MVD surgery 8 days ago

Hi Sean, Chris and 'Essy'

I am OVER THE MOON for you all and can't thank you enough for sharing your good news (as well as some of the less good bits) with us all . The recurrent theme is that you've all 'got your life back' and that's something we'll all raise a glass to .

Just hope that Leon will recover naturally too and that those of us who are on the list for surgery will be able to draw from your bravery and good fortune.

Well done to you all and may your recoveries go from strength to strength. Will let you know how I get on with surgery when and if it happens - pre-op assessment next week - scared stiff!

Love to you all, Roseann

Hi Roseann,

Thank you for your words.

I understand you will be scared, so was I, but I really think it's worth a week or 2 out of your life, to get your life back.

Are your spasms still as bad ? is it making your life miserable ? I'm still just 1 week post-op, not out the woods yet,no energy, but I'm managing to eat healthy, taking my tabz, and getting a sleep, which is good for me.

I'm praying that I will mend soon, not blessed with patience, but I know it's a major operation, so it takes a major time to heel.

I hope you get the strength to go for it Roseann, any questions, just ask me, I'm an old hand at this surgery..lol..

God Bless. and good luck to all of you my friends.

Sean

Hi Sean

Thanks so much for this message. I've sent you a private message as don't want to bore everyone with my stuff.

God bless you too and I'll certainly send up a prayer for all our recoveries, but particularly yours. And I may well bombard you with questions once I've had my pre-op assessment next week. The op may be much further down the line because Mr Patel at the Frenchay has 90 on his waiting list for surgery (not all HFS of course).

Take care, be patient, go gently on yourself and keep getting BETTER.

All best, Roseann

hi roseann

hang in there, it took me 2yrs from being offered the surgery to actually going through with it as i was that scared.. 34yrs old, a wife and 2 beautifull kids at 6 and11yr old.. obviously you think the worst when you have to contimplate any operation but i can 100% say im so glad i went through with at this moment in time, think im about 16 days after the op and had no signs of the spasms and thats the longest ive gone in 10 yrs.. yes ive gone deaf in 1 ear temp or perm i dont know yet but you know what if the hfs as gone i really really dont care.. your surgeon wouldnt be mr u.j patel by any chance would it, tall indian man with long silver hair as thats the man who did my op..your more than welcome to private message me if you want, that includes anyone who has question that maybe i could help with, even facebook if you like

all the best everyone

Hi again Chris

I really am SO pleased for you and thanks so much for telling me how scared you were - it really helps to know that I'm not the only coward. At 34 you definitely did the right thing and I can't imagine what a difference this will make to your family life. It's not good that you've lost some hearing, but I am inclined to agree with you that some hearing loss is preferable to the spasms which are so emotionally blunting.

My surgeon is not U J Patel, he's one Nik Patel and operates in Bristol. Actually he's very tall and slightly scary but he clearly understands HFS and that's all that matters....... well, as long as he's good with a drill and microscope too of course! But, let's hope that Patel is a lucky man for both of us eh.

I may well send you some questions on a private message after my pre-op assessment this week - thanks for the offer - nothing like first hand experience and advice.

Keep on getting better and 'keep smiling' too. All the best and well done Chris, Roseann

We have come a long way since the very first post relating to HFS on this website on 23 Oct 2006. I have cut and paste the account of everyone who has shared their MVD surgery here and hope that this would provide useful information to all HFS patients.

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i had surgery in 2002 for hfs and it went instanty. i woke up and thought

i had died and gone to heaven, after suffering for nearly 6 years and goodness knows how much botox i went through.

7 years on i now have a slight tic if i'm tired or agitated, but nothing i can't live with. PLEASE DON'T BE FRIGHTENED OF SURGERY, Get your life back.

Guest 8 Sep 2009 (thread ‘post op’)

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Hi Bumble,

I have had HFS since late 1990 and had the microvascular decompression in 1991. The spasms returned within 6 months. I started with the Botox injections in January 2003, in fact I am going for an injection this afternoon. The problem with the injections is that they don't always seem to work, its kind of hit and miss. I suppose I have had the condition for so long I have learned to live with it and often use the condition as an ice breaker and I am still waiting to be slapped for winking at people.

Guest 18 Sep 2007 (thread ‘Support group for HFS sufferers’)

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After an mri can which confirmed a blood vessel pressing on a nerve I was offered the op and despite the seriousness of the surgery I decided to go ahead as I couldn't live with the condition any longer. I had the op within 8 weeks of seeing him and on Dec 7th 2010 I underwent the op. I can honestly say it wasn't half as bad as I expected! I was in hospital for 5 days.I felt rough for the first 2 days but after that I'VE BEEN FINE AND AM NOW SPASM FREE!

Guest 3 Jan 2011 (thread ‘Facial Spasams’)

Also posted as LoobyLoo59 8 Feb 2012 (thread ‘remitting hemi facial spasm - surgery or not’)

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I had microvascular decompression surgery for hemifacial spasm (suffered for 5 years) on February 1, 2012. I would encourage all of you to contact Dr. Raymond Sekula in Erie, PA Hamot Hospital. Dr. Sekula trained under Dr. Peter Jannetta who developed the procedure in the US. I am now on my third week of recovery and have remained spasm free, can't even explain how wonderful it is. Dr. Sekula has a 94% success rate and has completed over 250 surgeries. For a condition that effects only 1 out of every 100,000 people, he has done a considerable amount. He is a fantastic surgeon and a wonderful person.

Margaretann12345 27 Feb 2012 (thread ‘hemi facial spasms’)

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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

Guest 16 Jan 2010 (thread ‘HFS and MVD’)

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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

Philsmudge 14 Jul 2010 (thread ‘HFS and MVD’)

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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. Although I 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 couldn’t 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.

suewithout 17 Jul 2010 (thread ‘HFS and MVD’)

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Hi I'm from canada and I had the surgery 2yrs this august. Unfortunetly it didn't work. I have had it for well over 15yr before I had the surgery I had tried botox and it didn't work. I had the surgery and I was told that the sucess rate was about 98% . I had the surgery and the doctor told my family that by weeks (7days) end the spasms would be gone. They were not. It was improved by the surgery about 45%. But as a result of the surgery I have numerous other severe problems. They include severe headaches when laughing, bending, lifting, running exersiceing having a bowel movement or any of the things I took for granted. I was told by the doctor that I was a uniqe individual and that given time the spasms would stop...they have not. i would love to know if any one else has experienced any thing like this and what they are doing to inprove their quality of life.

Thanks for reading.

Rainey57 8 Aug 2012 (thread ‘MVD Surgery’)

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I had MVD surgery in the USA in July 2010, the outcome is that the spasm remains, I have lost my hearing on my right side and am considering a crossover hearing aid because one sided hearing is quite horrible. I have tried botox three times so far and noticed no difference at all. I now have tinnitus, poor balance and generally am being driven crazy. Do think it through before having this very risky surgery.

Zaedlo 22 Oct 2012 (thread ‘Hemifacial Spasm’)

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Just 6 days post-MVD, just starting to feel something like myself (while lying or sitting, at least), I'm already getting down about the twitch being about as bad as ever, despite repeated reassurances from a surgeon I trust that they will improve after what he saw and did inside my head.

Hey noony mouse 17 Jun 2012 (thread ‘Spasm-free post-MVD surgery?’)

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I've had MVD a week ago with spasms still presistent. I was also told that spasms should decrease over time..

ABCDEF 3 Oct 2012 (thread ‘Spasm-free post-MVD surgery?’)

Hi I had MVD on 21st January 2013 after suffering with hfs for 18 months. I am not spasm free, although things are beginning to settle down.

Lynn22 on 13 Feb 2013 (thread ‘HEMIFACIAL SPASMS’)

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I am 53yrs of age from Scotland, I had my MVD operation in Nov 2011, I still have my right side spasms, and I am very dissapointed they are still present.

I am hoping that through time they will go away, maybe nerve damage can take many months.

Sean 24 Jan 2012 (thread ‘MVD surgery 8 days ago’)

I had a failed MVD in 2011, and struggled on with the spasms, till I couldn't stand it no more, so I got the option for a 2nd MVD which has just been done, I am only on the 2nd day out of hospital after a week, and I am glad too say I AM SPASM FREE! I am the happiest man, I felt so bad coming round the 1st time and my spasms still obvious, but this time, I have spent all the time waiting on the usual jaw pulling up etc when I start to speak, having a full conversation and no spasm, simply means, I have my life back, I dreamed of this day, it has been a huge toil, but the years spent on that useless Botox, is simply crazy when I think of it now, after all, it only slightly helps, and the face palsy the comes with it is no good to no one.

Sean 13 Feb 2013 (thread ‘MVD surgery 8 days ago’)

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I have had an MVD 12 days ago.

I was a bit reluctant to join a forum as I felt there'd probably only be posts from people where the procedure failed -

I am so totally confused now - straight after the op the assistant surgeon (registrar) basically gave me the impression that he was very disappointed that it had failed as I still had the vicious twitch - seeing - as he said they had clearly seen an indentation and had put the teflon in place.

I was gutted.

Since then I have spoken to him and I don't know if I put words in his mouth but I got him to say that it was possible that the position could (not would) improve with time. Why didn't he say that in the first place?

I am hopeful - even if it is false hope that I will improve.

The spasms have totally changed their pattern - I seem to have longer periods spasm free but when I do get them they seem to be much more prolonged and intense. I will keep you posted.

Bazzer 21 Aug 2012 (thread ‘MVD surgery 8 days ago’)

I hope you all don't mind me posting this but it will give hope to some -

a bit scared to say it out loud BUT

I am not twitching anymore! must be at least a week that I think I last did

Wonderful

keep waiting for it to happen again of course - not believeing it has worked eventually - after all the agont and disappointment etc

Good luck to you all

Barry

Bazzer 10 Jan 2013 (thread ‘MVD surgery 8 days ago’)

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I had my first MVD surgery in April 2012 ( I had only finished my last of a 2.5 botex treatment 3 months prior) It was a terrible experience, I had a leak, the incision got infected, I got a virus from one of the doctors in the OR ( i was the only one that got this no one else in my family but when I went back to the OR 4 days after leaving the hospital with a terrible headache this neo doc took care of me and said he was in the operation room and I had a virus he has and he has had it for 3 months) grrrrrrrr I was not happy someone was allowedin the OR when they were sick. So I have been blowing my nose this is a very big no no, I blew the capping they but over the ear . I had spasm bad still, headache , pain in the side of my head where they drilled the whole felt like a bad tooth ache all the time. 2 MRI,s, lumbar punture, ct scans.. you name it they did it , trying to find the leak. We discussed with all the scar tissue building and the leak being contained inside that the MVD surgery would have to be redone. So September 17th was the day. Now this time do to all the complicatoins they had to bring in a special in dease/virus control to make sure procedures were done properly, my actual surgereon did the operation with his assistant , no students worked on me at all this time ( not that I cared if they did they have to learn ) I feel good, the spasm are hardly there, no headaches so far ( 8 days post today) balance off a bit, ear not sore and my hearing is back. I do have a terrible taste in my mouth but maybe part of the process. When they went in they found another nerve closed so they cleaned it up, moved the three nerves around put another spacer in so now there is two, cleaned up the scar tissue and when he reopened the whole they drilled the first time , out came tons of fluid he said, he does not know how I did my daily routine with this pressure.. ( ummmmmmmm that is what I was telling them but life has to go on) . So I am pleased to say I have had great success with my second one and my spams are hardly any and nothing no one would even notice . I was the best thing I did for me and my family and am 49 turning 50.

Cathie lynn 25 Sep 2012 (thread ‘MVD surgery 8 days ago’)

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I had my MVD eight days ago (just like your original discussion title).

I had it on the Wednesday and came home on the Sunday. I only have about 50% hearing on my right side and feel like my head is in a vice. You were so lucky not to have a headache by day 8! I am popping pills like they are going out of style. I have been assured my hearing will improve within a month or so. I haven't managed to leave the house yet as I feel so dizzy. The good news is that my spasms are greatly reduced.

Kassy D 18 Sep 2012 (thread ‘MVD surgery 8 days ago’)

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.

Kassy D 28 Sep 2012 (thread ‘MVD surgery 8 days ago)

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i have good news as well i had my op done 12 days ago now and havnt suffered with spasms since, my surgeon said to wait 3 month thou for a definate outcome but he seems pretty convinced that all went well.. had 1 complication2 days after the op which is ive gone deaf in my left ear, surgeon said theres only 2 reported cases in the world to have suffered this so pretty unlucky i guess, could be perm or could be a 6 month thing but if the spasms have gone i would have swapped the hearing in one ear for the spasms any day of the week... i not gonna lie i have been feeling pretty ruff and been sick on a few occassions during recovery but im so glad i went through with it, my balance and co-ordination is still well off but theyve told me i,ll be good in 6 week.. its taken me 10 year but i think i may have got my life back at the age of 34

best of luck everyone

Chris1978 13 Feb 2013 (thread ‘MVD surgery 8 days ago’)

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Am 31 and I had my surgery on the 1st on Feb and believe it or not am pain free. However, my left ear is blocked but I can hear a lil bit. It's only temporary so am not bothered. I've reduced my carbamazepine to 200mgs and within 2 wks I'll be done. I had a headache the 1st 3 days but that was controlled with codeine and paracetamol. They also did a lumbar puncture during surgery cos am young in order to have to have easy access to the brain by removing some fluid. I have no regrets for having this procedure. I was apprehensive at first but it's only human to be scared. Xx

Essyk10 13 Feb 2013 (thread ‘MVD surgery 8 days ago’)

Hi again Leon and everyone

Do hope the x 3 success stories of Feb 2013 continue to read well.

Thanks Leon for posting this trail of MVD experiences - some of it makes really encouraging reading and some less so. But hope everyone has seen some improvement by now, including you of course.

I had a copy of a letter that my surgeon has written to my GP yesterday. He told her that I am keen to go ahead with the surgery in spite of the risks being: stroke, death, infection, wound haematoma, facial weakness, hearing impairment, bulbar disturbance and cerebrospinal fluid leakage. Yikes, that's a lot to look forward to then.......................... I wonder if everyone else was told of stroke as a risk factor? That's one that I had hoped not to see!

Take care y'all, best wishes, Roseann

everything you mentioned roseann i was told about as well, the stroke issue is just your bdys way of saying is it able to deal with being cut open, you will never really know i suppose.. plus its only something like a 1% chance

I am 52 and had been suffering fro HFS for around 4 years.

Have returned home from Atkinson Morley, London, where I underwent the MVD Op to hopefully cure my HFS. I am delighted that it worked immediately, on coming round in recovery. Unfortunately I have

lost hearing in the left ear which may return if I am lucky, but I am not banking on it! Am feeling very

unbalanced and a bit dizzy still, and my hearing is all over the place, but each day I am managing to eat moreand do more and I have no regrets whatsoever. It is such a relief to be free of those awful irritating spasms

and I am sure that I will get used to it over time. It's not quite a week since the operation, patience is required here! I would happily wear a hearing aid if I feel the need to. It was a risk I was prepared to take. Just so

pleased that it worked for me.

Hi Adnama

So pleased to hear that you've come out of your surgery spasm free - wonderful news, and heartening for those of us who haven't yet been as brave as you.

Really hope that the dizziness and one sided deafness will soon improve - it must be tough to feel dizzy and lopsided too, but, as you say, better than the spasms.

Please keep us all posted on how you're doing. It would be really helpful to me to have a weekly update on your recovery if you are up to it.

Very best wishes and well done! Roseann

I am 12 days post op now, back in my own home. Feeling off balance a bit, travelling in a car is very odd,

bumpy and disorientating but due in part to the loss of hearing in one ear. I am hoping this might improve but if it doesn't I have been

assured I wll get used to it in time. Hearing in my good ear has become very sensitive to certain noise like

rustled crisp bags and boiling kettles. As far as the head goes scar healed up well, still numb all around the

area. Not needing anti nausea tablets now or pain killers so regularly.

And no sign of any spasm still which still amazes me. For that I am very grateful.

Hi again Adnama

Thanks so much for the update and for all the detail which I, for one, find very interesting. Very sorry that your hearing has not yet returned, but all fingers crossed that it will do. Really hope that your balance will soon be completely restored too - that must be a strange and unpleasant feeling.

Please give us another update in a week or two if you can find the time and energy. I am twitching madly as I write this, so am delighted for you that at least that symptom seems to be gone for good.

Take care and be patient, all best, Roseann

Hi Adnama,

So pleased for you that the spasms have stopped immediately after surgery. It seems that other than the loss of hearing in one ear and dizziness, you don't have complications like infection, loss of appetite or spinal fluid leaks. The numbness on the skull will probably last for several more weeks, maybe that is why the incision wound does not hurt as much as I thought it would. Have you had the staples removed yet? I was surprised how easily and painlessly they came off.

Hope you have a speedy recovery and your hearing returning.

best wishes!

Thanks for the messages, stitches came out last Tuesday, all fine with that an no pain at all. In many respects I consider I have been lucky because its not good for everyone but I suspect that those without any problems at all don't feel the need to share their story on these forums?!!! I find it very helpful even now to read about

recovery experience etc

Best wishes