Wonder if anyone else experiences long remissions from their HFS? I can sometimes get up to 3 months off before it comes back and this is bliss. I have been offered the MVD surgery at the Frenchay in Bristol and am agonising over whether I should or shouldn't. On a bad day it's yes and then when in remission it's no. Another question is whether anyone else has undergone this surgery at the Frenchay (NHS Hospital) and how they found the whole experience. Thanks if you are able to help me on this.
Hi Roseann,
I underwent my MVD surgery 3 months ago, although not at Bristol, it is unusual to have these long term remissions, is your doc sure it IS hemifacial spasm ? I have had this problem for over 6 years now, and if I get 1 good day, then that is bliss !!
There is a link to this condition in the forums, which a few of us have contributed, it is worth a read, all the best.
Sean.
Hi Sean
Thanks so much for replying. My consultant (Mr Patel at Bristol) says that he does come across those who experience remissions, but I've yet to hear anyone else report this on any of the forums. I have had an MRI and it does show a loop.
Hope your surgery has done the trick - how good would that be. This is one nasty condition which only those who experience it will quite understand. My life has changed dramatically on account of it and the once sociable Roseann is now much quieter and oft reclusive. All best wishes and thanks again for taking the time to respond. R
Hi
I had MVD surgery in Leeds in Dec 2010 and it is the best thing I
ever did!!
I had suffered from Hemifacial spasm for nearly 6 years prior to this and it really was the bain of my life!
The very thought of having my photo taken sent me into a panic and I constantly covered my face with my hand.
I fully understand how you feel....
The surgery was a complete success and despite the first 2 days
of feeling really groggy and sick, I had NO PAIN at all afterwards as the wound was numbed.
I was in hospital for 5 days and had the best care from the consultant. I was off work 8 weeks to recover and I can honestly say it has changed my life.
I am much more my old cheery self and have now had umpteen photos taken........the change is unbelievable.
I no longer have ANY spasms or twitches and my smile is back to normal!
I wish you all the best whatever you decide but I would certainly encourage you to have it.....it's definatly worth it.
Linda
Thanks Linda, that's really heartening to hear from someone who's been there and got the tee-shirt, as well as being spasm-free! I am honesly petrified of the operation, but it would be wonderful to get my life back as you have done. Totally empathise with all you say and am just delighted that you've come through it all and are you again, smile and all. Very best wishes and long may it continue, Angela
Hi Linda,
It's great to hear that your MVD surgery was a complete success, congradulations! May I ask if the spasms were gone the moment you woke from surgery or how long afterwards? Thank you in advance.
Hi Angela,
Thank you very much for your kind wishes on my discussion thread. I can only say that you will know when the time is right for you to opt for surgery, without persuasion from anybody. The facial spasms cause not only embarrassment socially but also affect one's concentration level in carrying out everyday tasks.
Other than the skill of the surgeon (the most important factor of course), you may also help yourself in the recovery process (should you decide to go ahead with surgery) by getting in the fittest physical state and adopting a healthy diet. There are many websites that advise on the right diet pre and post surgery. I have been taking brisk daily walks uphill/downhill for 1.5 hours months before the surgery, and eating lots of fruit/vegetables/nuts.
I can honestly say that this brain surgery is less scary for me than a visit to the dentist to extract a back tooth under local anaesthetic! I suppose the worst part was the waiting, especially on admission day when I received the morning call from the hospital to inform me that there is a bed for me and I should check in around 6pm. That was one of the longest days for me.
I wish you all the very best and if you have any questions, those of us who had the mvd surgery will be happy to share our experiences.
Kind regards
Leon
Hi Leon
Thanks so much for your empathy and good advice. I am quite badly out of shape (high BP, overweight, not exercising because the spasms are worse when mobile etc) and I think you're advice is spot on - if I felt better generally I might be braver and more optimistic. I can just imagine what a long day it was before your evening surgery and there must have been a great temptation to 'do a runner'. I am quite brave when awake and in control (don't have anaesthetic at dentist) but am **** scared of going under.
It's absolutely brilliant to receive such encouragement and support via this forum and it's clear that people who suffer from HFS (and I use the word 'suffer' advisedly) are all really good people. Heck, I feel a theory coming on............... only nice people get HFS!
Take good care and so so so hope that you will end up spasm free and fully enjoying life again with a broad smile. Angela (aka Roseann)
Hi Leon
Thanks so much for your empathy and good advice. I am quite badly out of shape (high BP, overweight, not exercising because the spasms are worse when mobile etc) and I think you're advice is spot on - if I felt better generally I might be braver and more optimistic. I can just imagine what a long day it was before your evening surgery and there must have been a great temptation to 'do a runner'. I am quite brave when awake and in control (don't have anaesthetic at dentist) but am **** scared of going under.
It's absolutely brilliant to receive such encouragement and support via this forum and it's clear that people who suffer from HFS (and I use the word 'suffer' advisedly) are all really good people. Heck, I feel a theory coming on............... only nice people get HFS!
Take good care and so so so hope that you will end up spasm free and fully enjoying life again with a broad smile. Angela (aka Roseann)
Hi Leon,
As you are aware, I have had my MVD, and still having my spasms.
People reading this valuable thread must realise, that this is major surgery, apart from the positive side of having a succesful surgery, this can also have very serious risks, and I would rather visit the dentist any day ! the HFS site, which I found to be way out of date, has many people having had this surgery, many a success, but what one must also realise, many not successful, and some horror stories of complete hearing loss etc etc, just wanting to make people aware that's all, as would there surgeon in any case.
I hope all of you, waiting, or just thinking about surgery, will go for it, as it is a must eventually, Botox is a waste of time, it only works for a short while, go for the surgery, and I wish all of you the very best outcome...cheers.
Sean.
Hi Angela
Thanks for your kind comments. I was spasm free immediately.......the consultant checked every day and was so understanding as I
was waiting for them to come back as I just couldn't believe they
were gone!
I forgot to mention that I had to stop the Botox injections for 8 weeks before the operation and at my post op check 2 months later everything was fine and I was discharged
Best wishes for the future
Linda
Hi rosanne,I also find that I only get relief for 3 months maybe 4.Funny I just did a round of botox the start of january and I am spasming so much lately that I have spun down into recluse mode. I am in the middle of going for job interviews and am terrified because they always comment and ask me if I have bells palsey,so hard to face the public sometimes.Ready for disability if I don't get hired soon.
Hi Lilith
I so empathise with what you're going through, and feel for you concerning those job interviews. It's bad enough coping with HFS when you are in a safe employment environment, but hideous in a new one or in an interview situation. I went through something similar a couple of years ago and found big meetings so hard to handle. It's like you can never rely on your face to do what it's supposed to do, and just when you should be looking pensive or concerned you start winking at everyone - it is rubbish, and it's really irritating when someone says "don't know what you're worried about, we hardly notice it." I was fortunate enough to be old enough to retire (in relative poverty!) but it must be so tough for you guys who have to keep punching through it in the workplace. It's also so so tiring eh. But, we mustn't give up and let it beat us - there is a potential cure out there and if we're brave enough to have the op (maybe more than once, ouch) then there really could be light at the end of the tunnel. But, that doesn't stop me from being scared stiff of course. And, I know what you mean about recluse mode - it's easiest, but it's also depressing. I'm all for continuing to be sociable but only with people who make me feel safe and if I spasm out of control they talk about it rather than looking away or copying my facial contortions.
Sorry, I'm prattling on. Take good care and don't go under those covers..... cheers, Roseann
Hi Roseann,so great to finally talk to some one with the same HFS, I want to say thankyou for the moral support.I know that being around my friends that know me and understand my condition is easier than meeting new people.I am an beauty therapist by trade and have been judged and made fun of by the younger pretty girls who don't get what it's like to live with this.My last job which was for 9 years of employment in one of the top spa's in Canada cut my hours down to the point where I had to look elsewhere.I think that they thought that I was on something because of the spasm's.Great way to get ride of a person but I did take it personally.Funny how I was one of the top esthetician's working with HFS but I was always on top of my game professionally.I just need to be around people who understand and don't judge the situation.I will be looking for a support group in my area show that I can get through the hard days living and coping.I feel like there is a camera clicking away in my head all the time.LOL
Thanks for sharing all this background Lilith. What can I say, other than I really feel for you. In your line of work this must be a double blow to have HFS, and kind of makes one realise how shallow beauty and beautiful people can be eh. I was a social worker and found that I couldn't do the job any more because I looked more in need of help than my clients! HFS makes one realise how much one needs one's smile and one's face for communication, and you only miss it when you lose it I guess. Sounds like surgery might be as much of a need as an option for you because you're too young to give up on yourself. My consultant was amazing and said to me exactly what I had failed to put into words/thoughts myself........... He said "it sounds like this condition has emotionally blunted you". He could not have put it better, but what won't be blunted is my spirit.
One last thing that might possibly help you. I find that when I take EXCEDRIN Migraine tablets (produced in USA) I get a couple of hours relief from the spasms. Might be worth a try for you?
Very best wishes, Roseann
I first experienced the gradual onset of hemifacial spasms in 2009. By January 2010 the tightening had become annoying, and it had begun to spasm and pull on the lower edge of my eye. I went through the usual tests with a neurologist, whose suggested treatment was either anti-spasm medication or botox injections. Patients' comments about side effects from these treatments convinced me not to try either. Instead I examined all possible causes for my condition and pursued multiple ways to alleviate the spasms. I now have my condition almost completely under control. I still feel a slight tightening in the left cheek, which takes me back to the beginning symptoms three years ago. I'll describe what I have been doing.
For temporary relief: ibuprofen and Health Concerns (brand name) SPZM (Shao Yao Gan Cao Tang) Herbal Supplement 1875 mg per serving, available for purchase on the Internet.
Eye Mask: Merely closing the eyes tightens the cheek muscle and increases spasms. I purchased an IMAK "EyePillow" (designed by an orthopedic surgeon) with ergobeads that can be either frozen or warmed in the microwave. It's heavy enough that the pressure of the beads aids in keeping the eyes closed, lessening the tightening of the cheek muscle, hence lessening the spasms. I've found that using it frozen when I first go to bed stops the spasms completely. This allows the cheek muscle to rest more through the night and helps lessen the spasms in daylight. Warming the mask and using it for five minutes periodically helps also to relieve dry eye symptoms.
Stress: Anything that causes the cheek muscle to tighten makes the spasms worse. I've found that by consciously dropping my jaw the spasms lessen. I can also consciously attempt to lessen the spasms by relaxing the face, using the cheek muscles less. At night I now wear a mouth guard regularly since I have broken teeth by grinding them in my sleep. This no doubt also contributes to a real tightening of the cheek muscle.
Dry Eye: Use eye drops regularly.
Long-term relief: During forty years of marriage I have always slept on the right side of the bed. I'm in the habit of turning to my left side when sleeping. I noticed the spasms are much worse when I do that. I started sleeping on my back, and with with my head tilted slightly to the right the spasms lessened. I also now turn to my right side, tilt my head slightly left, and the symptons lessen. I now believe that compressing the left side of my face into a pillow over forty years contributed greatly to this condition. After less than a year of sleeping on my other side, the hemifacial spasms have disappeared almost completely. I do believe that the treatments mentioned above helped to bring my condition under control, but changing my sleeping habits seems to have been the most significant contributor to my recovery.
As per my opinion for hemifacial spasm non-surgical treatment is the better option. One injection of botulinum toxin which is given by a neurologist. This toxin is injected into the particular muscle which is affected. I have not gone through surgical treatment.
Hi Rebecca and Jeremy
Thanks so much for your comments and particularly for all of these helpful hints Rebecca. I really appreciate all of these suggestions and can definitely see the validity in them.
Unfortunately, since first posting on this site things have been very up and down for me. Last year I enjoyed 8 months of total spasm free relief with no apparent cause for the remission. Then, my daughter had some worrying health problems which stressed me out and almost immediately the spasms returned (last June). Since then things have gone from bad to worse and I now have regular total occlusion of the right eye with the cheek and mouth spasming in rather dramatic style. I also have intermittent long lasting spasms throughout the night no matter which side I lay on. I do find that trying all sorts of different head positions sometimes brings relief but nothing is at all foolproof. Life is currently quite tough and I have gone into recluse mode, avoiding most social interactions. For a former social worker that's hard!
I've finally decided to bit the bullet and go for surgery, but I am not sure how long I shall have to wait. Needless to say, I am petrified and if there were any alternative I would be trying it. The botox injections were unhelpful to me (I couldn't cope with being asymetrical and it was as bad as the spasm itself) and it also left me with a caved in cheek on the affected side. The only medication which has helped me for a couple of hours is an American painkiller called Excedrin - it gave me a few hours relief, possibly due to the caffeine content. It's currently out of production so there's not much else that's helped.
I really hope that you will both continue to find relief in the various methods you're trying. Anything is worth a go and I shall certainly be looking into Rebecca's suggestions and keeping my fingers firmly crossed. But, I somehow think the condition has gottent he better of me after nearly 9 years and I may just have to be very brave and see if I can come out the other side with my life restored.
Very best wishes and thankyou again, Roseann
Roseann, After 9 years I can certainly see why you are very discouraged. While you're waiting for surgery, however, you might find some relief in the methods I mentioned. I was also very discouraged when I read numerous reports that this condition is incurable without surgery, but I also noticed that no scientific studies have pinpointed the cause of hemifacial spasm. That is what most encouraged me to try to find all possible contributors to my condition and to address each one individually. I found that the frozen ergobead face mask allowed me to sleep through the night almost immediately. That added rest made facing the day much easier. During the day I used ibuprofen at the maximum suggested level three times a day along with the SPZM herbal tablets at maximum dosage (5 tablets four to five times a day at first, then gradually decreasing as the spasms lessened). I had no side effects taking SPZM, though some people experience increased bowel movements. SPZM is a mild anti-spasm herbal formula.
As you mentioned, stress adds to the problem, and just worrying about the spasms is stressful, so anything I can do to relax the facial muscles seems to help alleviate the condition: dropping my jaw whenever possible, spraying my face under hot water in the shower, sipping wine at dinner, using eye drops regularly, turning off lights that glare in my face, using the computer less to reduce the effect of monitor glare, looking downward when possible and focusing on dark objects. It has taken over a year for all of these factors to VERY GRADUALLY lessen my spasms to the point where I no longer have spasms, just a tightening of the cheek periodically. I urge you to be patient, don't get discouraged, and if none of these things change your condition significantly, perhaps your waiting period for surgery would be somewhat more bearable. Best wishes, Rebecca
Thank you again Rebecca for more encouragement towards these self help methods. I shall definitely be ordering some of those SPZM tablets and shall keep my fingers firmly crossed. It's really kind of you to share this information, and might be worth copying it to Leon's thread which I think is entitled 'Surgery 8 days ago'. We have quite a community on that thread and it's always interesting to hear of other people's experiences and successes. It's certainly helped me to know that others have felt similar to me and have reacted in similar ways to this annoying condition. Leon (YKL) is a mine of useful info re the scientific stuff and past studies. I also found Professor Coakham (Spire Hospital, Bristol) very helpful in explaining the whole thing to me - he seems to be the expert in the UK.
Take good care of yourself and I so hope that your methods will bring long term relief. I seem to be the only one who has had long periods of total remission, and so I hope you will be joining me in this lucky group! All best wishes, Roseann
Hi Rebecca, you are really brave. It’s really great to go with this much of pain and encouraging others. I really appreciate you. Even i got encouraged. Thanks