MVD surgery 8 days ago

Hi Kazzy,

Thank you very much for the update, and really glad that you came through without too many complications. I was very fortunate indeed to experience very little pain throughout, and just two normal strength paracetamol tablets was enough to get rid of whatever little pain there was. But I did suffer dizziness from about day 10 to day 30 (?). Subsequently I found that I should have continued taking the ondansetron tablets prescribed to me. The box says it's for treatment of nausea and vomitting (neither of which I suffered) but the consultant told me that it cures dizziness as well.

You are right - I get tired very easily in the 3 weeks or so post surgery but your strength should return soon after. And I was almost back to normal after 2 months, though the numbness of the skull lasted the best part of 6 months (so be prepared and not get too alarmed!)

So pleased for you that the spasms are greatly reduced, my improvement was not that apparent till about 2-3 months later. I have also read other patients' hearing returning after a while, so be rest assured. I was prepared to lose hearing in one ear altogether in exchange for getting rid of the spasms! (If only it was that simple,lol)

Hope you recover very quickly and keep us informed. May I ask where you had the surgery?

Kind regards

Leon

Hi,

Thank you for your reassurances. I am having to take each day as it comes. Today I went to my GP to have the bandages changed. I was feeling a little gung ho as it was the first time I had been out the house. I decided to go for a cup of tea at a local garden centre. Big mistake! I have come over really dizzy and the right side of my head , neck and shoulder are in extreme discomfort. I had to come home and go back to bed. It also has made my spasms worse:-( I have learnt my lesson and will be staying put for the next few days.

From reading the comments on the forum I was really fortunate as I had my MVD by Prof C. in Bristol.

Kind regards

K

Hi Cathie,

Sorry to hear that your spasms have returned after a while when they seemed to have gone. For what it's worth, I have copied below 3 accounts of patients who have undergone a second MVD operation. These are taken from the HFS-assn website.

Became "SPASM FREE" 18 months following MVD #2. (Steve Barone)

First MVD had no effect, MR scan revealed another section that appeared to be compressing nerve so underwent further surgery on different part of nerve. After MVD #2, it took until October 2007 (mvd 06/01/07) until I became spasm free and life is wonderful!! It took a while to fade away but I'm now confident that the spasms have stopped. (Stuart Hicken)

I had my first MVD in May 2005 with a NHS surgeon at my local hospital in Hull, Yorkshire which was completely unsuccessful. In November 2007, I had my MVD #2 with Prof. Coakham. I was not spasm free immediately but over the last 22 months the spasms have gradually decreased and I only have mild ones for a few seconds once or twice a week now. After nearly 15 years of having spasms - the last two months have been a joy and hard to believe - I very occasionally get a slight muscle pulling in my face but NO SPASMS. Its been a very long haul and I still can't quite believe they have gone for good. (MVD #1 with Mr. Kevin Morris on 05/16/05). (Sue Jackson)

Hope you will report on your own 'spasm-free' status very soon. Positive thinking helps!

Kind regards

Leon

Hi Kassy,

You are really fortunate to be treated by the best in the land!

I appreciate how much discomfort you are in now (having been through it all myself!). Trying to find some distractions e.g. listening to soothing music, surfing the web for brief periods, playing with a rubic cube (exercise your wrists at the same time!) hopefully takes your mind off and help to pass the time more quickly.

Best wishes

Leon

hi everyone, hope people are coping best they can.. just something thats really annoying me now and was wondering if anyone else had the propblem...

every time i shower or bath my spasms start without fail.. at first it was when i laid down to go to sleep but this has started to reduce, i just dont understand, even my gp or surgeon cant give me answers..

Hi Chris

Thanks for asking this question - am sure we all have our own particular triggers. I find that heat (eg shower), cold, food smells, taste, sudden movement etc all bring on my spasms. My worst trigger is talking to anyone! This makes life very tough, especially when the person you are beginning to talk to has no idea that you were once 'normal'!

Hope you, and all of us, eventually find some resolution to it all. It's all rather tredious eh.

All best, Roseann

Hi Roseann,

Please check your message box. Thanks.

Regards

Leon

Thank you Leon

I TRY REVEAL HAARD TO BE POSITIVE, but it has been hard lately and the information you provided to me

Gives me hope.

Cathie Lynn

Hi again everyone

Hope you are all coping in your individual ways with this awful thing we've got in common.

Roseann - talking is also my worst trigger, which makes me avoid speaking if possible. Embarrassingly, some people also start to screw up their faces like mirror image body language.

Chris - could it be titling your head back in the shower that is causing the spasms? Did Professor Coakham do your MVD some years ago? I seem to remember reading that you had initially been free of the spasms but that they had later returned - if you are the same Chris. Hope you are seeing some improvement now.

I once read that you should never be ashamed of anything that is beyond your control. You wouldn't see someone with a physical disability feeling embarrassed of ashamed, so why should we? If anyone doesn't like it they can look away.

Cheers all

Sylvia

Sorry everyone - I mean a physical disability that is more commonly known about and recognised. I suppose our disability is more neurological.

Sylvia

Hi Sylvia

I suspect we all have this trigger when speaking to someone, particularly someone new. And I can also report that others frequently can't help mirroring the facial twitch and shutting one eye. My grandchildren almost have HFS themselves because they always twitch with me, bless 'em.

I don't know about you, but I'm not really ashamed of having HFS - more just fed up with it and find it easier not to socialise or be with people. It's hard for my husband too because he is now also restricted socially because of my wish to 'hide under the covers'.

Wonder if anyone saw that programme last night about young girls in New York State who all suddenly developed Terret's Syndrome and all went to the same High School. Fascinating stuff but lots in common with our own condition, but much worse. Don't know how I would have coped with HFS when in my teens - suspect it would have felt like the end of any normal life (a bit like now but heaps worse).

Take care everyone and keep smiling, Roseann

Hi Roseann

I'm in exactly the same position as you regarding my husband wanting to socialise and me not wanting to go out. I didn't see the programme you mentioned but have seen similar ones about that condition in the past. It sounds like hysteria syndrome if so many girls developed it at the more or less the same time - possibly wanting to be like their friends? In that case, they will be able to drop it whenever they want, not like us unfortunately. When I was reading about HFS there was a mention of it possibly being more of a habit than caused by something physical - I can't remember what the exact term was. (If I remember rightly it was referred to as a "mental" thing, in other words you are a nutter if you've got it.) I think subconsciously that is what we all fear - that anyone seeing us twitch thinks we are mentally ill. I certainly feel that way, but try not to think about it.

Best wishes to you all.

Sylvia

Hi again Sylvia

I agree with you that many people see HFS sufferers as just nervous twitchers and that it's mainly in the mind. If only that were the case eh?! All I can say is that you really have to have this condition to understand its devastating effects on you. Thank goodness we all understand one another and have one another to share with. This has meant a lot to me.

My consultant summed up HFS best of all when he said that it's 'emotionally blunting'. It really does take away one's former self and the personality that we had come to take for granted.

Anyway, must not dwell too much on the negatives............... Off out for a meal now, one of my least favourite things! Sitting opposite someone, having to eat and twitch in public is not high on my list of a good night out any more. Take care and let's try to keep smiling - it could be heaps worse I guess. All best, Roseann

Hi Sylvia, Roseann and all,

I find that it helps me if I explain my condition very briefly to someone new with whom I am engaged in conversation. Usually their curiosity and follow-up questions tend to ease my anxieties. Then we can carry on with a more normal conversation without me feeling all self-conscious. In fact all too often, it turns into a more interesting conversation when you talk about the cosmetic effect of botox (laughs), or how you had the rare experience of your skull been opened up!

It is very emotionally blunting (a very apt description by your surgeon, Roseann) for any HFS sufferers, but more so if you are in your 20s or 30s as that is the age when you lead an active social life. Before you say it, yes there are many young-at-hearts like us! When I looked through the member list/profile page of the hfs-assn, I was amazed to find so many experienced the onset in their 30s. Incidentally, that website seems to be dormant since 2010. But if we do get updates, I am pretty sure that most of the 'youngsters' would go for mvd surgery. They stand to lose too much of a quality social life. It is a pity that we do not have a more active forum as mentioned by some of our predecessors in the earlier hfs threads. Hopefully that is because there are very few sufferers in this country. The professor at my botox clinic once mentioned to me that the condition affects people of oriental origin disproportionately - no wonder I find so many discussion papers by Korean, Japanese and Chinese neurosurgeons on the internet! Sorry I digressed.

I am pretty sure that recent contributors to this forum who had undergone mvd surgery would agree that the desire for a better life makes the decision an easy one in the end.

Best wishes

Leon

Hi to all you lovely people,

You have made such an impact on my life and how I was coping with my HFS. Like Leon I had been reading every story on the HFS Assn website. Though as it is now no longer updated it seems very two dimensional. This forum, especially this thread started by Leon is like a lovely continual comforting conversation. I must have read every post at least three times.

Listening to how you all cope day to day makes you feel less alone. My HFS came on at 35 so like Leon said, it has deeply affected my confidence and definitely affected my career. I have been much happier in my safe job in front of a computer rather than going out and working with people which is what I would rather. At the worst my HFS was 50% of the time, which made me a master of disguise. Hats, glasses, scarves, hand movements that covered my face. I loved the winter when it was easier to cover up.

It was not an easy decision to have the MVD but every consultant agreed that botox and drugs were only a sticky plaster and the MVD was the only cure. I have three children so the thought of taking a risk with my life to possibly cure a non life threatening condition weighed heavily as a responsibility. However after meeting Prof C in Bristol he made it sound so easy. He is a wonderful man who cares so much for his patients. There was no pressure to have the operation but he gave me the confidence to go ahead.

I'm glad to say 18 days post op I am 100% spasm free and I have not lost my hearing. It was two weeks of discomfort but as long as you keep your medications up and don't over do it, it's ok. Don't under estimate how tired you will be. I lost the feeling in the side of my head and my ear but that is now nearly all back. The scar looks amazing. It looks like a small scratch.

If anyone is considering the op I will be happy to answer any questions you have.

Well good luck and lots of thanks to you all,

K x