Newly Diagnosed HFS

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Hello. I am trying to find some reassurance. My partner who is 33 has recently been diagnosed with HFS. This affects the whole of the left hand side of his face. He is becoming increasingly anxious which I believe to be making the condition worse. Can anyone advise of anything they have done which may help the anxiety? Thank you in advance

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  • Posted

    Hi Ben, so sorry to hear of your partner's diagnosis.  I think the anxiety has to be treated as a separate issue to the HFS and it's possible the doctor may be able to prescribe something to help.  Stress is something which exacerbates HFS (but does not cause it), so your partner needs to limit stress in so far as possible.  It's really important to have an MRI scan just to exclude other possible conditions and so I hope this has happened or is in progress.  HFS is unfortunately a progressive condition but it is not life threatening in any way.  But, it does take a big toll on a person's confidence and emotions and more so when so young of course.  In the UK, people with HFS are encouraged to try Botox (not particularly painful and can be really helpful if administered in gently built up doses) and so this is worth a go.  The only cure for HFS is surgery which, from personal experience, I know can be very scary.  It's way too early for your partner to be considering this, but it's worth hanging on to the fact that there is a cure.  I had surgery in 2013 in Bristol with Nik Patel and was thankfully completely cured without any complications.  If surgery does ever become a preferred option then it's massively important to choose your surgeon well and to get someone who has vast experience of this type of surgery on a regular basis.  Anyway, I am rambling on now so will leave it there, other than to say it can be helpful to also join the Facebook Hemifacial Spasm International Support Group where there is loads of information and support from fellow sufferers.  But, these groups do tend to be a big pro-surgery and this can be too much too soon when someone is first diagnosed.  Hope this is helpful.  All best to you both.
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  • Posted

    Hi Ben,

    I was diagnosed with HFS 20 years ago.  I live in the USA.  I tried Botox treatments and regret that I ever took that route.  I had HFS on the left side of my face.  Gradually, after many Botox injections, the left side of my mouth began to droop and I could no longer smile.  My left eye twitched and closed every time I spoke, chewed, or drank anything.  I finally made the decision to have surgery.  I am 63 years old.  I had MVD surgery three months ago.  I awoke from surgery spasm-free.  I am doing well and just returned to work yesterday.  I cannot tell you how happy I am that I had surgery!  I wish I had done it 20 years ago.

    My point is that if your partner has been diagnosed with HFS, the only cure is surgery.  Botox is not the solution, and over the years, makes the condition worse.  The surgery is quite scary and I was petrified, especially at my age.  But I am so glad I had MVD, microvascular decompression.  I assume that your partner had an MRI.  Most likely it showed that an artery in the brain is pressing on the facial nerve, thus causing the hemi-facial spasm.  MVD surgery will fix that.  You and your partner  need to find an excellent neurosurgeon who specializes in HFS and is familiar with MVD surgery.  Do not waste time with Botox.  See a neurosurgeon and get the problem fixed!  I feel so much better about myself now that I am spasm-free.  HFS takes its toll on a person's self-esteem.  I wish you and your partner the best.

    Sue

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  • Posted

    Hi Ben,

    Not much to add to the information which has been so cogently provided by Sue and Roseanne, but from my perspective as an erstwhile HFS sufferer, the shame, embarassment and loneliness were as bad as the actual physical problem. I foolishly let years go by not letting my partner know just how low this problem was making me feel. ( though it must have been pretty obvious) This condition does affect personality in a major way. It was only when I wrote it all down in a letter that my partner began to really understand what I was thinking. Me ducking out of yet another social event was then seen not as rudeness or laziness, but an understandable response. Not long after this, we (!) decided ( together!) that surgery was worth a shot  The partners of those affected by HFS can be such a source of support and common sense advice to those whose thinking has been a little distorted by the strain and stress of coping with this debilitating condition- understanding the ways in which it impacts and working together can do much to lessen anxiety for sufferers. As Roseanne implies, the decision to have surgery is something each individual must consider for themselves ( with the help of wise counsel from those close to them). As Sue says if and when they do, it can be life changing. I like finding new things to get anxious about now my spasms gone. smile

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    • Posted

      Hi Ed,

      You said it all!  I do not think people understand how devastating HFS can be to one's self-esteem.  I found myself becoming a recluse, shying away from friends and social outings, and living in dreaded fear of having my picture taken.  My mouth drooped on the left side so pictures were enough to reduce me to tears.  I'm glad to hear you opted for surgery.  It's a difficult decision, and a brave one at that.  Cheers to you!  Wishing you all the best!

      Sue

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  • Posted

    Not sure what to recommend, I just told my doctor I wanted the surgery once they did the MRI. You could have your partner get the botox to relieve him of the symptoms. Before I had the surgery I would take time to myself and take several deep breaths through my nose and relax which helped. Stress seemed to make it worse which caused more stress... Sorry if I am no help, wish you luck

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  • Posted

    Whatever you do, avoid Botox. The muscle of the face diminish in size and the face gets a palsied appearance.

    I had 4-monthly botox for anumber of years starting Oct.2010. Not only was Botox quite ineffective, your smile will become lopsided later.

    Massages help quite a bit.

    ...............

     

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    • Posted

      Hi Windhurt

      Sorry to hear that you had such a negative experience with Botox.  Just to keep the message balanced, I would say that I've heard of many people who have a long and successful history with Botox; some even having it for 15 years before having surgery.  I found that it was helpeful for the eye twitches but less so when the mouth began to join the party.  I guess everyone has to take a view on this and possibly try it a few times in slowly built up doses.

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    • Posted

      Windhurt,

      We are finally in agreement!  Botox is not the answer for HFS.  I received Botox injections for almost 10 years.  The left side of my face took on a palsied appearance and my mouth drooped.  I could no longer smile and could not move the left side of my lips.  It was devastating.  I believe that the Botox injections were a waste of time.  I had MVD surgery 3 months ago and wish I had done that 10 years ago.  It is the only answer as far as I am concerned.

      Sue

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    • Posted

      I am happy for you, I have only a few twitches when I get stressed otherwise it has made my life normal.
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    • Posted

      Sue, glad you are happy with the MVD surgery. Do spare a thought for those failed ones or the ones that never get to write or talk again , if you know what I mean.

      People generally don't care if our face twitch. It's us who feels embarrassed and apologetic, but deep down it is the inferiority complex that develops front the inability to hold needed eye contact.

      The need for MVD is different for individuals.

      I'd say it will be devastating for people doing front-line jobs .

      But ultimately its the psyche that needs a self-lift more than a risky op. At 65 I prefer to work on the cause rather than the symptoms which medicine widely use.

      And who knows, one day when the real cause is known, the treatment may be very different from the current route.

      Good Day.

      I do apologise for anything that may have not been well written. Thank you.

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    • Posted

      Where do you massage? I haven't found the spot that stops the spasms. I can usually get them to stop if I tilt my head back way back but that's not a great option when I'm driving.
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