MVD surgery 8 days ago

A bit quiet here.

Just thought I'd let you know how I was after 17 weeks post-op.

Pleased to say there has been a huge improvement - still got eye twitchings but not whole face grimacing - great news

also the eye twitches are about 1/3 rd as regular as they were beofre the op

so - all in all I am very happy -

particularly as I was resigned to it not having worked at all!

so - keep hoping for the best

Barry

Hi Barry,

Really pleased for you to hear about the huge improvement. I think it is sure sign to a complete resolution before too long. When I had my 2nd follow-up session in October with my surgeon, or rather his assistant, I was told that since my improvement was only about 30% at month 10, it is unlikely that I will become spasm-free in the future.

Do let us know of your progress, especially when you are rid of the twitchings altogether. Sure you will enjoy a very happy and sociable holiday season.

Best wishes

Leon

Hi Barry and Leon and all fellow twitchers

Fantastic news Barry - you must feel really hopeful now and I am sure we're all delighted for you. Keep smiling through the Christmas period and hope you can really begin to enjoy life again.

So sorry that things seem no better Leon - you've been so positive for us all. Fingers crossed that your medic was wrong on this one and that you're just one of those who take longer to heal and recover.

For my own part, I've just put myself back on the list for surgery because the spasms are pretty hard to handle just now. But, what usually happens is that I go into remission before the 4-month wait is up - hope so because surgery is still pretty unappealing, as I am sure it is/was to all of us.

Wishing you all a Happy Christmas with as few twitches as possible, all best, Roseann

Hi everyone

It's great to hear of someone having a success. Barry you deserve it after all you've been through. I could live with a minor eye twitch! Like you, Roseann, I have a dread of the surgery. I think I've mentioned before that if the surgeon/consultant had been more encouraging I probably would have gone ahead with it.

I've had several minor procedures under local anaesthetic - no problem- but I have a terror of general anaesthetic and major surgery.

Hope everyone else is coping as best they can. I wonder if Sean has had any further developments, he doesn't seem to be on this forum any more. Hope he's OK.

Have a good Christmas everyone and all the best for 2013.

Sylvia

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

That is very good news indeed Barry. A new year and a new person! Congratulations!

On behalf of those contemplating surgery, may I ask where you had the surgery done and with which surgeon? I can understand if you do not wish to disclose this information.

Sincerely

Leon

Hi all

Thanks Sylvia and Barry for updating us all, and particularly to Sylvia for sharing your surgery fears which are almost identical to mine. I've tried posting a reply on this forum but have been locked out for a few weeks! However, here I am again.....

I am crossing everything for you Barry and am SO pleased to hear your good news. I know we can all share your joy at being spasm-free and of course we hope and pray that this is the 'new you'.

My spasms are unfortunately worse of late and I am biting the bullet again for surgery. It's likely to be a few months on the waiting list, so plenty of time for me to do a runner.

Happy New Year to all on the forum and here's to us all finding a way forward with our funny faces. All best wishes, Roseann

Hi all,

It's been a while since I have been on, some of you will remember.

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.

I read of people trying various drugs, the simple answer to this terrible problem, is an MVD procedure, nothing else works, you are only avoiding the proper course of action, the one that hopefully works..no Botox or drugs, just go for it, it's a big ask, but ask yourself this question ' do I really want to live my life like this' !

I do hope that anyone out there who is thinking about this, just makes the brave decision, and every chance you can be fixed 1st time, if not, go for a 2nd shot at it, take it from me, I have had this problem bad for 7 years, thanks to my surgeon, he has let me live again.

I wish every one of you the best of luck, please don't be scared, after all it's a week or so out your life, to get all your life back...God Bless.

Sean.

Hi Sean,

That is great news and thank you so much for sharing with us. I am sure everyone here thinks that you are very brave to go through it a second time and that you deserve all the best this time round.

Have a very swift recovery!

Kind regards

Leon

hi all

ive been trying to get on here for ages without success, all its been saying is page unavailable.. anyway firstly congrats sean.. 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

And the good news keeps flooding in :-)

so happy for you Chris, well done! hope your hearing returns soon, for what it's worth as I said before, I am prepared to lose my hearing in one ear too in exchange for getting rid of the spasms (if only it was that simple).

All the best.

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

Great news essyk10, it does take time, but if it has worked, well worth it.

Good luck.

Sean

February seems to be a good month for successful mvd surgery!

hope there's more to come Leon.

Sean