MVD surgery 8 days ago

Hi Barry,

Here is the full message posted by 'suewithout' (the minibus driver) on the thread 'HFS and MVD'

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.

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Wishing you a very speedy recovery

Leon

Barry,

As I said on my message to you, the surgeon should have manned up and told you the surgery has failed mate..if your still having spasms after surgery, then sorry to be negative, it has failed mate...

I know, been there...

Good luck mate.

Sean..still twitching...useless surgeons..

Hi Sean

I certainly understand that you are bitterly disappointed - to put it mildly! I am too.

The surgeon did emphasize all the negatives which in itself was worrying and nearly caused me to cancel

HOWEVER - there are people out there who have stopped twitching after a certain time - surely I can hope that possibly I may be one of those?

As for the driving? - thanks Leon for your message - but I am still unwiser -

is there a mandatory driving ban?

I phoned the dvla who say I must ask the doctor (difficult to get through to them on best of days!) who seemed to think it was the dvla who I should phone?

Thanks for input

Barry

Barry,

I have had this for 7 years or so, Botox for many years, never a mention was made re DVLA. Don't worry about it, you are NOT banned..my surgeon said quote ' why should you not drive !!, you can drive legally with one eye ' unquote..so put it to bed mate...

Cheers.

Sean..

Sean

thanks again for getting back to me

It's not the one eye bit - it's that I have had surgery that comes under "craniotomy" and it's because of that that I believe I have to surrender my license for 6 months.

I have just had a voice-mail message from the surgeons secretary that I think confirms this - was an awful line - my mobile signal is poor here so thats why it went to voice-mail - and then a poor recording!

Thanks

Barry

Hi Barry

So sorry that things don't look positive after your surgery, it must be so disheartening and I can imagine how disappointed you feel - know I would, if I was brave enough to have the surgery!

It's interesting that no one else seems to have had this issue with being able to drive after the op. It's totally crazy because you are surely no worse after the op than you were before it. Wish you all the very best both with your recovery and with getting back in the driving seat. Please could you let us all know what the outcome is - it's highly relevant and a major consideration for those of us who are still pondering surgery. My experience of DVLA and drving bans is that it should be considered on individual risk, not on a blanket basis based on the surgery you've undergone. Best to talk to your GP methinks!

Very best wishes, Roseann

Roseann hello

thanks for your thoughts.

When are you due for your op?

I am afraid that it is a gamble you are probably going to have to take because if you don't then it will be a case of "you would never know....."

I didn't enjoy the experience one iota but considering everything I know I did the right thing by having the op - especially as I am still hopeful of a positive outcome - which there would be NO chance of if I didn't have the op.

I will certainly keep you posted

Barry

Hi Barry

Thanks for encouraging words - you've been very brave in having the op and you're right to remain positive about some improvement.

I am a bit of a wreck! I have lots of pain (which prevents me from sleeping) from a frozen shoulder and have been offered an op to alleviate this. I need to get this sorted first because the pain is even worse than the spasms. Yikes, life's a blast isn't it.

Take care of yourself and keep smiling (ha ha), Roseann

Please fight hard to keep driving and challenge any negative decision. Either we should all be off the road or none of us - the system seems very arbitrary.

Hi Roseann,

Really sorry to hear that you are still suffering from a painful shoulder. You are absolutely right about getting this sorted out before considering mvd surgery. I had to lie on just one side whenever I am in bed for the best part of 3 months post op. I am sure that would make a frozen shoulder feel worst by doing so.

Hope you are referred to an experienced and competent specialist/surgeon and cured soon.

Best wishes

Leon

Thanks Leon - it's really heartening to have friends on this forum who genuinely care and understand. You are of course right that it would be almost impossible to cope with this shoulder problem as well as any post mvd surgery complications. I reckon I must have been quite wicked in my younger years to deserve all this cr**! Oh yikes it's the catholic guilt.......

The NHS has really let me down with this shoulder problem - 8 months of agonising night time pain and they still wouldn't refer me to a consultant. I went to see someone privately in the end and he's offered me surgery on the NHS!

Hope you're making some progress towards being spasm-free. You certainly deserve some good news very soon.

All best, Roseann

all seems to have gone a bit quiet here.

I know it's only 3 weeks since my op but no improvement yet - still hopeful of course - the fact that the pattern has changed (dare I say got worse) could mean that if it has changed then it could change for the better over time!

I have had difficulty in analysing success rates etc - Leon - as you are in the category of those who have improved with time - I wonder if you have worked out what percentage of people fit into "not cured initially and spasms just as bad, say, 3 weeks after surgery to but have improved with time...."

Also - I have NOT been able to find out if anyone else has been told by their surgeon they have to surrender the driving license - I have waded through the DVLA site but there's no specific mention of MVD and when I phoned them they didn't know what it was either.

best wishes to you all

Barry

Hi Barry,

First, the driving licence - I have seen pdf documents published by various hospitals all advising that patients should seek the surgeon's opinion on whether they are fit to drive post-surgery. I will send you the links if you can't find them online, just let me know.

As for the success rates, I have the same problem with UK patients. There are about 3 patients who reported here that they were spasm-free as soon as they wake from surgery. But there were no follow-up from those who have to wait - we just don't know if they become cured or not without their updates. It is also common that the surgeons don't say precisely how many and how long after the surgery do the spasms stop. I have the distinct feeling that my surgeon promises little but confident that my spasms will stop in time. For a better picture, it is best to read the accounts of hfs-assn members who became free from spasms between 6 weeks to 4 years (!!!) after surgery. I really do believe that I will be too, like you said the spasms feel different now. Do be patient and be prepared for some days when the improvement seems to go into reverse. The botox clinic that I attended even offered treatment while I wait but I declined.

As for some sort of authority on this subject, do read the article by Prof Coakham I posted about 2 pages back. He did give some statistics there.

Best wishes

Leon

"We began MVD for HFS at Bristol in 1980 and have now (summer 2007) carried out about 200 procedures with 82% of patients cured, 11% improved and 7% no change." - Prof Coakham

Annoyingly he did not mention of the 82% of patients cured, how long after the surgery were they cured!

Hi guys,

My surgeon said ' after my mvd ', he had failed !! I asked, will it get better with time, he said, no, if your still having spasms, which I was, it has failed....I hope for your sake Barry, you get better...my spasms are worse than before my op...waiting a date for 2nd op, might be in the mail tomorrow..

Best o luck folks...

Sean.

Hi Barry,

I have re-read your question and found the following case study closest to what you described.

"At this time I do not have any spasms and feel wonderful. The spasms were really bad right after the surgery and for 6 months after. Then they were completely gone for 2 months and then returned only when I talked or smiled (social oppression). For the last 3 weeks, I have not had any spasms and everything seems completely "normal". I love it!" (Bonnie Driskill)