Hemifacial Spasm..There are others!!!

Posted , 13 users are following.

Hi,

Firstly, can I say how chuffed I am to find that there are many other people suffering from HFS, for a longtime I have felt alone, but also sorry that you're going through this aswell.cry

I am a 35 year old living in the UK and this is all started, it started with a slight twitch in my lower right eye, then over time it became very annoying.  I consulted my GP who told me it was "tiredness and stress, and would solve itself" I have now had this problem for three years and during this time the spasms became worse, no longer just in my eye, my whole face would spasm, my nose, cheeks and mouth, quite serverely. After changing GP's i finally was referred to a neurologist and the appointment took about 3 months to come through.  As i sat in the waiting room, the spasms were doing the norm and then typically when in with the consulant nothing, he referred me for an MRI.

The MRI results were clear, leaving me with the explanation that I have a "Primary, right hemifacial spasm".

We spoke about the treatments on offer, however the consultant said that he didn't think that the symptoms were severe enough to undergo surgery.

A few months later it just felt that the spasms were getting worse, i didnt like going out meeting new people or putting myself in any situation that would cause me to feel nervous as this all contributed to the symptoms.

I went back to my GP, who referred me once again to see the neurologist.  Once again we spoke about the treatments available and decided to give botox injections ago, again another referral as my local hospital could not offer this treatment.  

I had my first lot of injections nearly three weeks ago, they put one in each corner of my top and bottom right eye lids and two injections to the side of my nose between my cheek.  Everything happened that the doctor said would happen regarding the side effects, it started with dry eye that felt irritated (a little like conjunctivitus) drops helped with this.  My eldest daughter then noticed that my right eye was not closing when i blinked just staying wide open (great another thing to feel concious of) about a week ago, i went to put some make up and when doing my mascara i noticed for the first time that my eye did not close up, i thought great its worked, i then tried to put lipstick on, to find that i could not "pout" my right side of my top lip is drooping.  My speech has become slurred this past few days and the side of my nose feels really tight and tender to touch.

So sorry for the "essay" but its nice to be able to tell someone/people that understand exactly what i am going through.  

I am now concerned as to whether to continue with the botox, i know its still early days, but i am due to go back in about 8/10 weeks, for another session.  I know its still trial and error as to how much to inject and how often and i am keeping a diary to discuss with my consulant when i next see her.  For now i dont know whats worse, the eye/face spasming with the eye totally closing happening almost every day for the duration of the day on and off, or my lip now having no muscle function!!

confused i am :-( 

 

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  • Posted

    Hi Clare

    You asked whether I just had botox around the eye area.  I did.  I was told that if you have it too far down the face then this cause a lopsided mouth, together with the possibility of not being able to drink properly.  My spasms have been pretty bad over the last couple of weeks.  The botox has finally worn off.  My last session was in February, but I'm not going for it again.  It's not for me.  I just hope when I see the Neurosurgeon in September, he'll listen to my concerns and agree that surgery is an option.  If you had asked me this time last year about surgery I would have said no way, but i've decided enough is enough.  I feel so self concsious and do not want to carry on with this nuisance of a condition.

    Keep us updated.

    Regards, Tracey

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    • Posted

      Hi Tracey

      I so relate to what you've said about 'enough is enough'.  This was exactly how I felt after years of totally dismissing the idea of surgery.  Like you, I reached a point where daily life and all interactions became really challenging and I thought 'what have I got to lose?'  I was incredibly lucky in having one of the best surgeons (in Bristol) and I had no serious side effects from the surgery and was spasm free 6 weeks later.  It is a big operation and it does carry risks, but the vast majority of patients do really well and around 80% emerge spasm free.  It's well worth considering if the surgeon feels you are a suitable candidate.  But, it's really important to choose the right surgeon who has lots of successful experience of MVD for HFS.  It's worth travelling, rather than opting for a local surgeon who wants practice!!!  Take care and good luck to you. 

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    • Posted

      Hi Tracey

      Thank you for your reply.

      I totallu get where your coming from, as the days go by i am doubting very much as to whether i will continue with botox, i think i will be making some calls to discus surgery options.  Already just after the one session my top lip is droppy.  I also feel very self concious of my appearance, i dread parents evening at school and meeting new people.  I used to be so outgoing and loved meeting new peple but now the idea feels me with dread.

      good luck with the neurourgeon, keep us updated also and i will keep you posted.

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  • Posted

    Hi Everyone

    I think what's emerging from people's posts ( whatever stage of the HFS journey they're at) is the importance of being informed. When you enter the medical domain you are surrounded by a range of professionals, some of whom, for a range of reasons,  will ( largely unknowingly) intimidate and provide selective information. There are pressures on fundholding at GP practices and most doctors are not psychologists. Some ( including mine) are not even able to demonstrate a working bedside manner.  You are the one experiencing this insidious condition. In this context, it's so important to get the facts and then you have the basis for making correct decisions. This is a condition with a highly specific cause, and also a condition which responds well to surgery in a lot of cases. ( I think someone quoted the 80% figure- I don't think that's wide of the mark). Botox may help, but I think someone (aussieboy?) used the terms "sticking plaster" in relation to Botox. I think that's a good description ( one also used by my surgeon). Surgery is the thing that will get to the source of the problem and attempt to eradicate it and it has a very high chance of success.

    The operation isn't as bad as it sounds. I  remember seeing an article in a newspaper about 10 years ago, and thinking " I have that", but the problem was the title of the article was " A facial twitch was ruining my life, the only answer was to drill into my head". As you can imagine,  as soon as I read the word "drill", I did a 180 degree turn and entered ostrich mode for the next few years. Although by coincidence, the surgeon who is referred to in that article is the same one who did my operation 8 years later a week before he retired.

     If you're considering an op, ( or if you're not) find out all about it. You'll be reassured. As Roseann notes, consider who the best person for the job may be as part of your reseach.

    The bottom line is this is a condition from which there is no hiding place. Your eyes and face are in the front line. I missed out on a lot of social events due to an inability (literally) to face them. As you know,  photographs become a nightmare and just hearing the word "smile" in any context brought me out in hives ( I had no idea that so many songs used that word!) In the face of this I became very passive, introverted and afraid, and believed everything GPs told me  ( including that I had a completely different condition -Bletharospasm ?!!). It was only when it was in its final stages and HFS didnt' have anywhere to go ( it had proceeded all down my face and affected my neck) that I reached the end of my patience/ wrongheadedness and took the necessary steps -surgery. I think it's likely everyone has their own point when they feel like this, though it will depend on a lot of factors including, nature of job, age, how supportive their family are, income, etc.

     It's so heartening to see a lot of folks being proactive, finding out all they can and weighing up their courses of action with such intelligence. I wish I'd been thinking down along these lines a couple of years in- instead of letting it defeat me for over a decade. There is life after HFS. It can be vanquished. I'm very happy to talk about any aspect of my experience with anyone who is going through it. I wish you all the very best and will be rooting for you all- don't let this thing own you.

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    • Posted

      Just to say that I echo wholeheartedly everthing that Ed has written so eloquently above, and in particular the bit about how HFS affects one's everyday life and personality.  I suspect that Ed and I had very similar journeys with HFS (I had mine for 9 years before submitting to the inevitability of surgery).  It's a pity that newspapers need to sensationalise every headline and don't just settle for giving good information to people who suffer this highly debilitating condition.  I am also happy to share my story and my bank of information with anyone who needs any help. Surgery is a massive decision, and a frightening one, but it is the only known cure for HFS.  But, if surgery is not for you then I hope you will find something that makes life more manageable.  Take care and good luck to you all.  xx
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  • Posted

    Hello everyone,

    It's great to have all this support and encouragement. I'm off to have Botox again shortly and intend to raise the question with the 'associate specialist' who does the injections about 1. MRI scan and 2. possible surgery. Like Ed I was diagnosed with Bletheropasm to start with and no one ever told me that was incorrect - I found out for myself that I had hemi-facial spasm by researching it on the internet.

    Will report back later!

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  • Posted

    Hi Claire, believe me I am confused as much as you. I have had HFS since August, 2013. I have been to my neurologist and even had MRI where I was told that it was nothing serious and the only treatment I was offered was Botox.  I also went to an ENT specialist and was given Tegretol which did work at first but gave it up as with or without, the spasms where the same. My situation is a switch on, switch off one.  I start with a day where my spasms are at a stand-still and then they seem to escalate gradually, and then die down again. I have my left eye slighly more open then my right as well.  I have been contemplating surgery, but op is not performed here, and I would have to go to the UK to have it done, and this is very expensive. I am at my wits' end, and to cap it all I have never met anyone with my problem. Am scared of having Botox as am afraid I will end up looking with half my face paralised.
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    • Posted

      Hi Gladys

      Thank you for your reply.

      After my first set of Botox, I was left with a very wide open eye that does not blink and a dropping lip...with occasional slurred speech.  I was a little concerned that if I carried on with Botox I'd end up with a total frozen face, it seems now other muscles on the cheek and neck are affected. Thankfully this should return to normal (well spasms) when it wears off, although I'm scheduled in sept for another set. Botox is very much trial and error to get the doses correct and people react different to it. 

      I have since started exploring the options of surgery and I was able to speak with my neurologist to discuss my concerns, he is now referring me to another hospital to see their neurosurgeon for their opinion. Fingers crossed and waiting. (I will not be under any obligation to go ahead with surgery if they offer it to me)

      As you would need to travel to the UK, maybe try some Botox first to see if that helps, however in my opinion (and that of others on this forum) Botox is only going to prolong HFS all the time you have injections, surgery is believed to be 80% successful. 

       

      I research MVD and the side affects which led me to take my journey to the next stage, I will wait to speak to the neurosurgeon.

      I'm sorry if I've not helped much, one thing I have learnt from this forum is there are many others suffering, there is no need to feel alone, people do understand exactly how your feeling.,,just keep talking and don't rush into anything, the specialists will be able to guide you....keep on and don't be fobbed off you know how this affects you and your lifestyle better than anyone.

      Good luck and keep me posted :-)

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  • Posted

    Hi Care and many thanks, your reply has made me feel alot better. I have an appointment with another doctor on Friday, and he said he has to see me to be able to diagnose.
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  • Posted

    Hi Clare, I live in NZ and have been having trouble over the last 2yrs, firstly with the eye twitching and then over the last 6 months the nose and mouth have also been involved.  Luckily the internet helped me self diagnose and I had my appointment with the neurosurgeon yesterday who confirmed it and has booked me in for an MRI scan and some botox treatments.  I wish I'd  found this forum before I'd been to see him so I could have discussed a few more options,  the botox sounds very hit and miss.  At least now I'll be able to tell them to ere on the side of caution and go for smaller doses rather than larger, I might even just get them to start with the nose  as I don't want my eye to be any dryer and definitely don't like the idea of it closing up or staying open.  The botox seems like a very hit and miss option but I guess I'll have to give it a go , I'm hoping the MRI scan will be able to show something to give me an idea of whether the surgery could be the answer.  Thanks for your post and also I feel lucky to have been diagnosed so early on, feeling bad for some of the people who have suffered for years with no answers.

    Thanks again Marie

    http://www.mayfieldclinic.com/PE-HFS.htm#.U87EuxYduRs ;

    the above link is what I took with me to my GP and neurologist

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    • Posted

      Hi Marie

      Sorry to intrude on your discussion and also if I am repeating myself from another thread.  Please do also join the Facebook Hemifacial Spasm International Support Group where there is loads of info for you.  Also know that there are loads of us who have or have had this nasty little condition.  I had surgery after 9 years with HFS and it was the best day's work I've ever done.  But it does come with risks (none of which I succumbed to thankfully).  Take care.

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    • Posted

      Thanks Roseann and yes I joined it this afternoon, lots of good information.  Its great to hear of people having success with the operation, I'm sure that's what I'd go for if I get the chance, seems no point in just putting up with it if its going to get worse.
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    • Posted

      Hi Marie

      Thank you for your email, i'm glad that aomw of my postings were able to offer some advice.

      Firstly, well done for finally having a correct diagnosis confirmed.  The MRI should give a clearer indication if surgery is an option. 

      I have tried botox and yes it is very hit and miss.  My advice to you would be to avoid having it around the nose, I had injections in two areas alongside my nose (in the crease of my cheek) and since having this, (my first treatment) my top lip has drooped and my speech can occasionaly be slurred.  I am due to have the next lot early September, I will be avoiding this area and only having it around my eye if have any at all.  The dryness can be easiyl managed with eye drops from a chemist and it is so nice not to have my eye closing up on me, although t first for a couple of weeks it wouldn't even blink.  My consutant thinks maybe I have been extra sensitive to it and possibly look at lowering the doses.  However since then i have been referred to a Neurosurgeon to discuss the surgery options and whether it would be an option.

      I have read the link you posted and found it very informative, I also stumbled across this forum by mistake after googling side affects of botox? This forum has been a real eye opener and has helped me greatly to come to the decision to look into surgery, before then i was too scared of the possible risks involved.  I do however feel now that botox will work all the time you are prepared to keep injecting, as soon as you stop and it wears off the symptons return.  My spasms are slowly becoming increased once again and its only been about 7 weeks into my first treatment.

      Good luck with the MRI, keep us posted, take care.

       

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    • Posted

      Thanks Clare and that's great info about the botox, I was actually thinking i would only get it around the nose as I was too scared with the eye and mouth but now I'm not so sure and as you say it would be a great relief to not have my eye going beserk or closing .  Surgery definitely seems the only option that i could cope with as otherwise it sounds like years of botox that gradually might not work that well anyway ?  So hard whichever way sad
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  • Posted

    I have just had my first ever spasm, and am still in shock, 48hours on and the sigms and symptoms have gone, am waiting for mri spoke to my gp who tried to reassure me that it might never happen again, although all the research suggests otherwise. Can anyone tell me if they have ever heard of this being a one off? Also did anyone have fatigue and he shakes during attacks?

    thankyou for all the postings I am finding them to be a great source of information if noy reassuring.

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    • Posted

      Hi Christine, I'd be interested to hear what your 'spasm' felt like?  Hemifacial Spasm is usually something which builds gradually from small eye flutters/twitches and then in weeks/months or even years it progresses down the face and causes one side of the mouth to spasm upwards in an uncontrollable way.  I have not heard of anyone having the shakes with HFS, but it certainly is tiring.  Great to hear that your GP is taking it seriously and getting you fixed up with an MRI.  This should help you to know what caused your spasm.  If it is HFS then it will come back and it will eventually progress, but I don't think you are even close to this diagnosis just yet from what you've written.  Deep breaths and only worry when you have something definite to worry about.  If it is HFS then you will have loads of support from people all over the world.  And if it's not, that's great too!  Take care.
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    • Posted

      Hi Roseann, thank you for your reassuring words, the first time I do not remember any eye flickering but yesterday had brief episode, eye strong twitching then cheek spasm with a feeling of a line running down my neck, didn't last long, laid down for a while and it settled,  you are right tho I need to wait for mri and stop worrying, I am worrying so much which is making me feel ill. Once again thankyou x
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    • Posted

      Hi Christine,

      Good thinking, you're wise to try not to worry. I think worry, stress and anxiety certainly don't reduce twitching and spasming. I know it's hard because the nature of the condition is so "out there" and distressing, but any measures you can take to relax are bound to help your sense of well being and at least help you to think straight. Judging from the alacrity with which you are considering MRi to pinpoint what may be the problem, I don't think you need any encouragement to think straight BTW!

      All best

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