New Findings

Brain and nerves
1

Driving a car with the affected eye can be difficult, especially if there is some tearing as well.

However I discovered that keep the body straight and pulling in the chin can stop the eye closure. I wonder if anyone here with the same problem could give it a try.

Wearing dark glasses should help too as bright light invariably exacerbate the spasms.

I am also trying Voltaren double strength for the C5 vertebra, which is opposite the Adams apple in front. I believe some arthritis is present there.

That's all for now.

2

Hi Windhurt,

I had surgery , MVD, almost 4 weeks ago.  The spasm had gotten so bad that I couldn't take it anymore.  My left eye was closed constantly.  I awoke from the surgery spasm-free!  I did not lose my hearing and  feel great.  I had some dizziness when I first came home from the hospital and have not driven yet. I hope to drive at 6 weeks post surgery.  I wish I had the surgery 10 years ago.  Hemi-facial spasm was ruining my life.  I did not want to go out because the left side of my face was in a constant spasm.  I received Botox injections for 9 years.  The last injection in 2013 froze the left side of my mouth and left my face drooping.  Making the decision to have MVD  was very difficult.  I live in the United States in Philadelphia.  I found a wonderful neurosurgeon who felt there was an excellent chance to fix the problem with surgery.  He explained the risks of surgery and I made the decision to go for it.  I'm so glad I did.  I feel like myself again.  Best wishes to you.

Sue

3

Here I post my own discoveries dealing with controlling the spasms.

I am well aware about MVD and the success rate and disappointments. Not many people can afford USD 15K plus airfares/accomodation to Pittsburg for operation. Botox at best is like trying to stop the flow of water gushing from a garden hose with the thumb. Also expensive at USD200 every 3-4 months, it palsies the face and cause a lobsided smile beside being quite painful especially around the eyes and lips.

Yesterday I found some control pulling the head and chin back while driving. Pushing the spine forward with the backrest of a chair combined with head back helps too. These are reciprocal actions that help any vertebral slippage in the neck. In some of my earlier posts, I did mention change in kyphosis and subluxations.

The head is very heavy, and prolonged head down in work weakens the neck muscles and can cause some displacement of the neck vertebrae. Sorts like golf could lead to this condition too. Long hours of practice with head down and wrong posture. I think it was said by David Leadbetter that "Golf is a chiropractor's dream" , but that is fine, just golf and then see chiropractors as long as there is enjoyment.

How this leads to a change in the arterial pressure of that vessel targetted in MVD operation is still beyond my understanding. MVD address the pulsation end of the vessel while Botox address the nerve ends. Both does not address the CAUSE of HFS, so I must persevere in finding the cause. It is unlikely to be caused by a worm in the facial nerve or a bunch of viruses.

In my mind any lessening of the internal carotid arterial pressure would help too.

Good on those who benefitted from MVD. Age and finance, risks of failures and recurrence, and worse...death are in the minds of many HFS holders too. Better make it sound like a degree!

In the meantime, set your desktop higher , middle of screen at eye level, and keep experimenting.

4

Dear Windhurt,

I had my surgery in Philadelphia, Pennsylvania.  The surgeon who performed the procedure said that an artery was pressing on my facial nerve in two places.  MVD worked for me; however, I know that it is not the answer for everyone.  I am 63.  I couldn't imagine living with the spasm and eye closure anymore.  So for me the risk was worth it.  My brother is an orthopedic surgeon.  He has a patient who had MVD done in Pittsburgh, Pennsylvania.  It did not relieve her spasm and left her with a cerebral spinal fluid leak.  I guess I was lucky.  I am still recovering but am enjoying being able to smile again.  Botox injections robbed me of that smile.  I am counting my blessings.  Here's hoping that doctors figure out the cause of HFS!  My best to you and others suffering from HFS.

Sue

5

Hi, I'm new to the forum.  I was diagnosed hfs two years ago. My left eye started twitching 3 years ago and lasted about half year, then stopped. I thought it was caused by stress from work and longtime using computer at that time(I’m industry animation designer). But the happiness didn’t last very long. It comes back again after several month spasms free. It’s more severe this time.

I did the MRI, and visited an neurosurgeon who said I’m fine and no need to do the surgery cause the risk is too high.

I did the scalp acupunctures for 2 months which did help me relax my brain. I also learned how to relax by deep breathing. But my spasms still getting worse. , especially when I’m nervous and during my Physiological period.

I’ve been keep thinking about the cause of HFS: I have an car accident 4 yrs. ago; I’m in the mid 40’s; I use computer for a super long time every day. And I start to make the following guess:

First, I have bad posture which leads to the cervical oppression;

Second, my Artery starts to sclerosis, which means less elasticity, so it is easy to be triggered by blood pressure.

So I went to see a Orthopedics doctor and start aerobic exercise every day. After a month, I saw the result. I still have spasms every day. But it is way less than before.

I think the exercise did the greatest contribution.

Here is something I do to help release the spasm: drop/relax my jaw whenever I feel the tightness of my back brain; deep breath; blowfish; relax your mind consciously; good rest;

Forgive my poor English, It’s so hard for me to write this in my second language. Hope I didn’t confuse you.

I agree with Windhurt in here ‘theory’ in many ways. And wish we have a hope to recover without MVD.

6

dawnsriver,

You are perfectly understood in your writing and as a second language, your level is commendable!

I am glad you are finding ways to alleviate the suffering. HFS affects our self-estem more than anything else. There are people with uncontrollable twitches in the forehead and face that are different to HFS patients, and I have seen them completely oblivious or unconcerned about it. Parkinsons is worse..

All I am doing here is share some of my experimentations and theories, as you labelled it. In time there will be more from other people and we will benefit from the sharing.

I have my own Osteopathic Doctor in Singapore, and will definitely discuss with him to have the upper thoracic thumped forward a bit. In the meantime, I shall strengthen the neck muscles that support the head with all those rubber bands available nowadays.

Cheers.

btw...blowfish closes my left eye sad

7

Hello People,

I am not getting over-enthusiastic about posting my findings if I am not finding results from my own efforts to beat the surgical choice. I just hope some of you in the same predicament try out some of the procedures and wait a month (including myself, as I've just started) to see if there is better control over the problem. Well if you have to wait 6 months for surgery, it might be worthwhile spending some time experimenting.

I sometimes wonder if HFS is a disease of civilization, the age of comfortable settees, laptops and computers , and whether this condition exist in the old, old medical textbooks.) Well I cannot even find it in a textbook I have called "Myofascial Pain and Dysfunction" by the famous Janet G.Travell and David G. Simons (1983).

Yesterday I started what I set out to do:  prop the thoracic vertebrae forward and cervical vertebrae back and to help the cause, I have set up 3 bungies.

The middle short rubber band is for exercising and strengthening the muscle behind the head. The longer ones on the side is to squeeze the shoulder blades. This will help expand the chest as well and help free up some tight muscle in the upper thorax. Note also the towel bar installed to the door frame, an adjunct to stretching.

Car seats are generally uncomfortable and will need some extra supports.

That's all for now.

Cheers.

 

8

http://en.wikipedia.org/wiki/Hemifacial_spasm

Interesting to note that :-

1.The earliest descriptions about hemifacia spasm is by Shultze in 1875 and Gowers in 1899. The etiology of hemifacial spasm and location of the abnormality have been debated for more than a century.

2.Three theories exist to explain the facial nerve dysfunction found in hemifacial spasm.

3.Excellent to good results are reported in 80% or more cases with a 10% recurrence rate.

4.Death or permanent disability (hearing loss) can occur in 2% of patients of hemifacial spasm.

neutral

9

Hi People,

I don't want to sound over-elated about the experiments I have started, (this, by the way is Day 2 ) but am pleased with how it all went today on the golf course, full 18 holes.

My eyes did not twitch too much. Very encouraging.

So here goes another picture of me using a Reebok Exercise Rubber band for exercising the muscles behind the neck. I also used the round band to do some traction. There was quite a bit of crepitus when I rotate the head, but after some time, the sounds vanished.

Please don't put too much tension and 2 minutes will do.

I also repeated the squeezing of the scapulae.

In passing, a home cervical traction kit uses a pulley and a bag of water up to 15 lbs prescribed by an orthopedic surgeon to me for cervical spondylosis (neck pain).

Checking my textbook, the vertebral artery pass through the scaleni muscles, so maybe tight scaleni muscles kink the artery to the head with resultant higher bllod pressure. Just a theory, or conjecture, but no harm.

I would suggest readers to view the diagrams of the vertebral artery in Wikipedia.

http://en.wikipedia.org/wiki/Vertebral_artery

purely for interest sake.

So sorry I cannot post the pictures today, the upload buttons do not seem to be present today.

I hope the moderator will notice this post and reset the buttons at the top right hand corner for posting pictures ( very strange!)

In the meantime, cheers...again.

10

Windhurt,

I have been reading your comments and am wondering if you are a doctor or chiropractor.  You frequently use medical terms and recommend exercises that imply you are a physician.  I sincerely doubt that any exercises can inhibit the spasm caused by HFS.  It is an involuntary response.  I was never able to control the twitching in my eye or face, and while Botox injections did work for a few years, eventually the spasm became too great and could not be controlled.  I believe that the only option for HFS is the MVD surgery. 

Sue

11

Hello Sue,

I hope you are well after MVD surgery and wish you a long lasting recovery. You are lucky if you have not lost any hearing etc that I have read about.

What I hope to do here is to help some people with an aversion to surgery gain some control and alleviation of symptoms.

FIY, I am a retired dentist who also golf a lot with a longstanding injury at L4/5 due to heavy lifting at 22 yrs old - a condition called spondylolisthesis, albeit not severe. Coupled that with 30 years of head down with extended rotation in long dental cases, I have defeated all the pains inflicted by those 2 conditions, so I am not ready to lie down and be defeated by HFS.

Hence my hobby and reseach into a condition not well understood yet.

I hope some people out here will persevere and collaborate in this research, and join all these doctors, surgeons, osteopaths defeat this puzzling condition and obviate the need for uncomfortable, risky surgery.

Nobody should ever ponder suicide or lose their life over a condition that affects, if anything, self esteem.

Cheers.

 

12

Hello All,

I have posted under Cervical Spondylosis forum in this website,

https://patient.info/forums/discuss/cervical-spondylosis-cervical-traction-301507

as I am beginning to suspect that hemifacialspasm has an etiology similar to Cervical Spondylosis.

Do read it as my twitchings are getting better, having added cervical traction to my search for the cause of HFS. There are pictures attached.

I will not be embarrassed if a total cure for the twitch is not achieved; some control over it is all I hope for .

Cheerio.

13

Glad to find I did not have eye closure when I drove with that swim float as back support this morning.

Seems lower thoracics need better support, but cure is still a long way to go.

Oh well, at least gained some control over HFS smile

14

In Search Of Non-Surgical Way to find Cause and Cure for Hemifacial Spasm:-

Day 5 : After 14 lb traction, the neck muscles were a bit sore.

Day 6 : Rested the sore neck muscle; In the evening, gentle 8 lb traction with head rotations. 8 lb tension is measured with the pocket balance (pic). Also did leg lifts lying flat on the floor much like swimming. Did push-ups to squeeze shoulder blades. Simulating a dog, did head lifts to exercise back of neck muscles plus rotations. Also did “Muslim Prayer” position (Frog”).

Day 7,8 : Evening: Gentle traction again with 8 lb tension with Reebok No.3 Rubber Band (the longer band) .

*Repeated Day 6 dog and pushups. Did more shoulder blade squeezes holding the two bungees pulling down behind the back adding upward head rotations with each pull.

Day 9 : , Morning : Single Loop traction with Reebok sitting on the floor (10 lb) - 3 mins . Plus Combination of arms hanging on bar with simultaneous traction with double short loop traction 2x (13 lb) … 9 seconds 2x.

Evening: After 18 holes golf, repeated above. Eyes did not close/twitch much all through the game.

Laid the foam roll on the floor and rolled the thoracic area. Lying on the hard floor also help push thoracic forward and straighten it a bit. BP: 125/79 Pulse 80

Observation : It seems that the better the spine shape, the less the twitching. When there is less spasm, the eyebrow on the affected side drops down, to the point of having ptosis (eyelid droop in older people) but when the face is tight, the eyebrow is 5-7mm higher.

Day 10,11 : Continued the traction; 3 minutes with pulling and nodding. After checking out on the anatomy of the atlanto-axis joints (C1-C2) and using tensions varying from 10-15 lbs, I find it safe and head rotations free up the compressed joint and give mobility.

I smear Votaren cream double strength at C1-C2 at the back of the head after tractions.

Overall, I have gained better control and less twitching now. Improvement is 30%, but a big step to meeting people and making eye contact. Elevation to esteem : 45%.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Further posts as my logs continue and fingers crossed for further improvements, guys. Cheers !

*** sorry can't find buttons for uploading pics! Will do it later when the buttons reappear.

15

Seems FireFox is better than IE.

And here are the pics. Cheerio.

16

Hi, WindHurt,

Glad to know your improvement and thanks for all the pictures and info you provide. it is very encouraging. 

Although the cause of HFS is defined unknown so far, but there must be a cause and I believe it is kind related to the dislocated neck spine and aging.which cause the pressure. 

I don't know if excersise can cure the HFS completely, but for me , it definitely helped a lot.I do have a big improvent after I started excersice consistently ( 4 time a week, 1 hr zumba or Ujam every time), i have better control of it now, I can talk to people with eye contact most of the time.

I can bear it so far even it is completly gone. And wish getting better!

Cheers!

 

17

Dawnsriver,

You are the only person who is on the same experiment and it encourages me too!

The fact that the world is treating the end result does not stop me (and you) from searching.

Lets hope others will join in and post their findings as well.

Today I included a bit of face yoga. Turning my head away from the affected side and poking out my tongue in the same direction for 30 sec.

It helps to find calmness.

I am also doing face contractions to strengthen the

weak muscles left by botox.

Yes...I suspect the spine shape is to blame.

Sometimes surgery create more imbalances. I know of a doctor who had 2 ops for neck pain...his hand wasted away, and then his legs, and now he is on wheelchairs.

Best regards.

18

Hello People,

Have not posted for quite a while. Since last posting I have switched to Supine Traction with good results. The pic shows where that 2 foot bungee is hung.

I attach it behind the head in front of the ears when starting and then behind the ears for bit more tension. My feet are hooked on the linen band at the other end of the bed. It can help increase tension.

Nodding, wiggling, head rotations, plus pulling on the shoulders all help to stretch out the spine. I do 5 minutes twice a day, and it has helped control the HFS very well. I hope you people are trying my method.

Be patient. You will hear sounds when the head rotate. It frees up the adhesions (the tight micro-fibers) throughout the spine. In time you will find improvement and be happy with mild spasms. You will gain confidence going out with friends.

The Supine position is more gentle than the vertical one I used before.

Also, I take a tablet of Glucosamine, a tablet Norwegian Cod Liver oil, and Neurobion (Vit. B1, B6, B12) everyday. They will help blood circulation and help the injured nerve (Facial VII). And keep your BP down to 120/80 or bit higher never mind.

People with Cervical Spondylosis, neck pain, fibromyalgia could try too.

Good Day to you. Cheers.

 

19

Hello People with HFS,

I'd like to share a picture. It shows the blood supply that runs closely to the spine. I can imagine any notching of that branch running up the spine would increase the blood pressure in the head!

Still working with traction to untwist my neck,  I find that my HFS has improved by 50% but the eye on the affected side is photophobic. It triggers blepharospasm. Smiling, blowing, even eating can cause a short-lived (not prolonged) fluttering as well, but definitely I feel that I have gained a fair amount of control of HFS.

Today I add self facial massage with various balms to test if it can stop the smile trigger.  Lets hope so. This is done while on the traction to save time. And traction on the chin side (not neck) is also easy when lying on the stomach. It stretches the sternomastoids and other muscles attached to the sternal notch/rib cage (scaleni muscles)  to further free up the spaces between the vertebrae C5-C6.  C1 and C2 is freed up when the bungee is on the occiput which I described in earlier postings.

For photophobic trigger I wear darker glasses (poloaroid) to avoid over-exposure. Even the lowest brightness setting on my desktop trigger a reaction, so soon I will have tinted reading glasses. I sometimes wonder if these triggers are cause by side-effects of Botox. Only time will tell confused

Thats all for now.

20

Hey Dawnsriver,

Aerobics is good and mentioned here:

http://spinephysicians.org/mdprintart.cfm?nid=33

" Exercise. Exercise is critical for long-term recovery. A rehabilitation program should include stretching, postural and strengthening exercises, and aerobic conditioning. Stretching reduces the potential for trigger point reactivation. It should be both passive and active. Posture-enhancing exercises improve musculoskeletal alignment, thereby enhancing balance and promoting relaxation (5). Strengthening and aerobic conditioning improve not only strength and endurance, but also blood circulation in the muscles."

Less trigger points, less spasm seems to be a good assumption for us for the time being, and btw, my condition is getting better.

Merry Xmas.