MVD surgery 8 days ago

Hi all

I'm seriously starting to get cold feet about this MVD surgery, especially after reading Sean's comments. I've been on other websites about this and never read a good report yet - many 2nd operations mentioned. I could even be worse off than I am now. I've been kidding myself that my spasms aren't too bad - in fact I had none at all during the entire consultation in Liverpool last week. Maybe that's why they emphasised how bad post-op was. I don't know what to do. Help!

Regarding researching success of surgeons carrying out MVD ops, I once did come across a list, dating back to the early 1970s, of surgeons from all around the world and their successes or failures, but I can't find it again. I wonder why?

Leon - I had a look at the Q&A you mentioned. Very interesting.

Sylvia

Sorry everyone, I've just read my comments and I sound very self'-centred not asking other people how they are - I'm not usually like this, just jittery about possible imminent surgery.

Sean and Leon - Q&A says it could take some time post-surgery for the spasms to stop, so don't give up yet Sean.

Harleygirl/Denise and Roseann - hope you have more courage than I have. Denise - don't be forced into the op if you don't really want it. Roseann is right when she says you should be entitled to disability for this condition.

Everyone else - try and keep cheerful. I know it's hard with this ugly condition, but since I've started telling people I am considering having this op you'd be surprised at the number who've said they had never noticed. (Maybe they're just being kind.)

Sylvia

Hi Sylvia,

I am not surprised that you are getting cold feet about going ahead with surgery. I agonised over it for more than a year after my first consultation with the surgeon before making up my mind. Follow your instinct, if you have doubts (as you are right now) then now is not the time, you can always contact the surgeon again when you change your mind. A common fear is that one may end up with a worst condition after surgery. I was prepared to lose hearing in one ear, but the thought of bells palsy filled me with horror until I learned that the condition is transient. Once the decision was taken (when I cannot bear the spasms anymore), even the surgeon's doubt about success just 10 minutes before the surgery did not deter me. As for a good report, see Roseann's thread 'remitting hfs - surgery or not'. Loopyloob57/Linda had a successful op at Leeds Hospital and was spasm free when she woke from surgery (and remained so).

I would suggest that you forget about surgery for now, don't even consider it, when it is the right time you will have no hesitations at all. Just my 2 pence worth!

Leon

my thoughts exactly, really do not fancy this operation after reading so many negative comments. the only good thing in my life is that family and friends understand and leave me to my self when im suffering with the problem the negative is being out of work due to how sad and ill it makes me feel.. the doctors understand but the goverment (medical people) think im just over reacting and that im fit and well every day of the week.. the day of my medical i was feeling o.k so thats how they saw it when they failed me but the day of my tribunal i was really suffering, they saw it 1st hand and passed me

Hi Sylvia

Please never worry about appearing selfish - this forum is great for allowing each of us to express our feelings/concerns/advice etc and I find great comfort in knowing that there are others who know just how 'blunting' HFS can be. We are all saying so many things which are common to us all and that alone makes me realise that I am not being a whimp or making a fuss about nothing. And, I've seen consultants about 3 times and each time my spasms completely went away during the consultation - it's something to do with nerves and adrenalin I think. But, I took along a video so he knew I wasn't making it all up. And the business of friends telling you they hardly notice is so so common, even my consultant told me that he hears this time and time again. My response to friends who say this is "thanks for saying this, but it affects me very greatly even if others don't notice it". I find that having HFS in a social situation is like waging war with your face at the same time as trying to smile and talk to others - it gives me a major headache and I tend to avoid all social situations nowadays. Like you, I am battling the decision as to whether or not to go ahead with surgery. I have the added good complication of having several months of complete remission each year - makes the decision that much harder.

Take care and never feel selfish - we, of all people, should be able to allow a bit of 'poor me/us'. All best wishes and hope you reach the right decision for you, Roseann

Hi Chris

Thanks for sharing this stuff about what I assume is 'incapacity benefit' or 'disability living allowance'. Does this mean that they granted you one of these benefits at tribunal? If so, this is majorly important to other sub-retirement HFS sufferers. I had to give up work due to HFS but didn't think about claiming the benefit. Now, I'm just over retirement age so cannot do so. I honestly don't know how anyone can hold down a job which requires social contact when they are battling HFS - it must be hell and very very tiring - I know it was for me for 5 years before I threw in the towel.

Please tell us more about any benefit you have been able to claim, it would be of interest to several of us on this site. Cheers, and good luck with your own surgery decisions. I think Leon is right that only you/we will know when the time is right to proceed with surgery and it's probably when the alternative becomes totally unbearable. Roseann

hi

the benefits i claim is ESA i dont think im entitled to dissabilty allowance as i think this illness has to affect your life 24hrs a day 7 days a week in my case its between 3-4 times a week averaging from 12-24 hrs a day with no pattern at all to the spasms appearing, so the medical people see it as that are fit for work at some points.. but if you dont know when the spasms are going to start how can you tell someone that your going to be fit on a certain day of the week... i never plan anything these days due to that reason alone...anyhow hope im not bringing people down, hope your all fighting fit and best for the future

Hi Sylvia,

There is a good report on mvd surgery by forum member 'suewithout' posted on 17.7.2010 on the thread 'HFS and MVD'. The surgery was carried out at a little known hospital in Tooting, south London. She was spasm-free immediately after surgery but lost all hearing in one ear.

wow, i failed a medical 7 months ago, had it overturned at the tribunal 2month later after the judge and the doctor saw 1st hand how bad this illness affects a person and 3 month later which is todays date i have recieced another letter saying i have to attend another medical next week...obviously the DWP dont see HFS as a serious condition to peoples lifes

Hi again Chris

Can't believe that 'they' (whoever they may be) are putting you through another medical after a tribunal upheld your case - that really sucks and must make you feel angry and depressed. If you need an advocate then I'd be happy to help you fight anything which needs fighting, though I expect you're pretty good at fighting by now! My experience of 'the system' (as a social worker and advocate) is that most often the left hand does not know what the right hand's doing and your name may just have come up on a list which does not connect with tribunal outcomes. Anyway, whatever the case, rely on my support if you should need it. Take care and don't let the b******s grind you down. Roseann

Your story is very encouraging ,,, I have an appointment at addenbrookes hospital in two weeks time was wondering if anyone else has been there .

Your story is very encouraging ,,, I have an appointment at addenbrookes hospital in two weeks time was wondering if anyone else has been there .

hi roseanne

thank you very kind words from you, i had the citizens advice help me through the tribunal. i know i'll fail the medical again as my condition hasnt changed if not got worse and they dont believe you they just sit there clicking away on there computer asking if you can bend up and down.. but they see it as, because it dosnt affect me 24/7 then on my 2 good days out of 7 im a fit and healthy human being.. so they will fail me and i'll spend the next 8 month worrying making things worse about the tribunal yet again.. but the show must go on.. hope everyones good out there trying to relax a bit more as i think thats the key

Hi Vixs,

Welcome to the forum :-)

May I suggest googling your surgeon's name together with words like mvd surgery and addenbrooke? I found out more about my surgeon by doing so. He has a page on justgiving when he participated in the London Marathon to raise funds for the National Brain Appeal and many grateful sponsors (ex-patients) wrote on how their lives have been changed for the better since he has operated on them.

All the very best!

Hi Vixs

Welcome to this very select gang of twitchers! It's really helped me to have so much online support/info/advice and I hope it does you too. I am with the Frenchay Hospital in Bristol and so can't help with info on Addenbrooke's, but I wish you luck in following Leon's suggestion.

Hi again Chris

Don't forget to take a video of your twitching to this ridiculous re-medical and copies of your tribunal outcome too! I went to a surgeon once who didn't believe that I had a twitch at all (because it tends to go away when I am feeling nervous), but the video clip really helped convince him. Good luck with it all, will be rooting for you and will do anything you need to help if it arises. Roseann