MVD surgery 8 days ago

Hi Roseann,

It certainly makes sense to post the French and Belgian studies on a new thread as they might be lost at the end of a 9-page thread! Thank you for your suggestion and hope it helps our fellow sufferers.

I am continuing with a good but slow recovery. The spasms in the neck area has disappeared completely, and those around the left lip are very much lessened. This pattern seem to conform with that of another patient who mentioned that the spasms go in the same sequence (or reverse depending on how you look at it) as they appear - started with eye twitches progressing down the face and neck, so recovery starts from the neck upwards :-)

Hope you get relief from the frozen shoulder very soon. Best wishes to all.

Leon

Hi Leon

thanks again for your input.

The pattern of my spams is pretty much the same now - I get them less frequently but they certainly are THERE when they do happen - ie very pronounced -

I wonder if the fact that the pattern has changed that maybe in time it will improve - hope so anyway (of course).

Good luck

Barry

Hello everyone, I came across reading these blogs while looking for if someone had some taste side effects from MVD surgery.

I had my first MVD surgery in April 2012 ( I had only finished my last of a 2.5 botex treatment 3 months prior) It was a terrible experience, I had a leak, the incision got infected, I got a virus from one of the doctors in the OR ( i was the only one that got this no one else in my family but when I went back to the OR 4 days after leaving the hospital with a terrible headache this neo doc took care of me and said he was in the operation room and I had a virus he has and he has had it for 3 months) grrrrrrrr I was not happy someone was allowedin the OR when they were sick. So I have been blowing my nose this is a very big no no, I blew the capping they but over the ear . I had spasm bad still, headache , pain in the side of my head where they drilled the whole felt like a bad tooth ache all the time. 2 MRI,s, lumbar punture, ct scans.. you name it they did it , trying to find the leak. We discussed with all the scar tissue building and the leak being contained inside that the MVD surgery would have to be redone. So September 17th was the day. Now this time do to all the complicatoins they had to bring in a special in dease/virus control to make sure procedures were done properly, my actual surgereon did the operation with his assistant , no students worked on me at all this time ( not that I cared if they did they have to learn ) I feel good, the spasm are hardly there, no headaches so far ( 8 days post today) balance off a bit, ear not sore and my hearing is back. I do have a terrible taste in my mouth but maybe part of the process. When they went in they found another nerve closed so they cleaned it up, moved the three nerves around put another spacer in so now there is two, cleaned up the scar tissue and when he reopened the whole they drilled the first time , out came tons of fluid he said, he does not know how I did my daily routine with this pressure.. ( ummmmmmmm that is what I was telling them but life has to go on) . So I am pleased to say I have had great success with my second one and my spams are hardly any and nothing no one would even notice . I was the best thing I did for me and my family and am 49 turning 50

Hello Cathie,

Thank you very much for sharing your experience with us. What can anyone say but WOW! you certainly had been through hell and back. But no doubt you are glad (to put it mildly) that it has all been worth it. Many congratulations that your spasms are gone. I believe that many patients on the hfs-assn website have reported a nasty taste in the mouth after mvd surgery, so don't think you need to worry about it as it will soon clear. Really happy for you, you deserve every bit of the success having the courage to go through 2 major ops within 5 months.

Wishing you a very swift recovery period this time and enjoy a spasm-free life!

from a very envious Leon

Hi cathy

Writing this one finger from hols so excuse typing. Thanks for sharing your happy ending horror story - so pleased it has been second time lucky and you are getting your life back, but what a hideous road you have travelled. I wonder if you could tell us which hospital treated you please?

Keep on getting better and really hope you and your family will have good times to come, with love Roseann still twitching madly in Italy.

great for you Cathie - really brave to go through it all again!

I keep improving (not the spasms) and then suddenly I get these huge headaches again - I think it something to do with the op site swelling up - a few days agao all swelling was gone and now suddenly the lower part has swollen -

I panicked thinking it was an infection but as I am eating and don't appear to have a temperature I hope I can rule that out?

It's been nearly 7 weeks since the op - surely the site will have healed by now - wonder why I swell up there every so often - any ideas?

Oh - and you may be wondering why I haven't asked my surgeon - it's because I always get the answamachine (I have left messages to no avail) - they do have an emergency number but I am loathe to use it as I am still able to function - albeit with a huuuuuuuge headache ALL the time

Barry

Hi Barry I know from my first one.. I had swellowing and almost a toothlike head hurt on that side , specifically in one spot and when they did this operation and opened up the hole they previously drilled , fluid was being contained inside.. and that was causing the pressure.. I know I had 4 or 5 infections throughout all this.. I would go on anitbotics and it would get better then a week or two later it was back. My first operation was April and I had all these systoms till they just did this one , it is only 9 days post but the incision look good , no signs of infection and way different then last time. Our bodies tell us something is wrong I kept telling them something is wrong I hurt, I find my head heavy. I said this to them a week after my first operation.. after they went in this time now they know.. they don't even know how I was functioning.. on a daily basis, with my nerves to my nose being so swallon and closing off my breathing on the left side, and no hearing in my left ear and with that much fluid inside.. Listen you your body and presue your not crazy..

Hi Roseann

I am from Canada, not sure where you are from and it was the Royal university hospital here. A great Surgeon he is to the point , not comforting at all but does not talk in doctor talk and he listens , he did test after test and they would see the fluid but could not find where it was , he finally guessed it had to be contained inside. They were fast at each test and very caring.

Hi Cathy in Canada!

I'm in the UK and, if brave enough, will have surgery in Bristol here in the UK. Thanks so much for telling us all about your experiences and thank God it's good news this time around. All the very best to you and your family, Roseann x

Hi Cathie Lynn

Welcome to our little HFS forum. After reading about your experiences I'm glad I refused the surgery at Liverpool. I'm just too much of a coward, but good on you for going through it twice. Glad to hear you are on the mend and hope you are spasm free very soon.

Roseann - good luck with the shoulder surgery. MIne flares up from time to time but always goes away on its own. It's almost back to normal now. I found physiotherapy useless - they just gave me a stretchy band and told me to do exercises - agony! It does seem to me that some branches of medicine just can't wait to slice and dice as a solution to everything.

Sean - was it you who said you think we are all being used as guinea pigs? You were dead right mate!

Leon - how are your spasms now? Gone or abating I hope. Hopefully, it really is possible they will get better in time as stated in the article you posted.

Bazzer - hope you manage to get in touch with your consultant about those headaches. Sounds like hell for you.

Everyone - it would be interesting to know just how many people suffer from this terrible affliction worldwide and in which countries it is most prevalent.

Some days (like today) my spasms are hardly there but on other days they are severe.

Best wishes to you all.

Sylvia

Hi Sylvia,

I still get the spasms daily though they occur less frequently compared with pre-surgery. If they stay the same, I don't think I will go for mvd #2 as the spasms are more tolerable now and I don't fancy opening up the same spot again! unless the spasms get worst. By the way I think Cathie mentioned that she is now spasm free after the 2nd op.

I saw quite a few clips on youtube demonstrating how to ease the pain from a frozen shoulder through massage, and wonder if this may give Roseann and yourself some relief. Just type in the keywords 'frozen shoulder massage' in the search field of the website and the related videos will be displayed.

Kind regards

Leon

Hi again Sylvia and Leon and all

Thanks for the advice re shoulder massage, will check this out. I've had more or less everything else and that's why I am led towards surgery. Gosh, what a wreck I am - never imagined being like this at the tender age of 61! I'm still a girl in my head.........

It's a shame we all live so far from one another because it would have been good to have met up and had a group twitch - I have a picture of everyone on this forum and because we have this HFS rubbish in common, there is a bond between us.

In some ways, having two conditions makes each less self absorbing. I have days when the shoulder is so painful that I don't even think about the twitching and vice versa. So, what a lucky girl I am!

Take care you all and keep smiling, even lopsidedly, love Roseann

Well Roseann, if we live in the same town,4 or 5 of us could come together and do a Come Dine With Me HFS Special! There's no shame we're all the same (oops wrong show!).

Hi all - or should I say hi y'all in honour of our new Canadian friend?

My shoulder is 99% OK now. They used to do massage and heat pad treatments at NHS physio but that seems to have all gone. Roseann, have you been referred to physio? Someone suggested a professional massage from a sports physio might do the trick.

That Come Dine With Me sounds like a fun idea Leon - or even if we could just meet up. I do think we are spread apart throughout the UK.

Just a thought - do you think HFS could be caused by long-term contact lens use? Especially the old hard lenses which we are all about the age to have worn them?

Sylvia

Hi again Sylvia and Leon

Love the 'Come Dine with Me' idea, other than the cooking part! And we'd all think someone was 'coming on' with the amount of winking going on. If anyone is really interested in meeting up then I'll start the ball rolling by saying that I live near Winchester, Hampshire. But no pressure at all, I'll probably chicken out like I do from all other social engagements.

Glad your shoulder is nearly better Sylvia. I have had physio but the girl was a sadist and did no good at all. I have a Sports Massage Parlour (?, oh errr) just down the road so might give that a go. If it's an under cover brothel I doubt I'll get any offers.

And, just for the record, I've never worn contacts so I would be sceptical about the idea that they cause HFS. Mine is definitely brought on by stress and tiredness, and, as I've mentioned ad nausea, I get long, long periods of remission from mine. But, it always comes back and usually worse than ever, as now.

If anyone on this forum is really interested in meeting up and if we don't live hundreds of miles apart then I'd be happy to co-ordinate it. Cheers y'all! Roseann