MVD surgery 8 days ago

chris1978 6 May 2012 at 21:25PM

hi everyone

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

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YKL 7 May 2012 at 07:13AM

Hi Chris,

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

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sean thornton 8 May 2012 at 15:34PM

Hi Chris,

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.

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chris1978 9 May 2012 at 01:03AM

hi everyone

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

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Roseann 11 May 2012 at 20:08PM

Hi Chris

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

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YKL 24 May 2012 at 17:31PM

Hi everybody,

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.

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YKL 24 May 2012 at 17:39PM