Remitting Hemifacial Spasm - surgery or not?

Hi Helen and welcome to the forum.  Sorry you have joined this club that none of us ever wanted to join, but be assured that you'll get lots of help and support from people who understand.  First and foremost I would recommend you to join the Facebook Hemifacial Spasm International Support Group where there is a wealth of information and great support.  There is also another Facebook Group called the Hemifacial Spasm Worldwide Support Group which is also worth joining - very similar but just a different set of people.  I'm a member of both.

What you are describing sounds rather like Trigeminal Neuralgia as well as Hemifacial Spasm.  HFS is not normally painful but some people do report tinnitus alongside it.  The jaw clicks and pain sound much more like Trigeminal Neuralgia - quite a few people have a dual diagnosis unfortunately.

Botox is really the only known 'bandaid' for HFS but if it's not working then it's probably not worth persevering with.  I gave up on it when my mouth became involved in the HFS - it tended to freeze one whole side of my face and took away my ability to communicate properly.  I then just lived with the spasms until such time that the surgery seemed preferable to living with spasms for the rest of my life.  I had surgery in Bristol UK (Nik Patel) in June 2013 and have been spasm free ever since.

The surgery is not actually 'brain surgery' because no part of your brain as such is being touched.  It is actually nerve surgery at the base of the brain which is of course still pretty scary!  The surgeon makes a relatively small incision behind your ear (about 3 inches in my case), then takes a small square of your skull out (sounds scary I know), goes into a channel at the base of the skull and separates the vein/artery that is pressing on the facial nerve with some small strands of teflon.  He then glues back the square of skull, staples up the incision and away you go!  (This is of course a totally unmedical explanation!)  I was petrified and I nearly didn't go ahead with it because I am a total pessimist.  But, they got me to theatre and I awoke 4.5 hours later feeling really quite good.  I had some sickness (for which they gave me an effective medication) and some dizziness that lasted about a fortnight.  I also had headaches for 3 weeks but these were well controlled with medication.  The thing you need to be prepared for is that you will be so very tired and lack energy after the surgery.  It took me about 6 weeks to feel almost right again but a full 3 months to be back to normal strength.  If I had to do this again I would do it, but it does have to be respected as major surgery.  The most important thing is to choose your surgeon with the greatest care - the experienced surgeons achieve 80% plus success rates for a cure whilst the less experienced ones achieve 50%.  And hearing loss on one side is flagged as a major risk, but this does, in my opinion, occur more often with inexperienced surgeons.  Surgeons need to be very experienced in this particular surgery, not just general neurosurgery.

Well, you'll wish you hadn't asked, won't you!  Please do come back if there's more I can do to help.  It's my way of paying back my good fortune in having been cured of this condition!  If you want to say whereabouts you live then I might be able to point you in better directions (if you are in the UK or even overseas).

Take care and know that you are amongst others who truly understand.  Roseann

I have had HFS for over 2 years and it has been a very difficult time for me. In the end l decided that surgery was the only option. I tried acupuncture and several alternative medicines as well as the Botox - nothing worked. I am due surgery in 10 days at John Radcliff Hospital in Oxford. I just wanted to know how to prepare myself for this operation- mentally and physically? I am so please to hear about you success and wish you all the best for the future, now that you are spasm free. Take care - Cynthia

Hi Cynthia, so sorry to hear that you've struggled with this but glad that you've decided enough is enough.  It's hard to say how to prepare for surgery because we are all so different.  Most people seem to panic like mad for the weeks leading up to it and then find that they have a lovely calm just before they go down.  You will gain most reassurance by having checked out your surgeon very carefully and having reassured yourself that this person does this surgery several times every month with good results (you should expect an estimated 80% cure rate and a surgeon who is very experienced in this precise surgery on a regular basis).  I made sure I asked all of these questions before deciding to go ahead.

Be sure to stop taking any medications which thin the blood (includes Ibuprofen) at least 10 days before surgery.  It's a good idea to take ear plugs to hospital if it's anything like the one I went to!  You may want a comfy pillow to take with you or for the journey home, also some lip moisturiser,  Most people get constipated after this surgery due to the amount of drugs/steroids you need during and after the op - I ate loads of dried apricots throughout - don't underestimate this problem and take preventative measures.  It's very important to drink lots of water following surgery because you will need to rehydrate.

In terms of recovery, we are all different.  In my own case I felt quite well after the surgery but was dizzy for about a week.  The second and third weeks involved a lot of headaches (not too bad and controlled with high dose of co-codamol taken regularly).  You will be VERY tired in the first few weeks following surgery so make sure that you put yourself first and have day time naps.  On days when you feel well you will tend to overdo things - don't, or your body will let you know that you've overdone things.

For me there were two big turning points in my recovery:  3 weeks when I felt lots better and 6 weeks when my spasms went away and I felt nearly well again.  It took me 3 months to feel completely better and at full energy levels, but I was 62 so I am sure younger people take a lot less time.

Well, I hope this helps a bit and I wish you the very very best for 2 weeks time.  If you want to talk before surgery then send me a private message on here (top right) and I'll let you have my phone number.  Will be rooting for you and wishing you the same happy result that I had.

Thank you so very much for that information, you do not realise how helpful and reassuring it was.  I will most definitely check out my surgeon.  I have felt so alone with this problem and no one, although they have emphasized with me, do not really understand what I am going through on a daily basis.  Once, again thank you and I will email you privately.

Hi and congratulations on your surgery.  Where did you have this surgery and who was your surgeon if you don't mind me asking?  

There is no definite pattern for full recovery after MVD surgery but research that I have read says that if you are seeing improvement within the first 4 months then you are likely to be spasm free within a year.  Some people find that the nerve has been quite badly indented and it takes longer for it to regenerate and recover - this seems to happen most when people have had HFS for many years before having surgery.

In my own case, my spasms just disappeared 6 weeks after surgery, and I had had HFS for 9 years.  I have other friends who have taken a full year to recover fully from their spasms but they have seen little by little improvements.  I read somewhere that only 30% of people are spasm free immediately after surgery; most of us have to wait a lot longer.

I didn't do any exercises after surgery, just walked when I felt like it.  It takes time to feel better after surgery and getting enough rest and avoiding stress will be very helpful to you.  I found that 6 weeks after surgery I was feeling lots better and 90% well again.  It took me 3 months to feel at full strength.

Good luck with your continued recovery.  Look after yourself and stay positive about the longer term results.

My name is vivian, im 26. I live in canada. I am so happy to see you recovering day by day it is very exciting. Recently i felt twitching at my left under eyebag, it lasted for few days and it stopped. And then the left side of my nose twitched, again a few days it stopped. Now i dont know why it seems like its coming back again. I tried purpously contracting my my muscle and see if the twitching would come back, sometimes it would sometimes it wouldnt. I am so worried. it is only one side of my face. I read so much on the internet, it seems like i fit into every bullet point. I am going to see my doctor and get a referal to see a neurologist. Do you know what test will be done to confirm whether or not i am suffer from hemifacial spasm? Thank you. 

My name is vivian, im 26. I live in canada. I am so happy to see you recovering day by day it is very exciting. Recently i felt twitching at my left under eyebag, it lasted for few days and it stopped. And then the left side of my nose twitched, again a few days it stopped. Now i dont know why it seems like its coming back again. I tried purpously contracting my my muscle and see if the twitching would come back, sometimes it would sometimes it wouldnt. I am so worried. it is only one side of my face. I read so much on the internet, it seems like i fit into every bullet point. I am going to see my doctor and get a referal to see a neurologist. 

Hi Vivian.  So sorry to hear you have this worry.  This does sound like the way in which HFS starts, BUT it is also something that happens to everyone from time to time when they are stressed - so, it's not necessarily HFS!  

For those who do have HFS the progression can be different from person to person.  Most people start with intermittent flutters under the eye and few people also have a nose twitch.  For some people the under eye twitch continues for a number of months or even years before the cheek and mouth begins to pull into a full spasm.  In my own case my spasms were never constant but they were triggered by tiredness, bright light, eating, laughing or cold.  After 9 years my face was also spasming at night and I knew I couldn't put up with it any longer.  My surgery was relatively easy and completely successful.

In terms of tests, it is unlikely that you would be sent for an MRI scan at this early stage (if it is indeed HFS) but you may find a sympathetic doctor.  The most important thing is to see a neurologist or neurosurgeon who knows about HFS - there is a lot of ignorance about this condition in the medical profession.  You need a neurologist who can order the right MRI scan also interpret it properly - it is not always possible to see the compression of the 7th cranial nerve on the MRI, but what it will do is rule out any other causes of your Hemifacial flutters.  The great expert in Canada is Dr Kaufmann in Winnipeg I believe - he regularly performs surgery with great success and I believe there is a YouTube video of him talking about it.  But, you are nowhere near needing surgery - you probably need to wait and see how and if this progresses.

I think I first went to my doctor about 3 months after the under eye flutters began and thankfully she recognised it as HFS.  I then had Botox for a couple of years and this controlled the eye quite well.  Botox is usually the first recommended treatment for HFS, with little injections around your eye every 3 months.  It works brilliantly for many people but not so well for others.

OK, hope this hasn't worried you more.  In your shoes I would not be panicking and jumping to conclusions about a diagnosis.  Take one day at a time, roll with whatever that day brings and just get your doctor to check out whether he/she thinks it's worth doing further tests.  This may not be HFS and may just be a passing thing that goes away again.  If it is HFS then be reassured that there is a cure and you have a great doctor (and probably many more) in Canada.  Take care Vivian.

I am not sure what happens in Canada Vivian, but here in the UK we are not usually considered for surgery unless we've tried Botox and found it unacceptable.  Of course, with private insurance you would have any choice you wanted,

Hi again Vivian.  Please be reassured that I had many ups and downs and despairing moments.  It's much easier to be positive once you're cured!  But, first things first for you and a diagnosis is the best way forward.  If you have HFS then information is power and you can beat it for sure.  I would strongly advise joining the Facebook Hemifacial Spasm International Support Group if you would like to connect with more people from Canada and around the world in this HFS community.  Lots of lovely people seem to have HFS and in all age groups too.  Try not to run away with your thoughts and take one day at a time, just dealing with 'what is' rather than 'what might be'.   I am the world's biggest coward so if I can sort it all out so can you! 

Surgery was in India (Mumbai) India best neuro surgeon,yes you are wright about recovery, its take time as my doctor said, i will be in passions, and hope it will be ok time by time, surgery was hard for me first four days lots of pain and weakness, but now fill fresh, only movement of face and eye is there but less compare to pre surgery.

I am takin complete rest, only light work including walking is doing. Actually my spasm was started since last 6 year in 2010, initialy it was limited to right eye only and then time by time increased and before surgery it was tomuch/ complete right side fase affected, and movement was almost 18 hour in 24 hour, now after surgery movement decreased almost 50%.

before surgery i was taken botox two time but not benefited, result was only for 3 month.

I hope this will help other who really have this problem.

once I will ok I will share my result,hospital,doctor name and cost etc.

thanks... Kanabhai

I think there are a lot of people in India who would benefit from knowing your story and details of your surgeon too (if all proves to be successful).  On the forums I belong to there is not much knowledge about surgery or doctors in India.

Wishing you patience as you head towards complete recovery.  I wish you well, and soon.

Thank you very much for your wish and giving me support.

I will keep patience.