Summary of MVD surgery experiences

Brain and nerves
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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?’)

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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’)

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I had MVD surgery in Feb. 2013 and was in the hospital for 3 days. Pretty sick with vomiting all three days.

Finally at home things settled down, but recovery was longer than expected. It took about 8 weeks and I had no major twitching or spasms, but I did have a quivering under my right eye.....lost my hearing in my right ear and still do not have this back. In June 2013 the spasms started again and were different than before the surgery. I do not get them at night like before so that is a plus, but I am not totally spasm free which I was hoping

for. I hope they will eventually go away since I had this for 4 years before the surgery. Has anyone had this happen where they eventually went away? I was also told by my surgeon that there is no MRI, Xray or Catscan

that can show if the material they put in between the blood vessel and nerve has moved. He said the only way is to go back in with surgery again to see.......no way do I want to go through that again so soon.

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Hi Diane,

Congratulations for a successful (even if only partial thusfar) surgery. I think 8 weeks is a reasonable period for a full recovery from mvd surgery, some have been known to take much longer than that.

How are your spasms now? According to my surgeon, if your improvement is around 80% or more at 6 months post-op, than there is a good chance that they will subside eventually (between 6 months to 3 years in exceptional cases).

You may not receive many replies here as most of us have 'emigrated' to the facebook hfs group. There are 2 support groups, one with over 300 members the other with over 100, both are closed groups and you need to knock on the door to be admitted by the administrators. Then there is also the yahoo hfs support group with many active members sharing their post-surgery recovery experiences. I am sure you will find your answers and lots od support there in no time at all. Please let me know if you need the links.

All the best!

Leon

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Hi.my names Margaret Brady from Ireland. I had hfs for 14 years . I had the op. Last sept 2012. Slowly I felt A improvement My twitch didn't wake me up at nite. My eye did'nt close when driving. But I still has the twitch. About a year after surgery my twitch disappeared altogether. I'm twitch free. I can't believe it. Free to eat out free to look people in the face.wow I'm so happy now. Before my surgery I was like a hermit. Felt depressed. I tried to kill myself once. I thought about killing myself a lot of the time. Nobody understood me.... I know I'm Lucky it worked for me. Don't give up. Give mds a chance to work. My surgeon said he didn't expect it to Work after my last post surgery visit. But 6 months later a different story. I wish you all luck and love may you all be spasm free. Sorry about my emailing skills or lack.. I'm not good at this.. Lol

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Hi Margaret,

Thank you for your input......it makes me feel better knowing there could light at the end of the tunnel.

It is very hard to live with as it has changed me from being a very outgoing person to just wanting to be by myself......You're right, nobody understands this unless they have it. I hope 6 months from now will be a different story for me...trying to stay positive.

Thanks again and good luck to you as well.

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Hi Dianne , I know your MVD was a while ago, more than 1 year so I am interested to ask you if you ever got your hearing back. I had my MVD 7 weeks ago and have lost hearing, there is a tiny....distant sound but almost not there. With the LOUDEST NOISE in my head with terrible dizziness ..doctor says it will come back but in afraid it won't. I'm not worried about balance as I have seen improvement. My spasms have gone. How are yours going?

 

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Hi Margaret. I also live in Ireland. I've  had hfs for about 10 years now. Botox no longer working very well. Can you tell me where you had your surgery & the name of the surgeon. I'm really keen to have surgery but having trouble finding a surgeon in Ireland who is experienced in this operation. Thanks for any help you can suggest.