My hemifacial spams are gone without surgery!

Hi Kathy,

I've had this condition since 9 years and im still only 33. Been taking botox since last years 2 years and it helps a lot. I have also tried vimpat and it works too, but it makes me sleepy while im at work. When it comes to natural remedies, long sleeping hours is the only thing that worked for me. Whenever I have a good 8+ hours of sleep, i always felt better in the morning and through out the day. Spams do happen, but not to a point where I care.

Hi Kathy my doctor have me on Botox injections every 3 to 4 month.

I am considering Botox injections. I have had hfs for over 10 years.  I do not feel I want to go through  surgery .  Just not desperate enough.  I do not think RX will do much then dull me out and my neurosurgeon agrees.  So maybe it is time to try the Botox treatment. Still hesitant though. Afraid it will change my appearance too much.  Also the risks of dropping eye. 

Are you pleased with your results after starting Botox?

Thank you 

Hi John, sorry you've had this for so long - you've done well in avoiding treatment thus far.  I was pleased with Botox around my eye area - it possibly made one eye look slightly larger than the other but no other bad effects.  The secret seems to be to build the dose very gradually rather than going for a heavy dose first time around.  I didn't like Botox when it was injected into my cheek and around my mouth - one half of my face appeared completely frozen and I could no longer smile - this was horrible and I never repeated the process.  Good luck and hope it goes well for you.

The samw way I started and botox injections was my first treatment but only last 3 to 4 months and I have been on botix injections since them 5 years ago. And now my smile is not even and I still have the problem around my eye and my chick.

Hello Dan,  I am a first time participant in a forum.  I was  diagnosed with hfs  about 8 years ago.  I will not use Botox.  I have learned to live with this ailment but I find the symptoms increase as the years pass.   I assume that you are still taking a nitric oxide supplement?   I have done some casual reading on the benefits of NO and I conclude that these benefits could reasonably extend to hfs.   That said, I wonder why more anecdotal evidence of these benefits has not surfaced in these forums?  What was it that pointed you in that direction?  (I realize that there were other things that also may have helped ). 

I have found the symptoms of this ailment to be so erratic. They come and go with growing frequency.  This is an under studied ailment.  Remedies are so anecdotal.  What seems to work one day is not helpful the next!   The fact that one needs to search and travel far to find the handful of medical practitioners who have the necessary expertise to correct this ailment is astounding in this day and age!  I keep hoping for a small breakthrough for this “benign” ailment.

Glad to hear that your spasms have not returned.  

John

Apologies for butting into your conversation John.  Just to say........   There is actually a lot of research on the subject of HFS and there are a lot of surgeons (in certain countries - mainly US, Korea, China, UK, Vietnam) who have a good record in curing this condition.  There does not seem to be any foolproof therapy other than perhaps Botox (which can still be hit and miss in its efficacy).  I would strongly recommend you to join the Facebook Hemifacial Spasm International Support Group where the information is up to date and probably as good as you are going to find anywhere.  I endured HFS for 9 years before eventually finding the desperation and courage to have successful surgery here in the UK.  Wishing you luck in your quest for help with this disempowering condition.

Hello Roseann,  Thank you for providing insight.  It is nice to hear that your decision to seek a surgical solution proved beneficial.

Yes, I will join the Facebook Support Group.  I have found some support here on this site also.

May I ask How long did it take you to recover fully from your surgery?  

John

 

Hi John, I just wrote you a long message but it disappeared!  Rather than repeat it I will just paste a piece I wrote about surgery which I hope you find interesting.  My recovery took 3 weeks to feel quite well, 6 weeks to be happy to drive and work again and 3 months to recover full energy levels, but, we are all different!  

Surgery – decisions, risks and recovery – a simple explanation based on the experience of group members (who are not medics)

HFS is a debilitating and disempowering condition.  It can sap confidence and make even the most outgoing person become withdrawn.  It punches well above its physical weight and most of us have been desperate for a cure at some time in our HFS journey.  There is only one potential cure for HFS and unfortunately this is surgery.  Yes, which one of us ever thought that we might willingly have our skull opened up?  Certainly not me!  If you don’t feel frightened at the prospect then you are in a minority.

Members of this group appreciate how frightening the thought of surgery can be; we also understand that surgery isn’t available to everyone in the world.  Contrary to what many believe, this is not exactly brain surgery; it is a surgical procedure to the nerves at the base of the skull.  It involves the surgeon separating the vein or artery from the facial nerve which is being compressed.  This is usually done by placing Teflon threads between the vein and the nerve.  It is a very skilled procedure, but, in the right hands, the success rate is very good.

If surgery is available to you then it's worth careful consideration and it’s best to gather all the information you can before you make up your mind.  Seeing a neurosurgeon does not mean you are committing to surgery – you are just arming yourself with the facts with which to make your decision. If you consider that the time is right for you to consider surgery then the first thing is to find the RIGHT surgeon - local is not always best. Never be afraid to reach out to other group members who may be able to report their personal experiences of a particular surgeon. There is a list of surgeons who have done MVD surgery for group members in the FILES section – use this as a starting point, but do not treat it as a recommendation for any one surgeon.

Your proposed surgeon should be able to boast a success rate of between 80-95% cure, with minimal instances of hearing loss. He or she also needs to have done a lot of these surgeries (Microvascular decompression – MVD - specifically for HFS).  We know that all surgeons have to start somewhere but maybe not with you!  Look for a surgeon who does at least one or two MVD for HFS surgeries per month if you can.

Few surgeons publish their success statistics so it’s a matter of asking him or her some very direct questions about experience, cure rates, and instances of hearing loss.  Never be afraid of doing this; your surgeon should have nothing to hide!

The most common side effects of surgery are: nausea and dizziness immediately after the surgery and almost certainly some headaches in the first few days and weeks. Some people also have taste and/or swallow problems for a little while.  No two experiences are exactly the same and so you have to be prepared for some discomfort or setbacks, particularly in the first 2-3 weeks. About 5-10% of people may suffer from Bell's Palsy at the 7-14 day point post-surgery - this does get better but it can take weeks or even months. One sided hearing loss used to be very common, but with modern methods it is much less so - it's important that the surgeon monitors hearing during surgery. Some people (5%?) have spinal fluid leakage after surgery and may need either steroids or a further surgery to correct this. A very small number of people are left with permanent balance problems or tinnitus. There are of course all the other major risks which any surgery entails.  Be aware that only about 30% of people wake up spasm-free and stay that way; most people have to wait a while for their spasms to disappear and for the nerve to heal.  Patience is a virtue!

Most people find that it takes between 2-6 weeks to feel well after surgery and it may take up to 3 months to be at full energy levels – surgery will almost certainly knock the stuffing out of you for a while. 

Hi Dan, my health is in perfect condition I had blood work done & all perfect even my blood pressure is always perfect..

I was however severely low in VITAMIN D. I’m a vegan but this started when I was still a vegetarian. And I do have a history of strokes in my family but no spasms.. so I have no idea why this started :0( 

I’m so happy to see your post and see you no longer have spasms!! 

I hope you feel better otherwise & wont have to rely on medications for other things. 

All of what you said plus more I’ve read make me petrified to ever get that surgery. I know someone who had it done & she not only got the spasms back, but she now has this constant stabbing tingly pains like painful pins n needles all on that side of her head.

😞 horrible. I don’t think that this is as common a condition to trust any doctor could do surgery & have it be perfect 

If it is perfect & spasms go away I think it’s all based on luck.. 

it’s just too scary 

Unfortunately. 

I feel your frustration I’ve also suffered from this for almost 10yrs. 

I’ve done all different dietary supplements & yes some made it lesson, but it never went away.

I do get Botox & all that does is freeze parts of my face & the spasms are still there, and when the shot is done, it makes me look & feel like Quasimodo. 

It has helped redirect the spasms.. 

but don’t give up hope. 

It’s better than taking muscle relaxers.

Look into taking this supplement Dan mentioned as well as magnesium & vitamin D.

Good luck to you :0) 

I started today.  3 grams morning and evening. L-citrullene 

The side effects of the surgery are so scary that  I have decided not to have surgery till I have tried everything else.  i just started taking magnesium, hopefully it helps me.

good luck to all, undergoing surgery or trying other avenues.

Let me know how magnesium work for you because I'm with you surgery my last resort.

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