HFS and MVD

Brain and nerves
1

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.

2

I have recently found this site and have to say I feel much calmer about the whole HFS issue now.

I don't know anyone else who has the condition although I know a lot of people who sympathise as they've had a twitching eyelid when they are tired - it's just not the same. I am lucky - have never been laughed at or mimicked for my twitch - I run a Girl Guide group and they find it 'intruiging'.

I realise now that my spasms are not nearly as bad as they could be, they have come and gone over the last 4-5 years as my weight and/or stress levels vary.

I have had an MRI and the Consultant ran through the treatments available but I decided to see how things went.

Knowing that I wasn't imagining it was a good start.

I too have found that lying down to sleep makes the spasm worse - to the point that I get up again and do something which takes my mind off it until it calms down and I can try again.

3

I probably should say I turned 30 last year so was diagnosed 'very young' according to the Consultant. It seems to me that the general idea that the condition surfaces later in life is not ringin true any more.

4

Hi there....so glad I found this website as the other main hfs site seems a bit hit and miss and not many are from the uk.

I've had this for about 18 months now. Been diagnosed with MRI etc down in Bristol. I'm considering MVD but would have to pay private as I only got into Bupa after diagnosis. Who did you see for your diagnosis's?

Mine are worse when tired or stressed and sometime it gets me pretty down. I can sort of disguise it so people think I'm squinting or have a sore eye but it really takes it out of the facial muscles after a full day in the office.

Its a rare condition as you say and its so tough trying to tell people what its like. I just say imagine that annoying twitch in your eye that you once had and then times it by 100. I've found staying calm and breathing deep can help but I'm scared to have an MVD....

5

Hello

Its a shame this forum isn't livelier. It seems hfs is rare enough to not get much going despite the web being able to bring us together? The hfs association site in the US seems pretty moribund too.

Like someone above, my hfs came on 'young' at about 30 years old - its good to hear of others in the same position as the general description of it being a middle aged condition doesn't help (though with passing time I'll soon fit the description..)

It is a strange one - hardly anyone ever seems to mention it, mostly only small children. I'm managing to build a career that partly depends on projecting at least some authority and confidence, so I don't suppose it affects me socially as much as I imagine.

I've had botox and it did relieve the twitch - in one period of a couple of months I barely twitched at all. But then progressively my face got weaker to the point that I couldn't smile at all on one side. My wife said she preferred a twitchy smile than none so I stopped the botox.

But the spasms seem to be getting more frequent and more violent, so I'm looking at treatment options again. Has anyone successfully made it through to MVD surgery through the NHS? Is there a right approach to take to get there? I can't imagine scraping the money for it together any time soon (rough idea how much it would cost, anyone who's done it?) and its not the sort of thing you want to do on the cheap...

6

Hi there, In reply to the last poster. I've now gone through the MVD with Prof. *****, Bristol. Its 10,000 privately or if you want it doing on the NHS I'd get in touch with Prof ******via his website and ask him for a good NHS surgeon in Bristol.

Post surgery I was twitch free altogether but now get the odd flicker in the eyelid when eating or brushing my teeth.

Its a shame there isn't a British version of the hfs website.

My condition is much much improved and I'm just waiting to see if it disappears altogether which I'm hoping it will.

You may struggle with balance and potentially swallowing food for the first week or so but after that you should make a good recovery.

There was an article in the Mail on Sunday about me the other week too at the request of the surgeon. More people should know that MVD is a viable option, but something thats needs careful thought and consideration.

Good luck.

CW

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7

Hi,

I am 25 from London and have suffered with HFS since I was 21. Doctors are always shocked how young I am. I was diagnosed in Southampton as I was at uni there at the time by a lovely professor. He was very keen to promote MVD but as it was so new to me I was very scared. He then a few months later retired so was referred back to London (UCL) where I was saw countless registrars and was never able to see the Prof. I had an MRI and was advised to start botox injections and advised against surgery. I have now been having botox for the last 2 years and in the past 6 months it has had poor results. My spasms are on the right side and effect my eye and mouth sometimes to a poiint of locking in one position for some time. It really has got worse in the last couple of months and I have been researching constantly on the internet. I read your article CW in the mail and it made me determined that I would undergo MVD. I spoke to Coakham's secretary who told me to get a referral from my doctor (sounded easy enough), who I saw today however she practically laughed me out the surgery stating that I would never be able to get MVD on the NHS. I am going to phone Coakham's pa tomorrow to arrange a private appointment.

CW, how is your HFS now? Has it completely vanished? Is there anyone who had MVD a few years ago and has been completely cured? I know it is 10,000 so a lot of money to part with if you are not guaranteed cure!

Thanks.

8

hi...my experiance is in detail in one of the other posted forums....as for being told you wont get surgery on the nhs thats not true whatsoever....i talked to a surgeon and he was happy to do the surgery which im still waiting on, i tried the medications and refused the botox because ive seen to many comments about it not helping and that wasnt a problem...i live in sheffield and if you need any help on finding a surgeon in this area i would be happy to help

9

Hi Han and others.

Sad to say my spasms returned full force 2.5 weeks ago! I'd spoken to the Prof about 5 weeks ago informing him that things seemed to be getting worse. He's told me to let him know of any changes which I plan on doing shortly.

The advice given by the Prof prior to MVD was is it can take up to 3 years to go completley, after that there's not much they can do.

I'm living in hope I fit into the category that it will correct itself over time, but after having 8 fantastic spasm free weeks I feel I'm back to square 1 which is pretty depressing. Its not the money more the not knowing again.

Its as if the artery has come loose and is pressing on the nerve again

I returned to playing football in to hope it would take my mind off the spasms and release some stress only to break my collar bone...(so I'm of work again but this time twitchy! Again!) Talk about unlucky.

My doctor laughed at me too so I said refer me and I will pay for the consulatation privately, they can't argue with you then. Roughly £200. Then if you need it you can get an MRI done in Bristol for £450 ish to prove it out right.

I'd pay the £200 and see the Prof. Ask him for the name of his NHS specialist and he will help you out trust me. If you need any advice just post your email address up and I'll be happy to help. He is a good guy and will help out.

10

i dont understand why people are mentioning about having to pay when i was kindly pointed in the right direction by my doctor...i had medication, botox, 3 mri scans and am just now waiting on a surgery date all free on the nhs...this is risky but straight forward surgery that any good surgeon can do

11

You must have a pretty decent Doctor is all I can say. There's not many GP's that have heard of it from my experience, I saw 4 without diagnosis! I agree with you that the surgery is straight forward for a well trained surgeon. If they monitor your hearing nerve and measure lateral spread response during surgery you are well in with a good chance of cure. Even without them you are but there a risk of not findng the correct artery\vein to decompress and also there's a risk to hearing without BAEP monitoring. I'm pretty sure the NHS use this all over the country anyway.

I wish you all the best. And hope you get rid of those spasms.

12

Hi CW,

Thanks for reply, my appt with Prof Coakham is this Thursday. Just wondering if you have had any improvement since your last post? I spoke to the prof who does my botox and he reccomended Prof Kitchen of which I can get it on the NHS in Queens Square, London (where I have botox) so will discuss this with Coakham on Thursday.

13

Hi Han,

Sorry about the delay. How did the appointment with the Prof go?

I've improved somewhat since my last post. I have put my outbreak down to the stress of breaking my collarbone, which includes major lack of sleep. I also got pretty worked up about my return to full spasm.

I've since managed more sleep and I'm in a lot less pain with the shoulder.

I can still trigger the spasms by the usual methods (brushing teeth, eating, sometimes talking) however they are not as obvious and are more disguisable. Compared to crazy spasms all the time three weeks ago.

I spoke to the Prof the 8th March and he said he'd done all he could and my late return of spasms was unusual in the fact they have returned so late.

There is however still hope and its just a case of waiting another 18 months or so to see if they stop altogether. I could always approach another surgeon or contact the Prof again if necessary.

I hope all went well and you have managed to find someone you feel confident with. I might one of the unlucky 7% who it doesnt work for.

Let me know you got on. Also do your spasms decrease just after you eat a meal! Mine weirdly do after every meal.

14

Hi,

I'm due to go in hospital on 14th May to hopefully have MVD to sort out my HFS.I'm 42 and have had HFS since 2004.It started with the tic in the left eye.After seeing an optician a couple of times he said it was likely to be something neurological and told me to see my GP.

Before I did this I did some checking on the web and HFS fitted all the symptons.I was referred to a neurologist and he sent me for MRI scan,which came back clear. I was then put on anti convulsant drugs which made me nauseous.Had EEG and then eventually was put on botox injections.

In the meantime the condition had deteriorated to include the whole of the left side of the face and the left eye was constantly trying to close.

Have been having 5 injections every 3 months.The effect has been hit and miss. It stops the eye closing but you can still feel the sensations.Also instead of the muscles of the left side of the mouth being pulled up by the spasms,they just don't work at all so the effect is the same.

You feel like two different people,when the spasms hit you withdraw,try to avoid conversation as you battle to control the spasms.The relief for the brief time the spasms abate is bliss in comparison and you return to being a 'normal' person.Spasms are brought on by concentration whether it is reading a book,loooking at computer screen,driving,watching TV.Any kind of stress is also a trigger.

In the middle of last year I asked my specialist if I could have another MRI as the original one had been done at the onset of the condition which had now deteriorated and I also thought that this hospital may have better scanners.He agreed to this and I had the scan. And they found where the problem was.

The surgeon has said that the lay out of the blood vessel and the nerve in my case is unique so they may go inside and find they cannot do anything.However,I'm prepared to take the risk in the hope that if they can they I might be rid of this.If it doesn't work then it's back to the injections.

I'm lucky at work as my boss has had hfs and has had mvd which worked so he is very sympathetic.Everybody at work knows what I've got now and they've been brilliant.

So roll on 14th May(if its not delayed again!).To anybody who reads this message who's got this I know and understand what you're going through.And to those who've already posted thanks for sharing your problem, it's very difficult to understand how bad it can be unless you've got it.

15

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?

16

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.

17

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

18

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

19

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.

20

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