Trying to decide in treatment of hemifacial spasm

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I have read so much here. Having to deal with my hemifacial spasm alone has been hard. At least now I know I’m not alone. I have questions though. It has been determined mine was not a tumor but trauma to the nerve. A year ago I was in a bad car accident. I have many herniated discs..,heD pain ..eye pain. Etc.  I have occipital neuralgia. Has anyone got a hemifacial because of accident?   Mine started as a small twitch in the eye. Now it’s constant twitching. Now in cheek and lip. I hear that twitching  sound in my ear. I don’t sleep..  I feel like I’m going insane. So, they are going to try the Botox. I worry about puttung that in my body, but it looks like there are people here who have done well. I just want this to be over for good.  Has anyone found Botox to stop it and no longer need Botox?  Any thoughts or advice is welcome. I have so much to deal with my neck and back..but this is very hard to live with. Thank you all for sharing. 

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  • Posted

    Hi dhp444,

    Your report of HFS after an accident (with many herniated discs) interests me, so I have some thoughts for you. I feel that when the spine is no longer straight due to sitting habits or injury of the spine at any level, HFS can develop.

    I've had HFS for 6-7 years now.

    Firstly, don't do botox. To cut things short, try to see a UK osteopath if you are in UK, and have your discs examined for alignment.

    Try a couple of adjustments, and feel out the muscles of the neck for sensitive and painful points. Some muscles are shortened and tight. Massage them with ointments or Chinese massage oils. Find out which head position stop the ear "wind" noises and you will be able to sleep.

    Wear dark glasses to hide the embarrasing eye closure, and accept that you cannot smile freely and will look stern, and angry to people.

    Avoid sitting too long, and mind your posture always. If your neck is too arched, keep the chin in - after osteo treatment.

    If your spasms diminish to the point your mouth is not pulled sideways too often, you will know things are improving. Massage your face, around the upper lip and cheek, and the ear. Hand finger pressure the sternomastoid muscle (near the skull occiput) and trapezius.

    Good luck, and join the club of HFS sufferers. Join the group in FB as well.

    There are many new sufferers - because many people never know that bad posture and spine config leads to this dreadful thing.


  • Posted

    Hi dhp444, so sorry to hear of your suffering with HFS and all of these other painful things.  I know that head trauma can be one of the causes of HFS but I am not sure where that leaves you in terms of a potentially successful surgery.  My best guess is that, if your neurosurgeon/neurologist can see a compression of the 7th cranial nerve by a vein or artery then there's every chance that you could be cured of the HFS by having surgery.  It is of course vital to find the right surgeon wherever you may be in the world.  I would suggest you join the Facebook Hemifacial Spasm International Support Group where you will definitely find others who suffer HFS because of head trauma - this group also has excellent information about surgeons in most parts of the world.  Your question about Botox is very valid but I'm sorry to say that it will never make the spasms go away completely.  Having said that, a lot of people have success with Botox on quite a long term basis - it is best administered with a very slow build up of dose - too much can have a freezing effect on one side of the face.  Many people report that having it around the eye can be very helpful but having it around the mouth and cheek may be less so and may result in the frozen face look.

    You are so right that this is hard to live with and it can be very isolating and emotionally blunting too.  Please know that you're not alone and there are many of us, either still suffering or cured (like me), who understand and 'get it' completely.  All best wishes.

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