Recently diagnosed with HFS...completely confused...

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I have recently been diagnosed with hemifacial spasms. My neurologist actually got to see them first hand recently, and until then he thought what I described to him were likely to be another form of epileptic seizures (I have simple partial seizures). The spasms started with twitches by my left eye every few weeks or so, but they have progressed over the past few months to happening every day and ranging from a small twitch by my eye to taking over the entire left side of my face from the eye to my chin – at times I can’t open my eye due to the spasms. It is really distressing. I had an MRI done which my neurologist said showed nothing. However, I was in hospital in late 2012 for a migraine and an MRI done then found that I had a torturous artery – I can’t remember the name, but it is the same artery that can press on the nerve that triggers hemifacial spasms. I’ve started having botox injections, which I hate as my face is a bit droopy (not very visibly, but I can feel it and my smile is lopsided now) and I’m waking up choking at night (but I don’t know if this is coincidence or actually caused by botox), and I’m still getting spasms (it’s almost a week since the injections).  I’ve also read that botox stops the spasms, but not long term and they will progressively get worse. So, my questions…does an MRI always pick up arteries pressing on nerves? Does anyone else find they wake up choking after having botox injections? And what do I do now – continue with botox, talk to my doctor about surgery, put a bag over my face, take up a career doing Elvis impersonations? Sorry to sound flippant, but seriously if I don’t laugh sometimes I’ll cry and/or scream. Thanks everyone...

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  • Posted

    Hi 

    I was diagnosed early this year with right sided hemifacial spasms and since then they have become progressively worse affecting the whole side of my face and like you my eye closed fully. My neurologist referred me for

    Botox which I had in June and they were awful for me, they think I must be sensitive to them as the doses given were very small. Like you I experienced droopiness in my face especially my top lip I couldn't pout or even smile. (I've got a bag on standby :-) ) although never experienced the choking that you explain.

    In my opinion Botox will only lessen the spasm not totally stop them all the time you continue with the injections. I wasn't prepared to have these done for the rest of my life as I was worried I'd end up with a totally frozen face eventually. Didn't know what would be worse.

    I went back to the consultant and asked about surgery which I was referred to a neurosurgeon in Southampton General Hospital and I had this appointment last week. I have been lucky in that the surgery is an option for me.

    My MRI does show some blood vessels but not enough to show how they are lying on the nerve. My surgeon has told me that he will only know more once I'm opened up, however if it looks like their position is awkward he will just stitch me back up.

    I think you should talk to the dr who gave you Botox to ask about the choking. Read through the discussions in hi

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    • Posted

      Sorry hit send by mistake.

      Read through the discussions on this site they are very helpful and provide lots of information and opinions..it's helpful to know you are not alone.

      Maybe ask your neurologist to explain the operation MVD and all the risks associated with the operations and then make a decision based on what's right for you. They are several on here that have had the operation and are totally spasm free now.

      Good luck with your journey and all the best.

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    • Posted

      Thanks Clare - like you I've found that the botox is not good. The left side of my face is droopy and feels heavy (my eye lid is going over my eye like it would if I was really tired). I've talked to my neurologist by phone and we'll be talking further in December. I'm lucky I have a good one!
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    • Posted

      Hello clare04574,

      I've had this horrible condition for quite a few years. The constriction of the eye and pulling of the face on the affected side is the most unbearable for quite a few years now.

      I feel that an MRI is an unnecessary call for this condition as HFS has been well documented; it is the fix that we are after. An MRI cost S$800, and reveal next to nothing except "tortuosity" of vessels!

      I have given up Botox as it weakens the muscles giving rise to a palsied face. While Botox block the nerve signals to the contracting muscles, it does nothing to relieve the pulsation inside the ear, which worsen with anxiety and angulation of the head. In my case, in which the left side is the spasmodic side, turning towards the left make things worse and turning to towards the right relieves it.

      The smile becomes lopsided in time; one side is like Cheshire cat. One brow is higher than the other.

      Acupuncture and Cupping has not helped. I find temporary relief by hanging with straight arms to a bar set on door frames and turning the head (something I mentioned in a reply to another sufferer here.

      I have also written to a South Korean clinic which recorded a cure for this but did not receive any reply. They use moxibustion, but I have not made contact with them again.

      Old as I am, 64, I have come to accept life without botox ( S$200 every 4 months ) . Fewer social activities, and lots of golf games is good enough to carry on for me. I think its better not to continue with botox for the limited symptomatic relief it provides.

      Until such time Osteopathy finds a cure, good luck to your MVD intentions.

      In UK there are so many qualified Osteopaths. I feel that someone will get a breakthrough one day.

      Hoping to read more from others in this community. Do share your good fortune here please.

       

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    • Posted

      Hello Windhurt

      Thank you for your reply. Everything you describe is exactly the same for me.

      We are very lucky here with the NHS although waiting times are increased :-) I am now on the waiting list for MVD surgery and hopefully planned for about 3 months. Feeling rather anxious now but trying to put it to the back of my mind until I know a date. Let's just hope they can sort it. I so desperately want to old me back. I have socially withdrawn avoid photos at all times and I can't even look at the person talking face to face with me. This isn't me, I used to be so outgoing. Willing to try anything now. 

      I'll be sure to keep updating the forum in my journey and good luck with yours 

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  • Posted

    Hi kate, you sound just like me, completely fed up and left to deal with it alone! Things have progressed quickly for me , my spasms started really badly in august this year when I flew to portugal, seems odd,  but i think flying might have triggered it. When I returned I went straight to a gp who diagnosed focal epilepsy incorrectly. I returned for a second opinion and got referred to neurolgy who confimed it was hfs as i feared. Luckily,  i already knew a lot about hfs from my own research but the consultant told me nothing , other than just diagnosing it , which is bad. I had an mri within 2 weeks of that appt ( that was a week ago) but I've not had the results yet to see if a compression is found. I have done a lot of research and found that a compression is only found in about 50% of mri scans , if its not found then you still have hfs its just not picked up. Without it being picked up I have been told surgery is

     not an option (not 100% sure if I have been told correctly but it seems plausible that you cant operate on something not seen) so evetually once my mri results are known I too

     will be offered botox which I will try but I it doesnt agree with everyone and the effectiveness does eventually fade. I think surgery will eventually have to happen but does it all depend on finding that compression on an mri? The

     problem is I have 2 young children to care for so resting

     after surgery would be a problem for me.  I go to the hemi

     facial international support group on facebook, you get great support from everyone in the group, join up!

    caroline

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    • Posted

      Hi Caroline - it's hard when doctors don't tell you anything. Afterall, it is our bodies! I'm not certain about surgery not being an option if compression is not found - it sounds like, from what Clare said above. To me it would make sense that they could do investigative surgery if it's not clear if there is a compression that could be fixed or not. I hope things are okay and if you're willing to share the outcome of your MRI results I would be interested to hear.
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    • Posted

      Hi kate, well yesterday I got the mri results, not good news unfortunately. I apparantly have a large avm at the base of my brain which could rupture at anytime and be catastrophic or fatal.its pressing on the facial nerve which is why I am getting the hfs twitch. Not sure things have sunk in with this news yet and waiting for news from neuro team in nottingham to decide best way forward. They dont think surgery is an option unfortunately because of where it is, even tests they need to do could cause a stroke so not in a good place right now. I am angy, im only 41 with two young children,  life is so unfair!!
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    • Posted

      So very harsh for you Caroline.  Rooting for you to beat this thing and get the best possible treatment right away.  Lots of love. A x
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    • Posted

      Caorline - I"m so sorry to hear this. I can't imagine what you are going through right now. You're in my thoughts and prayers with much love, Kate
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  • Posted

    Hi Katebet.

    You don't say how long the time period has been between you first noticing the twitch and your diagnosis, but from your post, it doesn't sound a long time, so well done for not letting the grass grow and letting this distressing malady stun you into inertia.  Apart from Elvis impersonating (a crowded market!) you sound like you are well into the process of considering your options-one of which is surgery. My own opinion would be that once you find out that you definitely have HFS, finding out as much as you can about surgery is the way to go. Once you gain the necessary knowledge about MVD, it's likely you'll start asking questions like "How do I go about having this?" and " Who are the best surgeons in the field?" As you will note from the other helpful posts on this forum and other international/ facebook ones, this is the one proven way of consigning HFS to history. Botox is a sticking plaster which can work for some. It rather depends on whether you are content with continuing temporary fixes or feel that you want to get right to the root of the problem. This can only be decided by you. The decision to have surgery, whilst never an easy one, is not something I've regretted for an instant. I wish you all the very best. Please draw comfort from the many folks with an intuitive understanding of how you're feeling who are regular visitors to this and other internet sites. Your sense of humour will also help you, but its clear thinking and evidence based decision making that are key.

    P.S re your question about botox and choking

    Prior to surgery, I had botox injections every three months for eight years ( very minimal amounts as I had the problems with lopsidedness to which you allude), but I dont recall any night choking being associated wth these treatments.

    Take care

    Ed

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    • Posted

      Hi Ed - thanks for your reply, and I have to say that is one of the most eloquently written posts I've seen in a forum! Are you are writer by any chance? I've talked to my neurologist about the choking and he thinks it is not to do with the botox - which I agree with. The sloppy face on the otherhand is and we'll be talking about that more in December as the spasms are still happening too. I'm lucky that I have one of the best neurologists in the country. Cheers, Kate
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    • Posted

      Hi Kate -ta for the compliment! ( maybe Jackie Collins and Jilly Cooper  are getting a little nervous about the competition....) yeah botox can bring a few downs along with the ups, and it really divides opinion. Some feel it enables them to have something approaching "normality" ( whatever that means), whilst others wonder if it's worth the hassle- I had about 25-30 treatments altogether and I remember one or two black eyes along the way from hamfisted injections. ( Made a change from spasms though!)  Glad that you have faith in your neuro. Keep positive

      Best

      Ed

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