Dysport

Just read experiences of the MVD. I will have to wait for further deterioration it seems before my doctor will consider an MRI. I was also told that this is quite common!

Hello. I have been having Dysport injections for about 10 years. I was having them every 16 weeks but for the last few years it has been every 12 weeks. I to have a droopy eyelid and a frozen face on one side and when I smile only the left hand side of my face and mouth moves. They seem to take the edge off the spasms but they have never stopped them completely. I am now seriously thinking of having the op. Silly really but the girls among us will understand this. How good would it be to be able to put your lipstick/lipgloss onto lips that are straight and not droopy. I have 4 injections around my right eye ,two down the platysmal band in front of neck and one in a little band at side of neck.

Hello. I'm pleased to have found this forum. I have been having Dysport jabs for HFS on the right side of my face every 3 months for the last 8 years, since it was diagnosed. They do not stop the symptoms but often reduce them. Generally I have 3 jabs above the brow bone and one on the cheek area but they often have to be moved depending on the symptoms I've been experiencing. It can be rather 'hit & miss' as sometimes it's easier for my nurse (who is very experienced) to feel the source of the muscle movement than others. The jabs above the eye have had to be raised to nearer the hairline to avoid the eyelid shutting of its own accord, which causes a lot of sight problems and deters me from driving. The spasms started with eye twitching and have over the years spread down the whole side of my face. They affect my eating and drinking which I no longer care to do in public (dribbling!!) but worst I find interfere with reading and close work. I have asked several times about the MVD op but the neurosurgeon's stance is that it is too dangerous. In that case why do many other hospitals appear to be doing it, especially in the USA? I have offered to pay but no difference. In view of this I am very interested in seeing how people who have had the op in Britain are faring.

Hi Nanny,

I had hfs for over 5 years, being treated with botox injections for 4 years, before undergoing mvd surgery in January this year. I still have the spasms now but much lesser than pre-surgery. I have copied below the experiences of other patients who have had mvd surgery in the UK and hope they help.

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.

(Posted by suewithout on 17 July 2010 on the thread ‘HFS and MVD‘ started by JackieH)

Hi

I had MVD surgery in Leeds in Dec 2010 and it is the best thing I ever did!!

I had suffered from Hemifacial spasm for nearly 6 years prior to this and it really was the bain of my life!

The very thought of having my photo taken sent me into a panic and I constantly covered my face with my hand.

I fully understand how you feel....

The surgery was a complete success and despite the first 2 days of feeling really groggy and sick, I had NO PAIN at all afterwards as the wound was numbed.

I was in hospital for 5 days and had the best care from the consultant. I was off work 8 weeks to recover and I can honestly say it has changed my life.

I am much more my old cheery self and have now had umpteen photos taken........the change is unbelievable.

I no longer have ANY spasms or twitches and my smile is back to normal!

I wish you all the best whatever you decide but I would certainly encourage you to have it.....it's definatly worth it.

Linda

(posted by loobyloo59 on 8 Feb 2012 on the thread ‘Remitting Hemifacial Spasm - surgery or not?’ started by Roseann)

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

(posted by guest on 16 Jan 2010 on the thread ‘HFS and MVD’ started by JackieH)

Hi YKL

Thank you for your helpful reply and taking the trouble to find relevant posts. I'm really going to have to have a serious discussion about this next time I go for my jabs.

All the best