Hemifacial Spasm..There are others!!!

Brain and nerves
1

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.

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

Hi

I also had botox when my eye didn't close. It meant I had too much around my eye and next time haf less and it was wau better. 

You need to tell the neurologist each time what you feel.

 

it took a long time to get it right so hang in there.

I feel for you as went through ssme problems. 

Good luck for next botox.get less around your eye

3

Hi nickip

thank you for your reply.  i am hoping by keeping a diary until i see her next it will give her a good indication of whats happening and she can make necessary adjustments.  (hopefully less in this case)

4

Hi Clare

Just read your post and I was at your stage this time last year, and had my first session of botox.  I went with an open mind and didn't expect anything to work the first time.  I had three more sessions since the summer of last year and decided I didn't like the effect it was leaving and that it really wasn't doing anything for the HFS.  I too had dry, irritated eyes.  My GP has since referred me to the National Hosptial for Neurology in London and I'm having a more detailed MRI on the 23rd July, with a follow up appointment in September to speak to a neurosurgeon.  I think the time has come to think about surgery, although I haven't taken this option lightly I feel completely fed up with the whole thing and would love to wake up one morning and be spasm free.  Whereabouts in the UK are you?  You may find that after a few session the botox will work for you,  Keep you using this site, you can keep posting your thoughts.  Regards Tracey

5

Hi Tracey

Thank you for your reply.  I think for now I will stick with the botox and this fantasic site.  I am located in Hampshire, about 45 mins away from London and currently being treated at Winchester hospital.  I tried to keep an open mind regarding the botox, but three weeks into my first treatment, i am feeling slighty let down by the effects.  My dad said i can do a very good elvis inpression now :-) i cant believe how my lip/mouth has been affected, i know i was injected with slightly more in this area than in my eye (think this may need to be reduced) however although my eye, so far is not twitching or closing up, i can still feel the facial muscles puling, its quite uncomfortable. 

Did you only have the injections to your eye? (hope you dont mind me asking)

Where i had the injections by my nose/cheek its very tender to touch and i keep getting headaches almost like a pressure/tension headache, wasnt sure at first if this is normal as my eye is fine, no tenderness (where i had four injections) i was thinking it couldnt be an allergic reaction as this would be the same for the eye?  Think i may have to call my neurologist and run it past her.

Good luck with the MRI.

 

6

Hi Clare,

These mixed feelings about Botox are entirely understandable. As you point out it can be a double edged sword which leaves you a bit confused about which is worse the HFS or the Botox. Completely normal reaction! As Nickip points out, it may take a while to get the balance right. I had Botox for ten years and at the end was having very minimal amounts indeed due to a wish to avoid being completely "frozen".  

 It's great that you've had a correct diagnosis at this stage (3 years). From a mixture of despair and poor medical experiences, it took me 13 years to get that, as I put up with an incorrect diagnosis of Bletherospasm for many years. I have recently had an operation (MVD) which six months down the line is beginning to work.( no twitches for 6 weeks).  After so long grimacing involuntarily it is a bit surreal to think that it might have been sorted, so can't quite believe it yet... excuse the lack of euphoric language!

As you imply, HFS can be a very lonely and isolating condition ( in my experience, little understood by doctors) which can have significant psychological effects. People on these forums undoubtedly know what you're going through and they're a source of warm support and advice, and as Roseann reminds us, if you're someone who does facebook, it would make sense to consider the support on offer through that route also.

A final word about operations. Since you have had an MRI scan ( which in itself can be a bit of a battle to secure), I'm guessing you're not the kind of person to accept medical advice totally uncritically. You mention the surgeon saying it might be too early for an operation. He's the "expert", but the symptoms you describe do sound "severe" and I think that many people have went down that route even earlier than that. I did wonder whether my leaving it so long would end up reducing the chances of the op being successful or might make the necessary repair take longer, but I've heard different opinions regarding this. I think the factors governing success and recovery time are more complex.  Researching and finding out about this horrible complaint gives you a sense of control, that's for sure and gives you the evidence to make informed decisions.

  In some ways the key questions once you know for sure its HFS are "how long are you prepared to have botox?", "how long are you prepared to put up with HFS for?" and relatedly, "Do you have the resources to fund an operation? 

very much enjoyed reading your post. Keep your perspective and learn all you can so you direct your own outcomes. You are not in this alone.

 

7

Hi Clare

So sorry to hear how HFS and Botox is affecting you.  You describe the same symptoms that some other people have reported with Botox.  I would advise you to join the Hemifacial Spasm International Support Group on Facebook.  There are lots of people on that site with a lot of knowledge on this subject (though many of them are in the US, not UK).  There is also another HFS Support Group on Facebook which has more UK members,but possibly less information.

I would support all that Ed has written below.  Many neurologists are anti-surgery or just do now know enough about it.  I went through x 3 neurologists before finding Nik Patel at Southlands Hospital (formerly Frenchay) Bristol.  He immediately 'got it' and I cried because after almost 7 years I had found someone who really understood how this condition impacted on my life and personality and emotions.  He offered me surgery (NHS) and I hesitated for nearly two years before going through with it last year.  It was a big operation with a fair few risks attached but I came out healed and with no complications (at the age of 62).  My experience with Botox was not great and I couldn't cope with my face being asymetrical (completely frozen on one side and mobile on the other).  But, others have reported very good results over a long period of time.  It is true to say that medication does not help the majority of people.  Some people are reporting some relief by taking turmeric paste, but this is clinically unproven of course.  Do hope you will find some answers.  Please let me know if I can be of any help to you on your journey.  All best, Roseann (real name Angela Bond on Facebook)

8

Hi Clare,

It sounds to me, given your age, as if you are a prime candidate for surgery, but maybe they will recommend you keep having Botox a few more times first. I am 64 and I've had the condition for 6 years and, like yours, it started in the eye area and gradually spread down my face. Also like you, I can't 'pout' when applying lipstick and my left eye doesn't close as easily as it should. Also my left eyebrow is much higher than my right. My speech sometimes seems a bit 'thick' rather than slurred.

I am putting out feelers for having surgery although my spasms are not terribly severe (probably because of the Botox!) but the left side of my face always feels tense.

 

9

Hi, 

Thank you so much for your lovely reply. I only stumbled on this forum by accident when further researching the side effects of Botox, I'm so very pleased that I did.

After reading many posts I think I have been very lucky to have a diagnosis and treatment within 3 years.  

The very first consultant I saw had only witnessed it happening very slightly, and yes it does feel quite severe now, he really did try the scare tactic regrading surgery, with four children under 13, surgery felt like a definite no go.  However, after my first Botox and the experiences I'm having I don't know how long I should continue.  I know that they need to get the units corrects and the position in which they inject and that will take time. After reading so many successful stories about MVD I'm not so scared now and will definitely consider that option, I don't want to wait too long.

Thank you once again and good luck.

10

Hi Roseann

Thank you so much, your words are very comforting.

I will keep you upto date on my journey, it's only just started really in the way of treatment, I'll persevere with Botox for now but I do feel that surgery is a definite option in time.  I will speak to my consultant at my next appointment about the surgery options and go referrals, I've read very good things on Nik Patel.

Thank you and take care

11

Hi Sally

Thank you for your reply.

It seems there are so many of us out there all going through similar if not exactly the same thing. I am shocked.

The Botox definitely has it's downsides, at the moment it almost feels as if, now my eye can't close up because of the Botox, and my lip is currently unable to turn upwards it's finding all the other facial muscles to spasm. 

I was always very aware of my twitching, and my friends and family always played it down, it was only when I videoed myself on my phone that I actually witnessed the severity, I was gobsmacked.  I am going to start discussing the surgery options on the next visit.

Good luck with your journey and take care.

12

Hi Clare,  I just wanted to share my experience with you.  I am a 60 year old male living in Sydney, Australia. ( Born in Ayrshire Scotland.) I put up with HFS for about 6 years having decided the botox solution was not for me.  I did not want to put up with HFS for the rest of my life, so I sought advice.  I ended up in the very capable hands of Neurosurgeon Dr. Mark Dexter at Westmead hospital here in Sydney.  After he very thoroughly explained mvd surgery, side effects, and success rates my very last question to him was " If you were me would you have it done?"  He simply looked at me and said, "If I were you, I'd have already had it done!"  So...I had MVD surgery on 20th June.  Right now my situation  is I have very few and much less severe spasms.  I have a problem with my voice being very hoarse and swallowing is a bit difficult.  I am assured this will pass.  My hearing seems unaffected and up until this point I've had next to no pain at all.  I just wanted to mention two other things.  My MRI did clearly show the problem and the procedure was routine. (For them anyway.)  The second thing is that my Mother has Bells palsy. The nerve did not recover.  My half brother had MVD surgery for TN less than 2 years ago. I'm happy to answer any questions regarding my experience.

13

Hi Aussieboy.  You had your MVD exactly one year to the day after I had mine here in the UK.  So pleased you have come through well and that your problems are those which will, in time, get better.  I don't know if you are a member of the Facebook Hemifacial Spasm International Support Group?  Several people of that group are interesting in good surgeons in Australia and I know they would be pleased to hear your story and gain valuable insights into Dr Dexter.  Hope your recovery continues to go well.  I had spasms for 6 weeks post surgery and then one day I woke up and they were gone.  Others have taken up to 6 months to go, so don't give up hope of a complete recovery.  Wishing you the very best and hope you are resting loads and drinking lots. x

14

Hi

Thank you for your reply and for also sharing your experience with me.

Its nice to know that MVD does work and that the surgery seems like a success for you, fingers crossed for a full and speedy recovery.

Take care, no doubt i will be in touch with many questions.  

 

15

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

16

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. 

17

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.

18

Hi Roseann.  Thank you for responding and for your kind words.  It sounds like your mvd was a success.  That's great if that is the case.  Well done!  I will look into the support group. I did lots of reading before my little adventure and I believe being armed with accurate information is always a good thing.  I am positive that given time any remaining  problems I have will resolve themselves.  Dr. Dexter told me he expects a full recovery.   I am in awe of the work that he does.  In the same ward as me there were quite a few his patients.  Many of these people obviously had cancers removed etc.  Life saving stuff that he does everyday!

19

Hi Clare.  Thank you for your kind wishes.  I did not go down the botox road as I felt it was a bit of a band aid solution.  As I understand it as a layman, the artery bearing on the facial nerve root actually causes an "indent" over time.  In my case the Neurosurgeon said he could see the damage was towards the upper end of the scale.  Again as a layman, it seems to me without surgical intervention  there is a chance of the nerve being damaged to the point of no return.  My Mothers face never returned to normal after bells palsy.  She had  no control over one side of her face at all.  She had  her eye stitched about halfway closed and her mouth always drooped on one side. Socially harder to live with than a twitch.  (I'd imagine.)  Having said all this though I don't remember her ever having hemi facial spasms before bells palsy.

20

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.