HFS and MVD

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Hi there, I have suffered from HFS for about 9 years. In Nov 2007 I underwent MVD and the spasms did slow right down, even to the point that I could go a whole week without one, although not disappear altogether. However, they have come back with a vengeance over the last 2 months. It is as if the surgery never happened. At the time, I was told by my surgeon that he would not perform a second MVD so it looks as if I am stuck for life with this. I too tend to use it as an icebreaker when meeting people for the first time and they usually sympathise as everyone at some time has had a tic in their eye which they find annoying. They wonder how I can put up with it but, as you know, we have no choice. I also suffer from bad headaches, usually when I have a particularly bad spasm, and I find that when I lie down and close my eyes at night that they can get worse. Anybody else had this?

I notice that nobody has used this website for a while but I hope maybe someone will read this and know they are not alone. I think the problem is that we have a rare condition that not even doctors know anything about let alone the general public which makes it harder to discuss.

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  • Posted

    Hi Phil,

    Hope all goes well with your MVD in May. Hopefully they can sort it for you and you can enjoy being just the one person again.

    I'm lost patience again and been to see my GP. To have spasms worse than before surgery can't be right.

    I'm now on pregabalin(lyrica) 150mg per day and am trying to book an MRI on the NHS to hopefully provide some answers.

    The only thing I can think of is something has formed like a cyst that is now compressing the nerve again.

    I read another article on a different forum how someone else contacted my surgeon after the article in the Mail on Sunday I did. They are now spasm free how I was and I'm delighted for them.

    I was back to my oldself for 2.5 months and I felt great now back to square one. Still I know things could be much much worse! Just trying to think whether I'd actually go through it all again.

    Did they indictae in any way why your compression is more complicated?

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  • Posted

    Thanks Chris,

    I've looked through the MRI with my surgeon and have to admit am none the wiser.It looks to be the way the artery is situated around the brain stem. To me I think this operation may end up being exploratory and I'll wake up without anything being done.But if you have the opportunity to sort out the problem once and for all then you take it. If it doesn't work then its back to the injections for me.At least they stop my eye closing.

    Really sorry to hear about your experience, it's weird that they are worse than before.Did your surgeon take you through the MRI before the op?

    I'm having this done through the NHS and have been told that its May 14th,but I wont believe that until I see something in writing.I had my last set of injections in September and its bad at the mo.

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  • Posted

    Hello Phil,

    Sorry I didn't realise the thread had carried on to the next page!!

    If you got the go ahead it means your 10 days post op so wondered how you were doing?

    Hopefully your spasm free and have no complications.

    I had my second MRI yesterday and await the results.

    My consultant walked me through the first MRI and it was pretty obvious to him where the issue was so I'm hoping the new MRI makes it even clearer.

    Where did you get\\ where are you having your MVD?

    Cheers,

    Chris

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  • Posted

    Hi Chris,

    Had the operation on the 14th May at Salford Royal Hospital(Hope). The operation was successful,a large artery was removed from the nerve and the padding was put on to prevent reoccurance. The recovery period has been tough.

    There was a initial reduction in the spasm but the spasm got more frequent over the 10 days.It then stabilised for the next couple of weeks before getting worse again.I then had a couple of weeks where the spasms seemed to improve.However about a couple of weeks ago I started to get some spasms which weren't present pre-op,with chin,above the left lip and even under the chin were pulling when the spasm occured.

    I have had post op consult and the doctor explained that the artery was pulsing blood that pulsing effect was causing the damage.The insulation had been damaged and when they lifted the artery off the nerve was grooved or indented. The doctor reckons that the some of the nerve that had been grooved is now starting to send signals through to these muscles which explains the increased activity.

    The reason that I'm still getting the spasms is that the nerve is now exposed and the insulation needs to repair/regenerate. So I'm 2 months down the line and there is still chance of recovery but the doctors can only measure recovery by what you tell them you are feeling. So my next appointment is in October.

    Hope this doesn't put you off Chris,my spasms are different than they were before the operation which shows that something is happening. Also I had had this condition for 5 years before surgery so there's been a lot of damage to repair. I would still have the op knowing what I know now.This is a chance to get rid of the problem permanently so go for it.

    Let me know how you get on and Ill let you know of any improvement.

    Phil

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  • Posted

    Hi,I have suffered with hemifacial spasm for almost 6 years.one hospital told me it was because I had no back teeth,So I paid out for false teeth. But at last I got referred to Atkinson Morley Hospital in Tooting. London.

    I had a microvascular decompression op 3 weeks ago.

    I woke up completely free of any twitching.Its Heaven.althoughI have almost lost all my hearing in the left ear.I may get it back or I may not.

    I have another ear.Its got to be better than the twitching I suffered from.

    I was planning to go back to work after 2 weeks,But won't be returning for another week.As my job is minibus driver.So I plan to be sure before I go back,that i am fit and well.

    I tried Botox twice before the op.what a waste of time,and I couldnt think of living the rest of my life being injected every 2 months.

    So I don't regret having the op.so good luck to all.

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  • Posted

    Hi Phil,

    Thank you very much for sharing your post-surgery experience in such details. I have undergone the same op just over 6 weeks ago and my recovery seems to be following the same path as yours i.e. spasms still there, more pronounced when I am eating or brushing my teeth. I am seeing my surgeon at the end of the month and wonder if he would give the same description of the nerve healing process as yours.

    May I ask how are you now some 18 months down the line? Do you still have those spasms?

    Best wishes,

    Leon

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  • Posted

    I have HFS and I'm planning to go for MVD surgery later this year. I amanxious to ensure that my surgeon has a successful track record with this operation. I have noted that no one seems to name their surgeon unlike the HFSA site does.

    Has anyone had their MVD undertaken by Mr Peter Bullock at Kings College Hospital?

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  • Posted

    Hi DFT304,

    Just noticed your post of 23 March 2012.

    I was also trying to ascertain my surgeon's track record with mvd surgeries after the 1st consultation. I was given a rather vague reply and felt that had I persisted with questioning, I may sound rude. So I tried to get this information from 3rd party to no avail. Then at my pre-surgery assessment, the doctor told me that I can contact the surgeon's secretary to ask for the success rate based on past patients' records. I did not bother to do so by then as it was just a week before the scheduled surgery. If you are really curious, perhaps it is worth giving it a try by asking his medical secretary.

    All the best and hope you have a successful surgery.

    Leon

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  • Posted

    Hi Jackie.. I'm from Sheffield also and also have a failed mvd just wondering who your surgeon was (Mr Patel by any chance) and what's your status as of today
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  • Posted

    Hi Jackie,

    I had MVD surgery in the US 2 years ago and got spasm free for about 6 months and then the twitching and spasms started coming back. I also lost 50% of my hearing in my right ear. It has been very frustrating and depressing.  I'm not sure I would do the surgery again even if my surgeon would do it because there is no guarantee that the material they put between the blood vessel and the nerve won't move. These doctors really don't know exactly what happens after surgery and mine is eager to try again at my expense.... Not going to happen unless I get so bad that I don't care what happens.  My head has never felt the same since surgery .

    i do find that yoga helps a little and hanging your head down for me does

    relieve some of the pressure on the base of my skull that I feel from time to time. The best way for me to get spasms to stop is lay flat on my back.

    My doctor believes the material has moved and my spasms are positional

    due to the material tapping other nerves.  I am so sick of explaining my twitching and face pulling to people when they ask what's wrong......I rather just be alone at times.

    Guess I'm not alone with this and feel bad for you also!  I keep hoping that some day this will just go away since know one knows why this starts in the first place. Good luck to you

    Diane

     

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  • Posted

    Hi, I have had HFS for the last 8 years or so and am due for MVD next week (11/25). I'm 37 years old and wondered how long it would take for me to recover. When will I be discharged? I am traveling back to my home country on 12/14 and was worried that I will not be strong enough for the trip (heavy luggage, lots of walking, etc.). The last month or so, I have been brisk walking 5-8 miles 4-5 days out of the week, doing 100-150 push ups, 100-150 crunches, 20 minutes of stretching/yoga, and 20 minutes of meditation daily. All in hopes that it would make my recovery time shorted. Honestly, I am not scared of the surgery. I'm scared of post-surgery. Would the people here that have had MVD be kind enough to share with me the physical aspects of your post-surgery recovery? Thanks in advance!
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  • Posted

    It is so hard and frustrating! I take vitamins and try to stay hydrated. I find yoga helps , but the spasms present. It is so hard to sleep . Botox helps a little .... I have to wonder if it is worth the frozen face. I wish you luck and sympathize with you!!
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  • Posted

    hi Jackie......I also had mvd surgery 14 weeks before and twiching is increasing g day by day ...really scared . ...can we so surgery again ....
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  • Posted

    hi Jackie......I also had mvd surgery 14 weeks before and twiching is increasing g day by day ...really scared . ...can we so surgery again ....
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