MVD surgery 8 days ago

Can you tell me what consultant you saw and was it in Glasgow or Edinburgh and where did you have surgery?

Thanks

Esther

As I said in my post of 3 May, I took Tegretol (Tegretol Retard) last year and it made me function like a zombie - half asleep and unsteady on my feet to the point of almost falling over several times. Also, the spasms were still as bad. But by all means give it a go, it may not have that effect on you.

Sylvia

I have read your comments and would like to offer you some support and encouragement by telling you my experience of hemifacial spasm.

I was diagnosed with HS approx 5 years ago after suffering debilitating spasms and twitches in the right side of my face including the mouth. I found this totally embarrasing and even stopped going out for a while.I always tended to cover the right side with my hand and I couldn't look anybody in the eye as I was so embarrassed!

I went to see my GP who sent me to the hospital for tests and after being diagnosed with HS I was told there was no cure but botox injections were offered to ease the spasms. I was devastated to say the least but went ahead with the botox for approx 4 years but after having the injections every 12 weeks they were becoming less effective so I had them every 10 (at my request) Eventually it was wearing off after 5 weeks but wasn't allowed any more until the 10 weeks were up.

Meanwhile, despite numerous searches on the internet for any help about this condition, I signed up for GOOGLE alerts re hemifacial spasm and after a while I was sent an email regarding an article in the daily mail newspaper about an actor who had the condition but had an operation in Bristol and was now cured! This was music to my ears as I thought this operation was only available in America

To cut a long story short, I immediately went back to my GP, showed him this article and asked to be referred back to the neurosurgeon.

I was then sent to see a different neurosurgeon in Leeds who was an absolute marvel He was most disgusted that I'd had Botox for 4 years as the operation has always been available here.............nobody had offered that information before. I could have kissed him

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!!

I would urge you not to suffer any more and go and see a neurosurgeon as soon as possible.............I can highly recommend it, there is nothing to be afraid of.

I hope this offers you some hope..............it just shows that it pays to research your condition as otherwise without the internet I would still be suffering.

Good luck to you

(posted by guest on 3 Jan 2011 on the thread ‘Facial Spasms’ started by guest)

I had my MVD done in Edinburgh Western General in November 2011 by Mr Statham, waiting for my appointment to go back to see him, end of this month, no doubt to discuss a 2nd, as they discovered another loop adjacent to where they placed the sponge in the 1st op !! so here we go again, lets hope it works this time..

Cheers for now.

Sean.

my surgeons consultant is 50/50 about advising me to go ahead with the op...the reason being i had 2 mri scans, the 1st one showed the nerve and vessle sitting so close to each other that it caused concern thus putting me forward for the surgery but the 2nd mri scan didnt show the poblem.. has anyone else had this experiance, and if so did you proceed...i am ready for the op but like i say his consultant keeps throwing negatives at me which isnt helping one bit

I remember someone had an MRI scan with a contrast dye to show a clearer image, and wonder if this would help in your situation.

As I have mentioned before, my surgeon did not encourage me with the surgery at all, even telling me just 10 minutes before the surgery (while wearing his full operating gown!) that it might not work! Not exactly what a patient wants to hear but just a reality that success is not guaranteed. I suppose your surgeon did not give you a clear answer either when asked about his success rate with MVD surgeries. The lady who carried out my pre-surgery assessment told me that I could get this information from the surgeon's secretary, but that was just a week before the scheduled surgery and I have long since decided to go ahead because I could not put up with the spasms any longer. Maybe getting your surgeon's record now will help you with your decision. I am sure that all of us who have opted for surgery have been through the same stage agonising over that decision, but the poor quality of life eventually pushed us towards it.

Best wishes

Leon

It is similar to my situation, having had a failed MVD in November, I have had another MRI which now shows another loop adjacent to the sponge that was placed 1st time, now, I can't understand why this was not noticed whilst doing the surgery ! now I have to go through it all again, the worry/stress on the run up to whenever surgery is to take place, if I had the money, I would be on the 1st plane to Pittsburgh, to the hospital where they do 90 plus MVD'S a year, lots of experience, the surgeons in this country, excluding one or two, just lack the experience to perform this without problems arising.

As for your surgeon hitting you with negative vibes, just ask him straight out, ' do you feel confident enough to perform this type of surgery' ?? how many MVD's for HFS have you done ? and if he is unsure, ask to be reffered to someone who has the experience.

I get the feeling, we are being used as guinea pigs at times, good practice for them though, on us !!

All the best friend.

Sean.

the surgeon keeps saying i can do this and i can do that and seems very confident that hes totally convinced me, the only delay is on my behalf, having been told you might go deaf or you might lose feeling down the left hand side of your body but ive come to terms with that now, but now i said yes hes sent me to see his partner whos just throwing all these negatives at me saying im not sure because your 2nd mri scan was different ect, i go to see him on thursday to see whats what, will keep you all informed...anyone reading this thats not sure about the op, ive spent 5 year suffering with this and nothing from medication to botox has helped so only one outcome (for me) and thats surgery for this damm illness or whatever you want to call it...i'll be glad to give it a go now. im only 33 i cant spend the next 30 + year like this

just glad i found this website to see im not the onlly person in this world, kept thinking id done something wrong in a previous life or something...thanks everyone

Really feel for you with these mixed messages from your pair of consultants! I totally agree with what Leon and Sean have written above - you need to ask some very straight questions (write them down in advance or you'll get sidetracked) and if you're not entirely happy with the answers then ask your GP to refer you somewhere else. I did 3 different hospitals (and refused to see one of the consultants again due to his total lack of empathy and sympathy for HFS) before my GP referred me to Bristol (where I feel that I shall be in safe and experienced hands if and when I decide to go ahead with the operation).

Pleased to report that I am still in complete remission, but completely understand the desperation that you feel about the spasms. It must be worse when you are younger, but it's no joke at any age - I've had it more on than off for 8 years now and it b***ered up my career as well as my ability to socialise and feel confident. Completely blunts you emotionally and the chance of a cure is like offering you your life back.

Wishing you all the luck in the world and a successful operation in safe hands.

Roseann

I found the following abstract by Prof Coakham in the summer 2007 edition of Dystonia Matters which provides an interesting read, on success rate, risks etc.

The doctor’s view by Professor Hugh Coakham

Frenchay Hospital, Bristol

Hemifacial spasm is a troublesome and embarrassing condition which

causes continuous twitching and grimacing of one side of the face. It is

one of a group of ‘over active cranial nerve syndromes’ caused by a small

blood vessel, usually an artery, which compresses the nerve resulting in

damage to the internal structure. The nerve is like an electrical cable

consisting of many wires, each of which is insulated to prevent short

circuits. The continuous pressure causes the insulation (myelin) to be

worn away and also compresses the bare wires (axons) close together.

This results in short circuits sending waves of ‘electric shocks’ – known

as ephaptic transmission to the facial muscles. Dr Peter Jannetta of

Pittsburgh, USA, first proposed this theory which was later proved by

research in Bristol studying the related condition of trigeminal neuralgia.

Jannetta showed that by moving the blood vessel away from the

nerve the facial spasms could be cured. The operation is known as

microvascular decompression (MVD) and is now performed worldwide.

We began MVD for HFS at Bristol in 1980 and have now carried out

about 200 procedures with 82% of patients cured, 11% improved

and 7% no change – results similar to other centres around the world.

The failure to cure is sometimes because several blood vessels

are in abnormal contact with the nerve and the wrong one is moved.

The majority of these patients can be cured by identifying the responsible

blood vessel in a repeat operation, as in the case of Mrs Bristow.

A new technique known as Lateral Spread Response (LSR) monitoring,

developed in the USA, has helped to confirm that the ‘offending vessel’

has been correctly identified. This method measures the abnormal ‘short

circuit’ activity (ephapsis) which then stops as soon as the responsible

blood vessel is moved away from the nerve, so that the surgeon knows

he has reached his target.

At Frenchay Hospital we are lucky to have the Grey Walter Department

of Neurophysiology whose scientists have great experience in monitoring

cranial nerve activity during surgery and thereby help to achieve

improved results. In addition to monitoring the LSR, they also monitor

the hearing nerve which lies close to the facial nerve and this helps

reduce the small risk of damage to hearing which can otherwise occur

in about 5% of cases.

I found the following abstract by Prof Coakham in the summer 2007 edition of Dystonia Matters which provides an interesting read, on success rate, risks etc.

The doctor’s view by Professor Hugh Coakham

Frenchay Hospital, Bristol

Hemifacial spasm is a troublesome and embarrassing condition which

causes continuous twitching and grimacing of one side of the face. It is

one of a group of ‘over active cranial nerve syndromes’ caused by a small

blood vessel, usually an artery, which compresses the nerve resulting in

damage to the internal structure. The nerve is like an electrical cable

consisting of many wires, each of which is insulated to prevent short

circuits. The continuous pressure causes the insulation (myelin) to be

worn away and also compresses the bare wires (axons) close together.

This results in short circuits sending waves of ‘electric shocks’ – known

as ephaptic transmission to the facial muscles. Dr Peter Jannetta of

Pittsburgh, USA, first proposed this theory which was later proved by

research in Bristol studying the related condition of trigeminal neuralgia.

Jannetta showed that by moving the blood vessel away from the

nerve the facial spasms could be cured. The operation is known as

microvascular decompression (MVD) and is now performed worldwide.

We began MVD for HFS at Bristol in 1980 and have now carried out

about 200 procedures with 82% of patients cured, 11% improved

and 7% no change – results similar to other centres around the world.

The failure to cure is sometimes because several blood vessels

are in abnormal contact with the nerve and the wrong one is moved.

The majority of these patients can be cured by identifying the responsible

blood vessel in a repeat operation, as in the case of Mrs Bristow.

A new technique known as Lateral Spread Response (LSR) monitoring,

developed in the USA, has helped to confirm that the ‘offending vessel’

has been correctly identified. This method measures the abnormal ‘short

circuit’ activity (ephapsis) which then stops as soon as the responsible

blood vessel is moved away from the nerve, so that the surgeon knows

he has reached his target.

At Frenchay Hospital we are lucky to have the Grey Walter Department

of Neurophysiology whose scientists have great experience in monitoring

cranial nerve activity during surgery and thereby help to achieve

improved results. In addition to monitoring the LSR, they also monitor

the hearing nerve which lies close to the facial nerve and this helps

reduce the small risk of damage to hearing which can otherwise occur

in about 5% of cases.

Thanks for the above which is very useful indeed, particularly as I am a patient of the Frenchay in Bristol. I did see Prof Coakham and he explained all of this to me, but it's hard to retain it in this sort of detail.

How is your recovery going? Really hope the spasms are reducing day by day.

My remission seems to be coming to an end (but, 'mustn't grumble' have had 3 months off). The spasms are as yet weak but I know that they are on the up again.

All best and really hope you and everyone else are doing OK, Roseann

I am glad that you find the above helpful and also thank you for you good wishes. I would consider my recovery from surgery complete since week 8, though I still have these spasms. At this stage I belong to the '11% group ' showing improvement after surgery. Hopefully in the coming months, I can report on a spasm-free status. I have another follow-up session at the hospital in August, and if the spasms are still present, I may ask the surgeon whether I should go for another mri scan just to ascertain if there are other arteries impinging on the facial nerve. I suppose there is still a good chance that the spasms will disappear judging by the length of time the nerve takes to heal, from the other patients' experiences.

Very sorry to hear that your 'spasm-free holiday' seems to be ending. It does make your decision (surgery or not) so much harder not knowing when is your next remission.

kind regards

Leon

Just remembered that when I mentioned the Lateral Spread Response monitoring at my consultation, the lady consultant said she had never heard of it. I just assumed at the time that perhaps they had another name for it. But after hearing about Sean's experience it does seem some hospitals are better equipped than others. Very worrying! To have to go through it all again - it makes you think there must be some other, less invasive way of curing this damn thing. Perhaps if this condition was more common (it seems to be getting that way) there would be more research done.

My consultant also said we were born with this but no-one knew why it suddenly appeared later in life. Prof Coakham's description of the pressure causing erosion of the nerve-coating explains this exactly. It's very unfortunate that this seems to be happening to younger people these days. My heart goes out to them as it's bad enough having this at my fairly advanced age.

Roll on the days when the cure will be a simple procedure rather than the major operation that it presently is.

Cheers friends

Sylvia

I go for my consultation on Thursday 31st May, no doubt for a date for my 2nd MVD, I'll keep you posted.

Sean.