fact that I was going to have to learn to cope with my facial twitch/pain for the rest of my life.  I had seen and read about an operation that helped relieve the pain of trigeminal neuralgia, but none of the Spokane neurologists mentioned the surgery, or what hospitals performed them.  A friend of mine saw a segment, on the Doctor’s, about an individual that had trigeminal neuralgia and the surgery that the individual received to relieve the pain.  She encouraged me to contact neurologists at the University of Washington (U of W).  Within twenty-four hours a surgeon from U of W contacted me and said that they would like to see me.  At a pre-op appointment the neurosurgeon said, “I can take care of the twitch, let’s just hope that the pain will eventually go away.”  On July 7, 2010 I underwent microvascular decompression surgery to stop the twitching.  The neurosurgeon told my wife that an artery had been putting pressure on cranial nerve seven, and that a mass had formed at that junction.  They inserted a Teflon “pillow” between the artery and nerve, to prevent them from making contact.  When I awoke the twitching had disappeared, but the pain still remains.   

I have dealt with severe facial twitching/ pain for seven plus years and I didn’t expect it to go away overnight. It is my opinion that the pain could have been avoided if the neurologists, that I conferred with for advice, would have been more aggressive in locating and correcting the cause of my condition, rather than giving me medication (trileptal, baclofen, etc.) to treat the symptoms.

Personally, and from my years of pain and experience, I recommend that individuals get microvascular surgery sooner than later.  The pain that I still have could have been avoided if I would have been directed to a neurologist that would have been more aggressive with finding a cure rather than treating me with "bandaid" treatments. 

I agree with you that the MVD surgery is the only answer for those suffering from HFS.  I tried Botox injections for 10 years.  I could not smile after my last Botox injection.  I live in Philadelphia, PA.  I found a neurosurgeon at Jefferson Hospital who sees patients with HFS.  I had the surgery 6 weeks ago and awoke spasm -free.  I feel like my life has been given back to me.  The surgeon I saw echoed your feeling that treatments other than MVD merely put a bandaid on the problem.  I was quite scared about having the surgery.  I live alone and it was difficult when I first came home.  I have wonderful friends who stayed with me and helped me recuperate.  I am saddened by your story and hope your pain diminishes in time.  Stay strong!  Wishing you the best, Sue

Good luck with your surgery.  My recuperation was rough but bearable.  I was very dizzy for a few weeks and did not drive for 10 weeks after surgery.  I was nauseous when I first came home from the hospital, but I did not have any pain or neck problems. I did have trouble sleeping.  I was so happy to finally be spasm-free that it all seemed worth the discomfort I was feeling. I was back to work in 3 months feeling great. Please let me know how your surgery goes.  I look forward to hearing from you and will keep you in my prayers.

Sue

Hope this helps.

Richard. 

First of all congratulations on your daughter's upcoming wedding.  When I finally found a surgeon that was well skilled in microvascular decompression surgery I looked forward to the surgery.  The surgery was not as painful as it looked in the photos that my wife took (of course I had some good pain meds).  Just remember not to rush yourself, take it easy ... you will know when to push yourself a little bit more each day.  I work on the computer quite a bit, so my neck near the shoulder blade gets painful.  There is still numbness where the incision was made.  Sometimes I have pain where they made the hole to get to where the nerve and vein were making contact.  My smile returned in about two months, if not sooner.  Good luck with your sugery ... you will not regret having it done.  I lived in hell for eight years.  My HFS involved my trigeminal nerve (suicide nerve), so whenever I twitched I had terrible pain.  I am still on pain medication, because of the damage that was caused over the years.