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Hemifacial

Posted , 8 users are following.

sue15
sue15

hi went to see neuroligist today he says I got mild Hemifacial it started with my left eye twitching it has spread to my mouth yet but when I talk to people I feel it twitching I can talk and eat ok at the mo  will it get worse I've had symtons for 6 months now helpful replies please and what can I do to help myself I'm nervous reck 😟

2 likes, 19 replies

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  • Roseann
    Roseann sue15

    Posted

    Hi Sue.  Are you in the UK?  There are a lot of us in the UK who have or have had Hemifacial Spasm.  It is frightening when you are first given this diagnosis and it's important to ask for an MRI scan just to rule out any other possible cause of Hemifacial Spasm (HFS).  Hemifacial Spasm is a progressive condition but many people have it in a mild form for a long time before it progresses.  Everyone is different, but unfortunately it's not something that can be healed by tablets or medication.  The normal way forward is to put up with it for as long as you can without any intervention, then to try Botox injections which can be very helpful to some people.  These have the effect of paralysing the twitch, but can sometimes make the face a bit lopsided if you are unable to have Botox on both sides of your face.  If your HFS does progress to a point where you can't put up with it any longer (if it starts to affect your confidence, your ability to socialise, your ability to sleep etc) then there is a potential cure, but it's not something that you do lightly.  It involves having surgery to the nerves at the base of your brain and is classed as major surgery with a number of associated risks.  I had HFS for 9 years before I eventually opted for surgery in Bristol in 2013.  Thankfully I did not suffer any significant side effects from the surgery and was completely cured.  I would recommend that you join the Facebook Hemifacial Spasm International Support Group if you are ready to hear of other people's experiences and if you want some good factual information.  But, it can be scary to mix with a lot of seasoned HFS travellers when you are new to the diagnosis.  Please just ask if there is anything we can help you with.  We definitely understand how difficult this condition can be and how it can begin to sap your confidence.  Take care.
    • sue15
      sue15 Roseann

      Posted

      Hi Roseann thk you for your kind advise and yes I'm in the uk when I went to my doctor with this I asked her if it was hfs she said no but today I was told it was hfs by the neurogist he has ordered me a scan which I wait my appointment for.but he doesn't want to see me again as no further investagation is needed  I suffer wit anxiety as it is and I'm a worrier since seeing the neauroligist it's made me feel worse 😠
    • Roseann
      Roseann sue15

      Posted

      Great that you are going to have a scan just to rule out anything else that might be causing the spasms Sue.  Assuming that you are dealing with HFS, it is not something to be anxious about and it is something that can be cured if that's the way you choose to go in the longer term.  I think you have to just take one day at a time and accept the twitches as part of you as best you can.  No point in worrying about what might happen; concentrate on today if you can.  This condition will not kill you, it's just highly annoying and can be tiring too.  You can always ask to be referred back to the neurologist if you find that you need help with your spasms.  My advice, for what it's worth, is that medication does not work for HFS.  You are better to try the natural remedies and relaxation techniques which may help you to feel less stressed even if they don't make the spasms go away.  If you do decide that you need medical help with the spasms then Botox is probably the way to go, but only when and if you feel that you need this.  Please don't hesitate to ask any question and we'll try to answer it.  Gladys and Gwen below give very good advice.  We are all in this together and totally understand how you might be feeling.

       

    • sudders123
      sudders123 Roseann

      Posted

      Hi Roseann

      Please could. I ask how long were you In hospital after your operation with Nik Patel?

      Good to hear your op was a success you must feel relieved

      Keith

    • Roseann
      Roseann sudders123

      Posted

      Hi Keith, I'll send you a private message with my e-mail address.  I wrote a diary of my post op experience and also some questions and answers from Nik Patel if you would like a copy.  I was in hospital for 4 days but could have gone home at day 3 if the pharmacy had managed to get me the right eye ointment!  The norm in the UK seems to be between 3 and 7 days.  Pleased to see that you're going with Nik Patel; he did a fantastic job for me and I like the fact that he's risk averse and won't try to be a hero at your risk.  He's also very experienced in this surgery and seems to be the 'man of choice' in the south of England and even beyond.
    • richard22091
      richard22091 Roseann

      Posted

      Roseann- very good reply to Sue with a complete rundown of HFS progression. Also want to thank you for providing a listing of neurology centers in the US that can do MVDs. I had mine done in Pittsburg with Dr Sekula 2 months ago. Completely spasm free right from day one, no side effects. Very happy with the whole process. Pretty rough time in the recovery room post op, but hour by hour it got better, and I was discharged on day two.

      Richard. 

    • Roseann
      Roseann richard22091

      Posted

      Thanks Richard; so pleased to hear that you've had a good recovery after a bumpy recovery room experience.  It is no walk in the park but to be spasm free is worth the pain eh.   All best to you for your continued recovery and spasm free life.
    • sue15
      sue15 Roseann

      Posted

      Hi Roseann thank you for your reply today I've been out shopping trying to ignore my symptoms it's been twiching on off most of the day so I'm taking your advise to cope day by day  I even tried reducing my depression meds to see if they are responsible but finding myself not sleeping well as the specialist said they could my daughters law said with the injections you can't smile is that correct not that I feel like smiling right now but I'll hope I'll feel better soon but I am doing deep breathing and walking my dog .trouble is when I'm on my own I think to much and that makes me nervous but one day at time x
    • gladys39971
      gladys39971 sue15

      Posted

      Hi Sue that also happens to me. I can go for a long period without the twitching, but as soon as I realise that, immediately the twitching starts again. I know that my chances for operation are practically nil, so like I said before am learning to live with it, I even manage to laugh at it too when looking in the mirror and say "Ah here's the monster once again".

      By the way, Botox did not work for me but am still going for my third shot next June. Wish you well dear, and take care. 

    • Roseann
      Roseann sue15

      Posted

      Well done Sue on trying to take one day at a time and just enjoy the good hours/days/moments.  The injections of botox worked well for me when I just had them around the eye; they didn't affect the smile and made life easier for me.   But, when the mouth starts to pull up it may affect your smile if they inject the mouth/cheek/chin area.  The important thing is to see someone experienced in giving these injections to people with HFS.  Hoping that you'll feel happier with life very soon and that the walks will help.  There is definitely life with and after HFS but it does present some challenges for you and your family and friends.  Don't give up; you can do this.
    • kathy75464
      kathy75464 Roseann

      Posted

      Hi Roseanne, I was diagnosed with HFS a month ago after 9 months of an increasingly twitching right eye. when I felt the twitches in my right cheek and lips I went to my GP, he referred me to a neurologist.  I'm awaiting an MRI to rule out other causes. I now think I may be one of the few that develops bi lateral HFS as my left eye has started twitching and I can feel some mild twitching around my jaw on the left.  It has made me fearful of the future and thoughts of how fast and how extensive will it be.  My confidence has taken a big knock and I'm avoiding social situations ( even going to the hairdressers ). However your reply to Sue has also helped me. It's helped me  realise there are ways to manage it and I'm not the only one. It was just so reassuring to know there are people out there that have confronted their fears, lived with and managed the symptoms and when it was the right time have come through surgery unscathed and now are living their life to the full.  Thanks again
    • Roseann
      Roseann kathy75464

      Posted

      Hi Kathy, I'm so sorry that you also have HFS and are struggling in day to day situations; it is a condition which punches well above its weight in the way it affects your life and it's good that you've found this group which truly understands.  Many people find it's helpful to join the Facebook Hemifacial Spasm International Support Group AND/OR the Facebook Hemifacial Spasm Worldwide Support Group.  The former has the best information in its FILES section and the latter probably has a few more UK people in it.  It will be good to have the results of your MRI scan and to know for certain what you're dealing with.  If you would like to chat privately then please private message me;  it would be useful to know where you live and who you are seeing, but no need to disclose if you don't want to.  Take care and keep the faith that you can beat this thing.  Roseann
  • gladys39971
    gladys39971 sue15

    Posted

    Hi Sue15 Believe me I know what you are going through. I have been living with these symptoms since August, 13 and since the operation is not done in my country I am trying to adjust and live with HFS. I have been waiting for a reply from the NHS practically 6 months after it started, but up to now I have not heard anythinng.  Everyone says the best is to go for operation, am at the moment doing botox but this has not worked on me.

    I am sure that other HFS patients will be able to give you more advice and there is a site of facebook which is very supportive. If you live in UK there is a Surgeon Nik Patel and everyone says he is one of the best. Wish you luck and take care.

    • sue15
      sue15 gladys39971

      Posted

      hi gladys thks for replying actually i saw nik patel i thought he was very direct but ok 
    • gladys39971
      gladys39971 sue15

      Posted

      I have heard that he is a great surgeon, and if I get the chance, he is the one that I have in mind to do op.

       

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