MVD surgery 8 days ago

Àlright,

I have been to see Prof Cruickshank at The QE in Birmingham and he has advised me that only surgery will correct my right sided hemifacial spasm that i have had for 7 years. It started when i was 32 quite young it appears, and is getting progressively worse. Had botox for 5 years but im sick of it, really dont like the really afterwards.

Those who have had MVD surgery how long were u in hospital for?

Cheers

Phil

Hi Phil

I'm on the waiting list for surgery (due May) and have been told that it's 2-3 days in hospital provided I don't get an infection or any complications. Others seem to have said they have remained 5 days in hospital, but I think this can depend upon whether you have anyone at home to take care of you in the early days of recovery.

Wishing you the very best of luck with your surgery. You are indeed far too young to be putting up with this condition.

Please let us know how you get on if you have the operation before I do. It's really helpful to hear of other people's experiences and success stories (hopefully!). All best wishes, Roseann

Hi roseann, thanks for ur reply.

All the very best with ur surgery, im sure you will be in before, but ill let u know.

Where are u having it done?

Hi, it's me again. Just to give you an update on progress, thank you for asking Roseann! It's just over 4 weeks since the MVD. Unfortunately I haven't yet got any hearing back but I'm not giving up on it just yet. My balance is still off but getting better each day. Despite this, yesterday I have ridden my bike, driven my car briefly which was ok but I need to check with DVLA if there are any restrictions. Also called into work today briefly but have been signed off by GP for another two weeks if I need it.. Neck still a bit stiff and numb , and get tired quite easily, but no painkillers any more and generally feeling that despite the hearing loss, which isn't a great out come,I am so happy I am not twitching any more. I think I can get used to the hearing loss but never the spasms. Phil, I stayed in hospital 5 nights but I live alone and the loss of hearing made me very dizzy. However I stayed with my parents for a week after coming out. I slept loads but I was taking a pain killer containing codeine, which makes you very drowsy and constipated! Watch out for this, it was very, very bad for me. I think it helps recovery to be well looked after but you don't need full time care in my opinion. I wish you the best if you go through with this operation. It is worth the risks. Any questions happy to help.

Alright Adnama,

Glad the twitching has stopped for u and hope ur hearing comes back soon, but as u say its a small price to pay if it stops this horrible embarrasing spasms.

All the best to u.

Hi again Amanda, thanks so much for keeping us all posted on your progress. How fantastic that you've already ridden your bike and driven the car again in spite of the continued dizziness. It sounds like your mood is good and you're feeling really positive - fantastic! I'm sure the hearing loss is tough and I really hope that you may yet recover at least some hearing. But, all things considered, you've done really well and thank God you're spasm free again. I think we'll all raise a glass to that.

If it's not an imposition then please continue to give us updates on your progress. I can't tell you how helpful it is to have this first hand account of how you're doing and how you're coping with it all. And all advice (eg codeine/constipation etc) is more than welcome. I don't mind the drowsiness but don't fancy the other bit!!

Keep getting better and keep smiling too, all best wishes, Roseann

Hi Phil

Good luck to you too. Please let us know how you get on if you get there before I do.

I am being 'done' in Bristol by Mr Nik Patel. This is an NHS op.

Here's to all of us twitchers, young and old, getting better and being 'normal' again. This is one shi* condition and only those who've experienced it will really know how shi* it is eh.

Very best wishes, Roseann

All good, one quick question though does anyone else experience headaches as well. I have headaches of varying intensity that last for several months at a time.

Cheers

Hi Phil,

Hope you have a successful op and wake up free of twitches without any complications. There are a number of good reports here, yes - it will take a good half-hour or so to go through all 14 pages! As for the headaches, mention this to the doctor carrying out your pre-surgery assessment, preferably with a full history of all the medications you have been prescribed. He/She will ask you about any allergies etc.

Best wishes

Leon

Hi Adnama,

Glad that you are recovering well and still spasmfree. It was also almost a month post-surgery before getting over the dizziness for me. Then I was told by the doctor at my follow-up session a month later that I should have taken the ondemet tablets prescribed to me upon discharge. Laxative was also amongst the many items in my 'goodies' bag. I was told to eat prunes to get rid of constipation but I find them unpalatable and carrots are better as substitute.

Get well soon.

Hi Phil

Just to answer your question about headaches............. I had a long history of migraines before getting the spasms, but they seem better now 9 years down the line. When I have spasms (I am one of the lucky ones who gets long remissions, up to 8 months off) then I always feel as if I am not functioning quite normally and living under a dark cloud which feels a bit like a headache without the actual pain. Not sure if this makes sense or is of any help!

I really feel for you, being so young and having to contend with headaches as well as the spasms. Life is far from fair! One thing I do find, is that when I take a tablet called Excedrin (an American headache tablet containing caffeine, paracetamol and aspirin or their equivalent) I get a couple of hours when I feel better and when the spasms are lessened. Might be worth a go?

Take care, cheers, Roseann

Thanks for the response Roseann, i will bear that inmind. I was diagnosed with cluster headaches about 2 years ago, but found that no tablets helped. Hopefully the mvd surgery will help.

The headaches and spasms are all on the right side of my head so im hoping there is some connection!!!

Cheers

Phil

Hello everyone.

I do not have hemifacial spasm but I have vagoglossopharyngeal neuralgia, which is a very painful compression of the 9th & 10th cranial nerves, and in my case the 11th nerve also.

I picked up on this thread as the doctor that diagnosed me is Nik Patel in Bristol. I am making up my mind on having MVD/resection surgery at the moment.

I notice quite a few of you have problems on the right side of your face and I was wondering if any of you also have TMJ problems with your jaw and/or problems with your spine being out of line - both these factors seem to add to my troubles and wondered if it was the same for hemifacial spasm as I have seen some videos of dentists treating it with using dental braces to change the position of the jaw.

Hello again everyone

Roseann - I wouldn't mind trying that Excedrin tablet, but I do drink quite strong coffee anyway and have never suffered from migraines. How do I get hold of it?

Jeffina - I was very interested in the dentist thing. Don't know if it would work for HFS though, maybe worth a try? By the way, my spasms are on the left side of my face. I do wonder if this is more common than the right. Good luck with your decision whether or not to go for surgery. As I have said before, I admit I am terrified of it but it has certainly helped many on this site - even some people going for it a second time. Botox never worked for me either.

Trying to live with this condition is difficult. I use every trick in the book to try and disguise it from pretending to be concentrating hard or pretending the sun/wind is in my eye. It is a great relief when I get a few seconds respite, but it is sadly short-lived. My only consolation is that I could have something a great deal worse.

Good luck and best wishes to you all.

Sylvia

Alright jEffina,

I dont have such problems. Hfs does not give any pain, thankfully, and is more embarrasing than anything else.

Alright sylv, yep used all those tricks as well i must look like a right wierdo sometimes!!!