MVD surgery 8 days ago

Hi Roseann, Sylvia and all,

I will be really pleased to meet up and share our experiences and some FOOD! I guess we feel really isolated with our condition but thankfully it is a rare one (about 8 in every 100,000 as reported by some). I think I have ever only met one other sufferer at the waiting room of the hospital during a consultation session but did not get the chance to speak with her.

You may not be aware that this site has introduced a new feature about 2 months ago - there is the private message facility, see the brown button on the left just below your username, date / time. We can use it to exchange private details so that we can speak on skype if not actually meeting up.

Have a good weekend everybody!

Leon

Hi

Leon - I did notice that brown button, but I don't seem to have one - have I been excluded for being naughty?

My spasms seem to be less severe recently - no doubt they will come back in overdrive. However, I've removed half of the stuffing from my pillow so that I'm almost lying flat now, I did this because I was suffering from a stiff neck in the mornings, but it does seem to be having a bit of a positive effect on the old HFS, or am I kidding myself? You are probably getting the picture that I'll try anything, so prepare to hear of some wacky exploits and theories.

Another thought - does weight have any influence on this? (I've lost 10lbs recently.)

How about smoking - not the ingredients of the tobacco but the facial movements made when "having a puff".

Sylvia

Hi everyone, Still just taking drug just now (Lamictal ) don't know if it is doing any good as I have been on it since diagnosis. Want to wait until twitches are worse before trying Botox. I live in Scotland so no chance of meeting up. This is a great forum as I don't feel so alone with this condition. Does everyone get shoulder and neck pain as part of this condition as well?

Best wishes

Esther

Hi Esther,

I had botox treatment every 3-4 months over a 4 year period and they generally worked well during the first 2 years before gradually losing effectiveness. I think our body become immune to botox with regular use. You may find that this is the pattern with most (if not all) users. Furthermore, you may get bruising under the eye after the injections which takes more than 3 weeks to clear completely. This happened to me on 2 occasions and they are almost as embarassing as the twitchings! I may be wrong but I don't think anyone with hfs has found botox as a long-term solution. I fully appreciate that we want to try all means before considering surgery, especially as success is not guaranteed although the chances are good.

I don't get shoulder and neck pain as part of the condition but suffered dizziness (labryinthitis) occasionally. I think our symptoms vary from person to person, with twitchings being the common factor.

I agree that it helps when you can discuss your condition with other sufferers, non-sufferers (bless them) have no idea what we have to deal with daily. People suffer with much much worst conditions, so I have to keep reminding myself not to grumble too much :-)

All the best

Leon

Hi Sylvia,

You have not been excluded from sending private messages. You need to click on the brown button found under the username of the person you wish to send a message to. Then that person will receive an email to say that a private message has been received on the forum. To view the message, go to the top of this page, look for 'Discussion Forums' shaded in dark green which has 3 sub-headings Profile, Messages and Sign Out, then click Messages.

Me too, lost about 10 lbs just before my surgery through daily exercise and a healthy diet (which I think has contributed to my swift recovery), but it has not changed the pattern of the spasms. I don't smoke, so I can't comment on its effect on hfs. I find that taking deep breaths and also trying to relax the jaw muscles helps to stop the spasms. As I said in my last post, I think we are all affected in different ways except for the spasms. By the way, I piled back the 10 lbs (and more) after the surgery through reduced exercise and also too much comfort eating!

Kind regards

Leon

Hello

Leon - thanks for the advice about the brown button, but at the moment there's nothing I need to say in private that I wouldn't want everyone to read.

Your are right about there being worse things to have to live with. Also, that relaxing the jaw muscles and deep breathing can help.

I never found the botox injections painful or that they caused bruising but unfortunately they didn't help at all. I do suffer from dizziness occasionally but didn't connect it with the HFS.

Sean - you've gone very quiet - how are you? Are you recovering from your MVD2? All the best with that if you are.

Esther - it's a pity you don't know if the drug you are taking is helping as I wouldn't mind giving it a go. Please keep us informed.

We do seem to live at all ends of the UK unfortunately, so it seems unlikely that we will ever meet up. Skype seems a bit intrusive due to our condition. I avoid spending too much time socialising as it's just too embarrassing and exhausting trying to control/hide the spasms.

Best wishes to you all.

Hi all

Thanks Leon for explaining the 'brown button' under each of our names - mine is red actually but I now know it works! I found a couple of private messages in the inbox I didn't know I had, so thank you.

I believe Lily May had her operation on 11 Sept - hope she may let us know how it went when she feels up to it.

I totally agree with Sylvia about how tiring it is to socialise and converse, but it would be worth it if we could get a group of us twitchers together. Not sure about Skype either - it's a bit 'in your face' for people who are embarrassed about their faces.

As for smoking and HFS - definitely not in my case because I don't smoke. I have had dizziness, shoulder and neck pain though and do wonder if this is connected to the problem or coincidental. I wish I could comment on weight loss and HFS.................. it could be associated with weight gain in my case, having gained a couple of stone since it all started.

Take good care everyone and look forward to more instalments and an update from Sean and Chris too hopefully, cheers, Roseann

Hi fellow twitchers

How about my contact lens theory? Anyone used contact lenses in the past - especially the old hard ones?

Anyhow, I don't suppose there is any use dwelling on what causes this thing, What we need is an effective, possibly less invasive, preferably painless cure.

Sylvia

hello everybody

at the risk of tempting fate I felt I should write and say that I feel my "twitches" have lessened over the last week - certainly not as often or severe. I am always frightened to say things like this because before when I have felt a decrease and acknowledged it they come back soon with a vengeance!

They are still very much there but as said not such frequency and it is the eye that goes and not always the whole side of my face as was previously the case - looking up!!!!

Best wishes to you all

Barry

Hi Barry,

Really pleased for your improvement, and hope the spasms stop altogether very soon.

Did your surgeon tell you how many pads have been applied? Although only one artery was shown touching the nerve on my mri scan, the surgeon padded off 2 areas (just for insurance?).

kind regards

Leon

hi Leon

he said they'd put 2 pads - think he said it was only the one vessel they thought was causing the problem - and there was indentation - so he assumed it was clear cut - but seems it wasn't

I saw surgeon on Tuesday last week and he said it was possible there were more problems deeper down and he could operate again! I said - not on your .... - not for a while at least anyway!

Particularly as he said that there would be a marked increase of complications doing another op. He also said that "people can live with HFS" (obviously has't himself been a suffere!) and gave the impression he wasn't keen to operate anyway!

Also my surgeon said the MRI scan can't show up vessels touching etc - and that they did the scan purely to ascertain there wasn't a tumor or other complications.

Regards

Barry

Hi everyone

It as been a month and my eye spasms alot I mean alot, i wake up with real bad head aches and the taste in my mouth is not as bad but there, I get tired easly, not sure i woild recomment the MVD to anyone the sucess rathe sucess rate does not seem as high as the surgeons give it. The second time around was not as bad as the first at all and again it only has been 4 weeks so healing will take longer.

Barrie i had to pads put in

Hi Barry, Cathy and all

Really sorry to hear that the news has not been great for either Barry or Cathy. Can't imagine how your surgeon made you feel Barry - he really has no idea at all if he thinks that living with HFS is OK - it certainly isn't, and we'll all vouch for that. Even what he said about the MRI does not stack up with what my consultant told me - he could clearly see the arterial loop that was pressing on my facial nerve.

Really hope you soon start to feel some recovery Cathie - can't imagine going through this operation twice - I am **** scared of having the first one. All of you guys are so brave to have gone under the knife, but to do it twice - that's real heroics.

My own spasms are as bad as they have ever been just now and I am on the point of putting myself back on the MVD list. Just need some courage - Dutch or otherwise!

Take care y'all and may God speed your recoveries, Roseann

Hi Leon

I've tried sending you two messages today but each time my computer freezes up and refuses to send the message. Sorry about this, it's something about my computer and the messaging service I think - really annoying to type a longish message and then have it disappear forever. Anyway, just wanted to let you know I've tried.

Cheers, Roseann

Hi Leon,

I had my MVD eight days ago (just like your original discussion title).

I had it on the Wednesday and came home on the Sunday. I only have about 50% hearing on my right side and feel like my head is in a vice. You were so lucky not to have a headache by day 8! I am popping pills like they are going out of style. I have been assured my hearing will improve within a month or so. I haven't managed to leave the house yet as I feel so dizzy. The good news is that my spasms are greatly reduced. Did you feel really tired?

K