MVD surgery 8 days ago

Hi Sean,

All the best at your next consultation. I may find myself facing the same in the near future, and if so, I will certainly ask my surgeon the number of successful mvd #2 operations he has done. It may be tough persisting if he does not give an exact figure, but that would definitely be the deciding factor uppermost on my mind.

kind regards

Leon

Hi Sylvia,

Hope you are coping well, I agree totally that it would be wonderful if this damn condition could be cured with a simpler procedure (pardon my language!). But I am sure that Sean (and other who have gone through surgery) would agree that the surgery and the recovery was not that bad compared with other major surgeries, like orthopaedic surgeries, where the position of the incision wound makes the recovery process that much more uncomfortable. I was able to look after myself soon after discharge from the hospital, with full use of my arms and legs. And I was able to get a good night's sleep as long as I lie still on just the opposite side to the wound. I think the pre-operation assessment gives me quite a bit of re-assurance, as all the other possible side effects (loss of hearing, csf leak, bells palsy etc) are put at less than 5% (possibly even less with all the monitoring equipments used).

kind regards

Leon

hi all

hope everyone is doing well, i went to see my surgeon the other day and he has agreed to do the surgery for me, feel kind of relieved now.. obviously he has made no promises of success and there could be a small chance of complications like loss of hearing in my left ear but like i said to him at least ive given it a go and that how i would swap the hearing for the facial spasms any day of the week...just got to sit back now and wait fo a appointment date..will keep you updated

kind regards

chris

Hi Chris

Hope all goes well for you. When will it be done?

My consultant said "that due to vascular compression, surgical intervention would carry a significant risk."

Has anyone else been told this and been able to go ahead with the op?

Regards

Esther

thanks nuggy, not had a date he said he has a waiting list but there could be a cancelation for me..i said thats fine ive lived with it for nearly 10 year as it is..dont understand the vascular compression bit ive not heard that mentioned whist ive been seeing my surgeon

Hi Folks,

Best of luck Chris, your hearing may well be ok, mines was , but the surgery failed !! waiting on my 2nd op, go to the surgeon early in Aug, so I'll have to wait and see..

Esther,

Like all surgery, it does have a significant risk, but be sure your surgeon knows what he/she is doing..ask how many of this type of surgery they have performed before, and make sure they tell you..and ALSO ask, what is the success of the ops they have performed..don't be shy, it's your right as a patient to ask as many questions as you like, and don't be rushed by the surgeon, they don't seem to want to tell you too much..so ask.!!

And if you are not impressed, don't go ahead with that surgeon...after all, you are just another ' surgery completed' to them..and another mark on their card...

cheers folks...

Sean..

Hi fellow twitchers

Pleased to hear that you've been offered surgery Chris. Best to dwell on the prospect of being spasm-free rather than all the other stuff eh. All the very best to you - please let us know how it's going.

Sorry can't help you with the vascular compression question Esther, but Sean is so right in saying that you need to ask loads of questions and if your surgeon is not experienced then ditch him quick! I'm on my third one......

Do hope you'll soon be fixed Sean - if anyone deserves a good outcome it's certainly you.

My remission is well and truly over and my spasms are probably worse than they've ever been now. And just for good measure I've got a very painful frozen shoulder too. But, hey ho, it could be worse I guess.

Wonder how Leon is progressing after his surgery? Hope you're nearly no longer a 'club member' Leon - we all want out of this particular club, however nice the crowd are.

Take care everyone, all best wishes, Roseann

Hello Roseann,

You are not kept wondering for long as I am still here, twitches and all!

Nothing new to report, still waiting (patiently) for the spasms to stop. Generally better than pre-op but there are bad days in between when the spasms go into overdrive, usually associated with lack of sleep. When I start doubting, I would read and re-read my other thread here about those who had (long) delayed recovery from hfs after mvd surgery. Incidentally we have a new member who had mvd surgery very recently and posted on that thread just days after the surgery. He/She is still waiting like myself, but it seems that again, like myself, the operation had no complications. So I hope that this gives encouragement to those who are pondering surgery or not.

Chris, all the very best to you, I would be pleased to answer any questions you have about the surgery, either here or privately through asking the website administrator for my email address.

Sean, hope you get a date for mvd #2 very soon and wave goodbye to these spasms forever when you wake from surgery.

Good health to all!

Leon

Hi everyone

Chris - good luck with the MVD operation. Let us know how you get on.

Roseann - how strange - I've also got a very painful shoulder, although the doctors have said mine is due to osteoarthritis. I believe frozen shoulder and osteoarthritis are hard to tell apart. My spasm are on the left side - same side as the painful shoulder. I'm also starting to have dizzy spells when I tilt my head back. Sorry to hear the spasms are back with a vengeance.

Esther - I don't like the sound of your surgeon. The whole point of HFS is due to vascular compression on the cranial nerve, otherwise we wouldn't have it. I wonder what he expected to find was the cause?

Sean - you have my whole admiration for taking this on a second time. All the best mate.

Leon - you deserve success for all your patience. Like you, some days my spasms are worse than others - often due to tiredness or reading (my left eye closes completely when I read). Today is bad - I can hardly see what I am typing.

Anyone I have missed - I can only send my best wishes to you all.

Kind regards

Sylvia

HI again Leon and Sylvia

So sorry to hear that neither of you is spasm-free - fingers crossed that Leon will get there sooner rather than later and that Sylvia will find some help either via surgery or remission.

How interesting that you too have a very painful shoulder Sylvia - may be coincidence but maybe not. The trouble with my shoulder is that it keeps me awake for several hours every night and then, of course, the spasms are that much worse. God I hate being such a moaner but I know that our 'circle' will understand the need to occasionally feel sorry for ourselves.

Be gentle with yourselves and continue to hope for better things ahead. Love Roseann

Hi, Can anybody help? I am 53 years old, have had HFS for some 5 years now, botox has stopped working, had consultation re: MVD with consultant Nigel Mendoza (NHS) at Charing Cross Hospital and have recently

been given a date for the op! has anybody had MVD surgery performed by Mr. Mendoza, am really unsure

whether to go down this route as dont know much about his success rate with this surgery!!

Have got a private consult & MRI tomorrow with Professor Hugh Coakham who I know is highly

regarded in this field, Unfortunately I do not have private health care and would have to pay myself if

Professor Coakham performed surgery (lots of money). Any advice would be grateful.

Thanks

Hi Lilymay

I'm in about the same position as you, being a bit older and having had HFS for 8 years and having given up on Botox. I am on a waiting list for surgery at Frenchay Hospital (NHS - Mr Nik Patel) where success rates appear to be good. But, I am still scared stiff of the op. Several friends on this thread can give first hand experiences of how the op went for them and that's really helpful.

I saw Prof Coakham privately and he quoted me £12-14K for the operation privately. I understand that Mr Patel trained under him and that's why I asked my GP to refer me to him at the Frenchay, even though I live some distance from there. I had no trouble with this process and found everyone at the Frenchay to be very helpful (even though the physical enviornment is a bit offputting because it's very old and tatty looking).

Like you, I am still reticent about going ahead with the Op - it's a big decision, but it's also a big problem having HFS. Those on this thread always advise asking the Consultant or his secretary for the Consultant's stats (number of ops performed, success rate, those left with deficits after the op etc) - that should be quite possible to obtain for Charing Cross Hospital. Then compare it with what you are told about Prof Coakham or his NHS counterpart. If you have a voice recorder then take that or someone else with you to the appointment with Prof Coakham - there's always so much info that it's hard to remember it all afterwards. But, he's very personable and made me feel totally at ease.

Wishing you the very best of luck. It would be good to know how you get on and what you decide to do.

All best wishes, Roseann

Hi Lilymay,

If I may say so, your hfs experience sounds all too familiar to fellow sufferers here. Botox stopped working after a while and those of us who have gone as far as pre-mvd consultation failed to get a straight answer to the success rate of the neurosurgeon. Someone suggested that the secretary of the surgeon may provide the answer. I had a look at your surgeon's website, nigelmendoza dot com, but could not find anything relating to hfs mvd surgery specifically. However it shows that he has vast experience in neurosurgery.

Wish you a very successful operation, many do wake up spasm-free!

Hi all

I have had an MVD 12 days ago.

I was a bit reluctant to join a forum as I felt there'd probably only be posts from people where the procedure failed -

I am so totally confused now - straight after the op the assistant surgeon (registrar) basically gave me the impression that he was very disappointed that it had failed as I still had the vicious twitch - seeing - as he said they had clearly seen an indentation and had put the teflon in place.

I was gutted.

Since then I have spoken to him and I don't know if I put words in his mouth but I got him to say that it was possible that the position could (not would) improve with time. Why didn't he say that in the first place????

I am hopeful - even if it is false hope that I will improve.

The spasms have totally changed their pattern - I seem to have longer periods spasm free but when I do get them they seem to be much more prolonged and intense. I will keep you posted

me again

Leon - you mentioned in one of your posas about started work 3 weeks after instead of 2 because you are a mini-bus driver. I have been told that I need to contact the DVLA because I now have a 6 month driving ban associated with any craniotomy - I have not got details yet - do you know anything about this

thanks

Barry