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Hemifacial Spasm..There are others!!!

Posted , 13 users are following.

clare04574
clare04574

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 :-( 

 

2 likes, 51 replies

51 Replies

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  • erin74020
    erin74020 clare04574

    Posted

    Hi, I am from Australia ans my HFS started when I was 23 years old. I moved to the UK and it was there that I found out what my worsening spasms were. I was offered Botox but couldn't do it after seeing the Ab Fab episode. smile

    The surgery also seemed incredibly scary so I put my head In the sand for many years but after seeing the photos from my 30th birthday, I was in tears and immediately booked an appt. There used to be a good website (I couldn't find it) for HFS with people who had had MVD surgery, performed by whom and whether it worked or not.

    This website also mentioned that the MVD surgery was more successful if you hadn't had years if Botox (but not a rule). I saw one surgeon and his attitude was worrying, so I decided to travel to Bristol to see Prof. Hugh Coakham. He had many successful surgeries and performed my surgery in Bristol in January and I was gutted that if didn't work, then after almost 10 months in October 2005, my hemi facial spasm went away!!! smile  I don't know whether this has anything to do with it, but six weeks earlier I started taking vitamins and minerals including magnesium - I have always wondered if this assisted the final healing of the nerve / cells/ tissues???

    The surgery is a risk, but it had affected my life so much and I realised that I was staying at home more and actually saying no to friends invitations to their parties. I had supermarket checkout boys give me a second look because they thought I was winking at them and I no longer wanted to speak publicly at work and was embarrassed at the involuntary slurping noises my mouth made at work lunches. 

    Best of luck everyone!

    • clare04574
      clare04574 erin74020

      Posted

      Hi Erin

      Thank you for sharing your story. 

      I have my appointment with the surgeon at the end of this month and at the moment have put a hold on any further Botox, as after my first set I didn't like the side effects and the way it affected my eye and lip.

      Thankfully it started wearing off after about 8 weeks..downside means the spasms are occurring again.

      Can I ask what made you feel concerned with your first surgeon, and once offered the MVD was it quite easy to change surgeons/hospitals? Did you have the MVD on the NHS?

      Sorry to ask these questions, trying to be armed with lots of information and prepare any questions that I need to put to the surgeon....I'm kind of just expecting to go in, discuss my spams and the history with it, hopefully they would have received my MRI results along with the referral..would be good to have an idea of what things I need to look out for and ask. 

      Many thanks

      Clare

    • erin74020
      erin74020 clare04574

      Posted

      Hi Clare,

      No problems at all, ask as many questions as you need.  I remember it being such a huge decision and I just hope that everything would be fine.  I know that the website I saw really helped my anxiety to know that their were HEAPS of other people who had been fine, mostly successful and very rarely side effects.

      The first surgeon I saw was extermely arrogant, he had recently been on TV performing live brain surgery, so he was probably very good at what he did (or just liked fame??), but he was really insensitive about my concern of the side effects (i.e. so what if you're deaf, at least I will have fixed your HFS).  I guess I just went with my gut feeling on that one.

      I was very lucky and the company I worked for at the time provided private health cover (BUPA), so I didn't have to pay for anything and could get in fairly soon (just had to hold off for a few months until my  work was least busy).  I had previously been through the NHS though and I really hope that if you weren't comfortable with a surgeon that you could be referred elsewhere. 

      I'd probably call the GP's medical rooms to check that they are sending the MRI results to the surgeons rooms or whether you need to pick them up to take with you (I had to do that), and/or call the surgeons rooms to confirm they have recieved it prior to your appointment.  Doesn't matter if the staff think you're harrassing them, it could take so long to get an another appointment. smile

      I wish you the very best.

      Erin

       

    • Roseann
      Roseann clare04574

      Posted

      Hi Clare, I think you've already had them, but, in case anyone else is interested, I prepared a list of questions (along with my surgeon's answers) and I have left them on the FILES section of the Facebook Hemifacial Spasm International Support Group site.  The most important question for any surgeon is 'How often do you do MVD for HFS?' and 'Over what period have you been doing these surgeries?'  The most obvious question is 'What is your %rate of complete success?' and 'What percentage of your patients lose hearing on one side?' and you might throw in 'Do you use EMG testing throughout the surgery?'.  My feeling is that EMG testing is really important to success and to not losing hearing, but I may be wrong!  You should be looking for a surgeon who does these surgeries very regularly (at least weekly?) and over a long period of time (to rule out those who are practising!).  An 80% complete success rate seems to be near to the gold standard, but some exceed this I think.  Don't be afraid to ask lots of questions, even the tough ones that you yourself find uncomfortable to ask.  Knowledge is power my friends................  but it's still a scary business of course, but worth it, in my opinion.
    • clare04574
      clare04574 erin74020

      Posted

      Hi Erin

      Thank you so much for your reply.

      I will call them tomorrow to see if they have received all the information...I have already seen one neurologist who referred me to another hospital for my Botox..it was him that I went back to to discuss MVD. He was happy to refer me to yet another hospital. Southampton General in Hampshire. 

      Here's to keeping everything crossed for my appointment and I guess I will just have to ask as many questions as I need answered and go with my gut instinct. Thanks for the great advice.  (I love this forum, without it I would have just probably ignored my worsening condition, instead of getting in touch and asking for more help)

      My biggest worry about surgery is the possible complications...I have four children of which my youngest is only 2. However, if I carry on having spasms like I do I'll end up an even bigger recluse than what I've become.

      Many thanks

      Clare

    • clare04574
      clare04574 Roseann

      Posted

      Hi Roseann

      Thank you so much for this. I'm not on Facebook so unfortunately have not come across that page (think I may have to take a look) 

      Thanks for the help with the questions, I will definitely be asking them.

      I'll keep you posted.

      Many thanks

      Clare

    • Roseann
      Roseann clare04574

      Posted

      Hi again Clare.  Just wondering where you live if Southampton is your nearest big hospital.  I live just south of Basingstoke in a village called Overton and there are others on the forums from this area.  If you want a copy of my questions and answers then just send me a private message with your e-mail address and I'll send them to you.  It's totally natural to have worries about surgery, particularly when you have young children.  Some people do have complications, but most people say that they prefer the complications to the spasms!  The most important thing is to get yourself the best surgeon possible so that complications are less likely, even if that means travelling a distance.  I travelled to Bristol and was very glad I did.  You can choose your surgeon!   And hang on to the positive that 80% get a total cure, with another 10% being much improved.  Take care, Roseann
    • clare04574
      clare04574 Roseann

      Posted

      Hi Roseann

      Thank you so much for your reply. When I figure out how to send a private message I will send my email address as those questions will be very helpful, thank you.😊

      I live in Basingstoke, so not very far from you at all.

      Can I ask when you chose to go to Bristol, did you have to pay for treatment or did you receive it on the NHS?  You said I can choose my surgeon, if offered the surgery, do you know if I would need to go through the whole referral process again, thankfully I have not been discharged from Dr Williams at Basingstoke Neurology team, I have been lucky enough to be able to go back to him each time, for my referral for Botox and then to ask about MVD (he seems very understanding)

      I have already started researching the consultant neurology surgeon that I'm due to see on the 29th. I already have lots of questions. I may have to put up a discussion asking of people have come across him? 😀.

      Kind regards x

    • Roseann
      Roseann clare04574

      Posted

      I again Clare.  If you look near to the top right hand corner of this thread you will see a label which reads MESSAGES.  Just ping me a message with your e-mail address and I will send you the questions tomorrow.

      To answer your question...........   I saw two neurologists from Southampton on my HFS journey but neither one took me seriously, mainly because my spasms always used to stop when I saw a doctor!  In the end I got desperate and asked my GP to refer me privately to Professor Coakham in Bristol.  He was at that time the country's expert in HFS.  At last I had someone who gave me an MRI scan and showed me exactly why I was getting the spasms.  I paid about £750 for this MRI and consultation but it was worth its weight in gold.  Prof Coakham offered me surgery but I explained that I coudln't possibly afford it privately.  He wrote to my GP and asked her to refer me to Nik Patel (who trained under Prof Coakham) on the NHS in Bristol.  I felt that I had got the best man for the job with Nik Patel and all his stats were reassuring.  No surgeon can guarantee you success, but I felt that I had someone who was very experienced, well trained and with a good success rate.  He is also empathetic and really 'gets it'.  I, of course, fell in love with him when he cured me!

      If you ever want to talk it all over then I'd be more than happy to talk on the phone or meet up.  There is also another lady called Nancy in Basingstoke who has had HFS for a few years and is considering surgery, either in Southampton or Bristol.  Someone from near Eastleigh has recently had surgery in Southampton and I think she's doing well, but she didn't have Mr Sparrow - it was a less English sounding name but I can't remember it.  Some people are very reluctant to name their surgeons on an open forum, but I think it's very sensible to do so, as long as there is nothing untrue being said.

      Look forward to hearing from you and hope you can also join the Facebook HFS International Support Group - so much useful info there.

      Night night, Roseann (real name Angela)

    • clare04574
      clare04574 Roseann

      Posted

      Thank you so much. I will look at the Facebook group, it would be nice to hear Nancy's story. Thank you for the offer to talk I will private message you and maybe we could exchange details.

      I guess I will see what happens in Southampton and if I'm not totally happy I will go back to the Basingstoke team (I'm dut to see them one week after my consultation with Southampton) and I can ask for a referral to Bristol...I have read very positive things about Nik Patel. Very reassuring. 

      Speak soon x

    • Roseann
      Roseann clare04574

      Posted

      Thanks Clare.  I've messaged you on this site with my e-mail address.  No pressure at all to get in touch but happy to help in any way I can.
    • Sue1939
      Sue1939 clare04574

      Posted

      Hi Clare- are you on the facebook support group?

       

    • clare04574
      clare04574 Sue1939

      Posted

      Hi Sue1939

      No sorry I dint have a Facebook account...I am beginning to think maybe I should create one just for the HFS support group.

  • erin74020
    erin74020 clare04574

    Posted

    That's really good to hear that Roseann.  Often the medical professionals know how to help you naviagte the system and find great solutions.  These wesbite that was around for years and which I can't find now (perhaps it was ther internatioanl site pre-facebook?), had a table in which people put in their MVD surgery information, surgeons name, location of surgery, whether it was successul, after what time frame the spasms stopped, if the were any side effects etc.. I thought it was a great way to assist with shortlisting surgeons and I think if it's used sensibly and honestly and that everyone is aware that there are no guarantees then it was a great tool to add to your kit.

    And answers to questions and your level of comfort when you meet with a surgeon are paramount too. smile

    Best wishes all.

    Erin

    • Roseann
      Roseann erin74020

      Posted

      Hi Erin, I think the site you are thinking about is the HFS Association, which, though still available online is not current (because the administrator I believe had to give up on the job).  The info that was on that site has largely been transferred to the Facebook International Support Group site and there is a list of members (who are willing to be included) with their surgeons, country, outcome etc) under the FILES section.  No one, who has had one surgery, can speak definitively about the overall superiority of one surgeon over another, but it does help to read of people's experiences and outcomes from particular surgeons.  I think it always has to be born in mind that most people who have a good outcome just quit these sites and get on with their lives, so it's possible to get a skewed impression from those who continue to have ongoing difficulties or need second surgeries.

      Anyway, I am sounding as if I know it all, which I certainly don't!  Just wanting to help others to navigate the system and avoid some of the pitfalls which I encountered along the way.  Take care and all best to you.  Roseann

    • erin74020
      erin74020 Roseann

      Posted

      Couldn't agree more Roseann. smile 

      Cheers, Erin 

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